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  • Electronic Resource  (75)
  • 2000-2004  (75)
  • Quality of life  (75)
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  • 1
    Electronic Resource
    Electronic Resource
    Springer
    European journal of pediatrics 159 (2000), S. 268-272 
    ISSN: 1432-1076
    Keywords: Key words Glycogen storage disease type 1b ; Portacaval shunt ; Ferrit MRI of liver adenoma ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract  In two girls with glycogen storage disease (GSD) type 1b, terminolateral portacaval shunt (PCS) with partial circular resection of the lobus quadratus of the liver was performed at the age of 12 and 10 years, respectively. At that time, the patients had a height of −3.1 and −1.7 SDS, respectively. PCS resulted in a spectacular growth spurt of 35 cm within the first 5 years after surgery in both of them. As first sign of puberty, breast enlargement started 2.5 years after PCS in both patients. Improved glucose tolerance was evidenced by increased levels of blood glucose and insulin after PCS. Diet with raw cornstarch (CS), 2g/kg body weight four times daily, was started 8 years after PCS in patient 1, but initiated with nightly gastric feeding at the age of 2 years in patient 2, 8 years before PCS. Treatment with recombinant granulocyte colony-stimulating factor (rhGCSF), 6 μg/kg body weight every 36–48 h, was started 20 years after PCS in patient 1, but only 1 month before PCS in patient 2. Progressive development of up to 7–8 liver adenomas was observed after PCS, but without conclusive signs of malignancy on Ferrit MRI. The PCS is still open 23 and 7 years after PCS, respectively. Terminolateral PCS with partial circular resection of the lobus quadratus of the liver associated with dietary control and rhGCSF might still have a place in the treatment of GSD type 1b because it improves the tolerance to fasting and the quality of life and moreover yields excellent metabolic control. Conclusion Treatment of glycogen storage disease type 1b by portacaval shunt might be considered in patients with height-for-age below the 3rd percentile occurring in spite of dietary control, or before considering liver transplantation which, if necessary, can still be performed after shunt surgery.
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  • 2
    ISSN: 1573-7284
    Keywords: GHQ-28 ; Ischaemic heart disease ; Mental health ; Quality of life ; SF-36 ; Validity
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Objective: To assess the mental health of patients admitted to hospital with suspected ischaemic heart disease, by means of two instruments, the General Health Questionnaire (GHQ-28) and the MH (1–5) dimension of the SF-36 Health Survey Questionnaire, and to compare the psychometric properties of both questionnaires in this population. Methods: A study was conducted of 185 patients consecutively admitted to hospital with suspected ischaemic heart disease, classified into four groups: Acute Myocardial Infarctus (AMI), unstable angina, non-ischaemic cardiologies, and non-cardiological conditions. Their mental health was assessed by means of the GHQ-28 and the MH 1–5 sub-scales of the SF-36; the validity of the results were analysed by the association of each instrument with socio-demographic (age, sex, social class, and educational level) and clinical (co-morbidity, risk factors, diagnostic groups and background to the illness) variables. The correlation of each instrument with other sub-scales of the SF-36 was studied. The internal consistency was measured by Cronbach's α, together with the item-internal consistency and item-discriminant validity. Results: Of the population studied, 71.9% were males and the mean age was 60.2 years (SD: 10.4). The diagnosis for 33.5% was AMI and for 37.8% unstable angina. For all the variables studied, the scores in the two instruments were ordered in the same way, and were significantly worse for females and for the most disadvantaged social class. None of the scales discriminated in respect of the diagnostic group or the presence of comorbidity. However, a linear relationship was observed with risk factors. Cronbach's α was 0.95 for the GHQ-28 and 0.80 for the MH 1–5. Correlations with the other dimensions showed ranges of −0.35 to −0.61 for the GHQ-28 and of 0.26 to 0.61 for the MH 1–5. These were highest for the Vitality and Social Functioning sub-scales in both instruments. Conclusions: The subjective perception of mental health is measured in a similar way by both the MH 1–5 scale of the SF-36 and the GHQ-28. However, since the MH 1–5 questionnaire is shorter, it should be administratively easier to introduce into routine cardiological practice.
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  • 3
    ISSN: 1437-7772
    Keywords: Key words Gastric carcinoma ; Isolated hepatic recurrence ; Arterial infusion therapy ; Low-dose CDDP and continuous 5-FU ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Patients with metachronous liver metastasis after curative resection of gastric carcinoma generally have a poor prognosis, even when recurrence is confined to the liver. We report a patient in whom hepatic arterial infusion therapy with bolus low-dose cisplatin (CDDP) and continuous 5-fluorouracil (5-FU) was effective against large metastases confined to the liver. An 83-year-old man was admitted with huge liver metastases from gastric carcinoma. Intra-arterial bolus injection of low-dose CDDP (5 mg) and continuous intra-arterial infusion of 5-FU (250 mg/day for 7 days) was started. After four courses of this arterial infusion therapy, computed tomography scans revealed shrinkage of the liver metastases. He was followed-up as an outpatient and continued to receive the arterial infusion therapy once every 4 weeks. Throughout the course of the chemotherapy, a partial response of the liver metastases was maintained. The patient had an improved quality of life after starting the chemotherapy, and he survived for 16 months from the commencement of the therapy. Arterial infusion therapy with bolus low-dose CDDP and continuous 5-FU may be recommended for patients with isolated hepatic recurrence of gastric carcinoma.
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  • 4
    ISSN: 1433-8726
    Keywords: Key words Bladder neoplasm ; Quality of life ; QLQ-C30 ; Cystectomy ; Ileal conduit ; Orthotopic neobladder ; Urinary diversion
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The impact of bladder removal and urinary diversion for patients' everyday life is largely unknown. The aims of this study were to compare subjective morbidity of ileal neobladder to the urethra versus ileal conduit urinary diversion and to elucidate its influence on quality of life. A total of 102 patients who underwent cystectomy due to a bladder malignancy were included in the study. In 69 patients (67.6%) an orthotopic neobladder and in 33 patients (32.4%) an ileal conduit was performed as urinary diversion. The compliance was 99% and mean follow-up was 37 months. All patients completed two retrospective quality of life questionnaires, namely the QLQ-C30 and a questionnaire developed at our institution to ask for urinary diversion specific items. The questioning and assessment was performed by non-urologists. The results obtained from the validated (QLQ-C30) and our own specially compiled questionnaire clearly demonstrate that patients with an orthotopic neobladder are more able to adapt to the new situation than patients with an ileal conduit. In addition, neobladder to the urethra improves the quality of life because it improves self-confidence, causes better rehabilitation as well as the restoration of leisure, professional, travelling, and social activities, and reduced risk of inadvertent loss of urine. For example, 92.8% of neobladder patients did not feel handicapped at all, and 87% did not feel sick or ill, in contrast to 51.5% and 66.7% of ileal conduit patients, respectively. Of the neobladder patients, 74.6% felt absolutely safe with the urinary diversion in contrast to 33.3% in the ileal conduit group. Only 1.5% of neobladder patients had wet clothes caused by urine leakage during the day, versus 48.5% of ileal conduit patients. Moreover, 97% of our neobladder patients would recommend the same urinary diversion to a friend suffering from the same disease, but only 36% of ileal conduit patients would do so. These results demonstrate that the quality of life is preserved to a higher degree after orthotopic neobladder than after ileal conduit urinary diversion.
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  • 5
    ISSN: 1433-0407
    Keywords: Schlüsselwörter Morbus Parkinson ; Neuropsychologie ; Psychologische Tests ; Lebensqualität ; Keywords Parkinson's disease ; Neuropsychology ; Psychological tests ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Summary In addition to the motor symptoms of Morbus Parkinson, a number of cognitive and emotional changes take place. The diagnosis of these concomitant symptoms has received increasing attention in research and clinical practice. Global rating scales offer economical advantages but generally do not satisfy the requirements of psychometric criteria, and they do not suffice in light of the multidimensional symptoms of the disease. Based on recent research results, recommendations from the CAPSIT protocol (Core Assessment Program for Surgical Interventional Therapies) for diagnosis of neurosurgically treated Parkinson's patients, and the restraints of everyday clinical work, we propose a standardized neuropsychological diagnostic routine. It includes diagnostic methods that are in use internationally and so timesaving and easily accessible that they can be considered suitable for routine diagnostics. Data comparison among various treatment centers can thus take place more easily. We have included only methods that differentiate well and whose test criteria offer a basis for thorough consultation as well as planning and evaluation of multidimensional therapy.
    Notes: Zusammenfassung Neben den motorischen Symptomen treten beim Morbus Parkinson eine Reihe kognitiver und emotionaler Veränderungen auf. Die Diagnostik dieser Begleitsymptome hat in den letzten Jahren nicht nur im Bereich der Forschung, sondern auch in der klinischen Praxis zunehmend an Bedeutung gewonnen. Globale Ratingskalen genügen trotz ihrer ökonomischen Vorteile in der Regel nicht den Anforderungen psychometrischer Testgütekriterien und werden der Multidimensionalität der Erkrankung nicht gerecht. Basierend auf dem aktuellen Stand der Forschung, den Empfehlungen des CAPSIT-Protokolls zur Diagnostik neurochirurgisch behandelter Parkinsonpatienten sowie den Erfordernissen der klinischen Praxis wird eine Testbatterie zur standardisierten neuropsychologischen Routinediagnostik vorgeschlagen. Sie umfasst diagnostische Verfahren, die zeitökonomisch, gut zugänglich und international verbreitet sind, um in der Routinediagnostik eingesetzt werden zu können und den Austausch zwischen verschiedenen Zentren zu vereinfachen. Es wurden nur Verfahren berücksichtigt, deren Differenziertheit und Testgüte Grundlage für eine fundierte Beratung sein können sowie solche, die für die Planung und Evaluation einer multidimensionalen Therapie geeignet sind.
    Type of Medium: Electronic Resource
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  • 6
    ISSN: 1433-0385
    Keywords: Keywords: Inguinal hernia ; Plug-and-patch repair ; Results ; Quality of life ; Geriatric ; Elderly. ; Schlüsselwörter: Leistenhernie ; Plug-und-Patch-Reparation ; Ergebnisse ; Lebensqualität ; geriatrisch ; älter.
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Zusammenfassung. Im Rahmen einer prospektiven Beobachtungsstudie wurden die perioperativen Ergebnisse der Plug-und-Patch-Reparation bei Patienten ≥ 65 Jahre untersucht und zusätzlich bei 34 konsekutiven Patienten die Lebensqualität vor und 3 Monate postoperativ standardisisiert mit Hilfe der Short Form (SF) 36 – einem validierten Lebensqualitätsbogen – erhoben. Von August 1994 bis Februar 1999 wurden 147 Patienten mit einem Durchschnittsalter von 73 ± 5 Jahren (65–92 Jahre) in der Plug-und-Patch-Technik zumeist in Lokalanaesthesie (LA: n = 124; 84 %, ITN: n = 23; 16 %) operiert. Die präoperativen Risikofaktoren waren vor allem Alkoholkonsum, Hypertonus, Diabetes mellitus, coronare Herzerkrankung, Nikotinkonsum, cerebrale Erkrankungen, Hyperlipidämie und pulmonale Erkrankungen. Nach anaesthesiologischer Einschätzung bestand in der Mehrzahl ein Stadium ASA II (ASA I: n = 14; 9 %, ASA II: n = 82; 56 %, ASA III: n = 51; 35 %). Die durchschnittliche Operationszeit betrug 41 ± 17 Min. (26–73). Intraoperative Komplikationen traten nicht auf, postoperative Komplikationen bestanden vor allem in oberflächlichen Wundhämatomen (n = 6; 3,7 %), und -infektionen (n = 1; 0,6 %), Seromen (n = 7; 3,8 %), Harnverhalt (n = 3; 1,8 %) sowie ilioinguinalem Schmerzsyndrom (n = 3; 1,8 %). Der postoperative Schmerzmittelbedarf betrug 4,9 ± 1,8 g Novalgin®über durchschnittlich 4 ± 3 Tage. Die Dauer des postoperativen Klinikaufenthaltes lag bei 2 ± 1 Tagen, die Einschränkung alltäglicher Verrichtungen bei 6 ± 3 Tagen. Bei der klinischen Nachuntersuchung ergab sich in allen Fällen ein regelrechter Befund ohne Hinweis auf ein Rezidiv oder Spätkomplikationen. Bei der Lebensqualität zeigte sich 3 Monate postoperativ eine signifikante Verbesserung (p 〈 0,05) in den Dimensionen: physische Funktion, Schmerz, Vitalität und soziale Funktion im Vergleich zu den präoperativen Werten. Tendentiell günstiger aber nicht signifikant waren postoperativ die Dimensionen Rolleneinschränkung sowie psychische und globale Gesundheit.
    Notes: Abstract. In a prospective study the perioperative results of plug-and-patch repair were investigated in patients ≥ 65 years, and quality of life was assessed using the SF36 preoperatively and 3 months after the procedure in 34 consecutive patients. From August 1994 to February 1999 147 patients with a mean age of 73 ± 5 years (65–92 years) were operated on using the plug-and-patch technique, mostly under local anesthesia (LA: n = 124, 84 %, ITN: n = 23, 16 %). Preoperative risk factors were alcohol consumption, hypertonus, diabetes mellitus, ischemic heart disease, smoking, cerebrovascular disease, hyperlipidaemia and pulmonary disease. Most of the patients were ASA II (ASA I: n = 14, 9 %, ASA II: n = 82, 56 %, ASA III: n = 51, 35 %). No intraoperative complications occurred, postoperative complications consisted of superficial wound hematoma (n = 6, 3.7 %) and infection (n = 1, 0.6 %), seroma (n = 7, 3.8 %), urinary retention (n = 3, 1.8 %) and ilioguinal pain syndrome (n = 3, 3.8 %). The total amount of postoperative analgesic consumption was 4.9 ± 1.8 g Novalgin for about 4 ± 3 days. The duration of postoperative hospitalization was 2 ± 1 days and limitation of daily activities 6 ± 3 days. Clinical examinations after 3 months revealed no recurrence or late complications. Investigation of quality of life showed a significant improvement in the SF36 domains of physical activity, pain, vitality, and social functioning after the operation. No significant change was observed for physical, emotional, and global health.
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  • 7
    ISSN: 1433-8491
    Keywords: Key words Obsessive-compulsive disorder ; Subclinical OCD ; Epidemiology ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Background: Despite the worldwide relevance of obsessive-compulsive disorder (OCD) there are considerable differences in prevalence rates and gender ratios between the studies and a substantial lack of prevalence data on subclinical OCD. Moreover, data on quality of life and on psychosocial function of subjects with OCD and subclinical OCD in the general population are missing to date. Methods: German versions of the DMS-IV adapted Composite International Diagnostic Interview were administered to a representative sample of 4075 persons aged 18–64 years living in a northern Germany region. Specific DSM-IV based criteria for subclinical OCD were used. Results: The life-time prevalence rates for OCD and subclinical OCD were 0.5% and 2%, respectively. Twelve month prevalence rates were 0.39% and 1.6%, respectively. The gender female:male ratio was 5.7 in OCD and 1.2 in subclinical OCD. In various measures of psychosocial function and quality of life, OCD and subclinical OCD were significantly impaired. However, subclinical OCD subjects did not visit mental health professionals more often than controls. Conclusion: Due to different epidemiological characteristics subclinical OCD might represent a syndrome distinct from OCD which is also associated with significant impairments in personal and interpersonal functions and in quality of life.
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  • 8
    ISSN: 1433-7339
    Keywords: Key words Cancer ; Fatigue ; Depression ; Symptom management ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract  Fatigue is one of the most frequent symptoms in cancer patients. However, the precise causes of this fatigue are still unknown, and this situation makes it difficult to combat the problem. The present study was conducted to investigate factors correlated with fatigue in disease-free breast cancer patients. A group of 134 randomly selected ambulatory breast cancer patients who had undergone successful surgical treatment participated. They completed the Cancer Fatigue Scale, the Hospital Anxiety and Depression Scale, the Mental Adjustment to Cancer Scale, and an ad hoc questionnaire detailing physical symptoms, social support, and demographic variables at home and returned them by mail the following day. Multiple regression analysis revealed that fatigue was significantly correlated with dyspnea, insufficient sleep, and depression, and that these three variables accounted for a total of 46% of variance in fatigue. Factors concerned with the cancer and treatment, such as disease stage, lymph node metastasis, number of days since operation, past intravenous chemotherapy, radiotherapy, current use of fluoropyrimidine compounds, and current use of tamoxifen citrate were not correlated with fatigue. The results suggest that fatigue in this population is determined by current physical and psychological distress rather than by the cancer itself and prior cancer treatments, and that the management of dyspnea, insomnia, and depression might be important in reducing fatigue in this population.
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  • 9
    Electronic Resource
    Electronic Resource
    Springer
    Der Unfallchirurg 103 (2000), S. 371-374 
    ISSN: 1433-044X
    Keywords: Schlüsselwörter Knieendoprothese ; Lebensqualitätsgewinn ; Key words Knee endoprosthesis ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Abstract From a group of 41 consecutive patients receiving an endoprosthetic knee replacement 35 patients underwent complete pre- and postoperative documentation of life quality in the short term follow-up. The comparison of pre- and postoperative life quality assessment with the SF-36 form showed significant differences on the 5% level for the categories “somatic pain” and “psychological wellness”. The parameter “somatic functionality” showed with a P-value of 0.0616 almost significant improvement. The other parameters also showed improved values without reaching statistical significance. In summary, after implantation of a total knee replacement an improvement of life quality can be documented.
    Notes: Zusammenfassung Aus einem Gesamtkollektiv von 41 nacheinander operierten Patienten konnten bei 35 Daten hinsichtlich der allgemeinen Lebensqualität im kurzfristigen Verlauf dokumentiert werden. Bei der Untersuchung der prä und post-operativen Lebensqualität mit Hilfe des SF-36-Scores zeigten sich auf dem 5-%-Niveau eine signifikante Verbesserung in den Kategorien “Körperliche Schmerzen” und “psychisches Wohlbefinden”. Mit einem P-Wert von p = 0,0616 kann eine fast signifikante Verbesserung in der körperlichen Funktionsfähigkeit konstatiert werden. Weitere 5 untersuchte Unterpunkte zeigten keine signifikante Verbesserung, jedoch bessere Werte bei den errechneten Mittelwerten. Zusammenfassend ist festzustellen, daß die Implantation einer Knieendoprothese zu einem deutlichen Gewinn in der Lebensqualität des kranken Menschen führt.
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  • 10
    ISSN: 1432-1459
    Keywords: Key words Motor neurone disease ; Amyotrophic lateral sclerosis ; SF-36 ; Carer Strain Index ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The measurement of functioning and well-being from the perspective of the patient has in recent years become central to the assessment of health and the evaluation of treatment regimes. The past decade has seen an enormous growth in the application of measures designed to assess quality of life in a vast array of medical specialities. However, the use of such measures in neurology has been relatively limited, and this has certainly been the case in amyotrophic lateral sclerosis (ALS). The European ALS Health Profile Study is a longitudinal survey of patients diagnosed with ALS or other motor neurone diseases in which patients are aksed to complete questionnaires concerning their subjective health status. Data from clinical assessments are also collected. It is intended that the information collected will provide more systematic and detailed evidence of the impact of the disease from the perspective of the patient. This contribution documents results from baseline assessment obtained from data supplied by clinicians, carers and patients themselves. Three outcome measured are assessed in this paper: the SF-36, a generic measure of well being and functioning, the ALS Functinal Rating Scale and the Carer Strain Index. The evidence presented here suggests that these measures provide a meaningful and valid picture of the impact of the disease. The data indicate that ALS has substantial adverse effects both upon the functioning and well being of patients and carers, as well as an association between the emotional health status of patients and carers, and between the physical health status of patients and carers.
    Type of Medium: Electronic Resource
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  • 11
    Electronic Resource
    Electronic Resource
    Springer
    Archives of gynecology and obstetrics 264 (2000), S. 51-53 
    ISSN: 1432-0711
    Keywords: Key words Self-expanding metallic endovascular stents ; Endometrial cancer ; Iliac vein thrombosis ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract  There are few cases, to our knowledge, that report the successful treatment of iliac venous stenosis due to gynecologic malignancies with the use of self- expanding metallic endovascular stents. Our patient, who had right lower limb edema, had iliac lymph node metastases which caused iliac vein stenosis by direct invasion from endometrial cancer. The patient was not considered to be a good surgical candidate. A 10-mm diameter self-expanding metallic endovascular stent was placed in the external iliac vein. The patient’s symptoms of right lower limb edema improved dramatically, and she was discharged at 3 weeks after stent placement. The patient had no further symptoms, with continued resolution of the right leg edema during the 10 months following stent placement, at which time she died from the primary disease. The treatment to this patient with a self-expanding metallic endovascular stent proved to be very efficacious and less stressful than direct venous reconstruction or femorofemoral venous bypass grafting. In addition, this procedure dramatically improved the patient’s quality of life.
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  • 12
    ISSN: 1434-3932
    Keywords: Schlüsselwörter  Bauchaortenaneurysma ; Lebensqualität ; Endovaskuläre Therapie ; Keywords  Aortic aneurysm ; Quality of life ; Endovascular ; Conventional therapy
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Abstract   Patient satisfaction plays an increasing part in the analysis of the outcome of medical treatment. The aim of the study was to compare health-related quality of life in patients with abdominal aortic aneurysm after endovascular or conventional surgery. A total of 40 patients were included (20 treated by endovascular and 20 by conventional surgery). A questionnaire with 28 items similar to the SF-36 was answered during scheduled appointments. On the third postoperative day, the conventionally treated patients were more frequently confined to bed (80% vs. 32%) and complained of intervention-related pain (90% vs. 42%) and incisional pain (26% vs. 15%); 55% of the patients suffered from obstipation (vs. 5% of the endovascular group). Furthermore, the preoperative psychological stress seemed to be intensified. In comparable percentage, both the endovascular and conventionally treated patients were limited in social activities perioperatively. Sexual dysfunction was more frequent in the conventional group (33% vs. 13% three months postoperative). In addition, the conventionally treated patients were more limited in their physical activities (25% vs. 40%) and had more fear of ambulation (35% vs. 6%). The patients treated by an endovascular approach complained about frequent examinations (39% vs. 5%) that were often related to X-ray exposure (67% vs. 20%). All of the conventionally operated patients had a sense of improvement (vs. 89% of the endovascular group); nevertheless only 28% felt completely healthy, compared to 11% of the endovascular treated patients. Advantages of the endovascular treated patients were ”short hospital stay”, ”decreased pain”, ”smaller scars”, and a ”shorter confinement to bed”. After intervention the conventionally treated patients were more limited in almost all quality-of-life aspects. After 3 months, differences between the groups decreased except for sexual dysfunction and limited physical activities. The patients treated by endovascular surgery complained more about frequent X-ray examinations than the conventionally treated group.
    Notes: Zusammenfassung  Zur Bewertung eines Therapieerfolgs gewinnt der subjektive Aspekt der Patientenzufriedenheit zunehmend an Bedeutung. Ziel unserer Untersuchung war es, die medizinischen Aspekte der Lebensqualität vor, während und nach Behandlung eines infrarenalen Bauchaortenaneurysmas durch konventionelle oder endovaskuläre Operation zu vergleichen. Insgesamt 40 Patienten, 20 Patienten nach konventioneller und 20 Patienten nach endovaskulärer Bauchaortenaneurysmaausschaltung, die in unserer Klinik in dem Zeitraum 01.06.1997 bis 31.12.1998 operiert worden waren, erhielten einen in Anlehnung an den SF-36-Survey-Fragebogen entwickelten Fragenkatalog mit 28 Fragen über die perioperative Lebensqualität. Am 3. postoperativen Tag waren deutlich mehr konventionell operierte Patienten bettlägerig (80 vs. 32%), gaben stärkere Schmerzen (90 vs. 42%) sowie Narbenbeschwerden (26 vs. 15%) an und litten unter Verdauungsproblemen (55 vs. 5%). Sie waren außerdem vor der Operation durch den Eingriff psychisch belasteter als die Vergleichsgruppe. Die Patienten beider Gruppen fühlten sich perioperativ in einem vergleichbaren Prozentsatz in der Ausübung gesellschaftlicher Aktivitäten beeinträchtigt. In der konventionell operierten Patientengruppe waren postoperative Sexualfunktionsstörungen signifikant häufiger als bei den endovaskulären Patienten (33 vs. 13% 3 Monate postoperativ). Im postoperativen Intervall von 3 Monaten waren die konventionellen Patienten physisch weniger belastbar (25 vs. 40%) und hatten stärkere Angst, sich frei zu bewegen (35 vs. 6%); 39% der endovaskulären Patienten empfanden die postoperativen Kontrolluntersuchungen als belastend, 67% empfanden die Strahlenbelastung bei den Kontrollen als negativ (konventionell 5 bzw. 20%). Alle konventionell operierten Patienten hatten das Gefühl, dass das Bauchaortenaneurysma ausgeschaltet sei (endovaskulär 89%). Vollkommen gesund fühlten sich 3 Monate postoperativ lediglich 28% der konventionell operierten Patienten bzw. 11% der endovaskulären Patienten. Als größte Vorteile der endovaskulären Methode wurden ”kurzer Krankenhausaufenthalt”, ”wenig Schmerzen”, ”kleine Narbe” und ”kurze Bettlägerigkeit” genannt. Die konventionell therapierten Patienten sind in ihrer Lebensqualität perioperativ deutlich mehr beeinträchtigt als die endovaskulär behandelten. Nach 3 Monaten finden sich jedoch bis auf den Bereich der Sexualfunktionsstörungen, der physischen Belastbarkeit und der Bewegungsfreiheit keine signifikanten Unterschiede in beiden Kollektiven. Durch die regelmäßigen Nachuntersuchungen mit Strahlenexposition fühlen sich die endovaskulär behandelten Patienten stark belastet.
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  • 13
    Electronic Resource
    Electronic Resource
    Springer
    Der Chirurg 71 (2000), S. 1132-1137 
    ISSN: 1433-0385
    Keywords: Schlüsselwörter: Polytrauma ; Lebensqualität ; demographische Prädikatoren ; therapieabhängige Prädikatoren. ; Keywords: Multiple trauma ; Quality of life ; Demographic factors ; Injury related factors.
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Abstract. This study investigated multiple trauma patients, who were injured between 1991 and 1995 and treated in our department. The aim of this study was to identify the determinants of quality of life after multiple trauma. From a total of 186 patients 173 (93 %) were examined. The patients were asked to rate their quality of life according to the Nottingham Health Profile (NHP) and to a visual analogue scale (VAS). The VAS and the NHP isolated the age of the patients, the duration of artificial respiration, and the duration of rehabilitation as the predictors for a reduced overall quality of life. These results show that quality of life after multiple trauma not only depends on the severity of injury but also on demographic and psychosocial factors.
    Notes: Zusammenfassung. Ziel dieser Studie war es, Prädikatoren zu identifizieren, die die erreichbare Lebensqualität polytraumatisierter Patienten nach Abschluß ihrer klinischen und rehabilitativen Therapie determinieren. Es wurden 173 Patienten nachuntersucht, die in den Jahren 1991–1995 ein Polytrauma per definitionem erlitten hatten. Die posttraumatische Lebensqualität der Patienten wurde mit den international etablierten Meßinstrumenten Nottingham Health Profile (NHP) und einer visuellen Analogskala (VAS) bewertet. Über die VAS und den NHP ließen sich global das Alter der Patienten zum Zeitpunkt der Polytraumatisierung, die Beatmungsdauer und die Rehabilitationsdauer als hochsignifikante Determinanten der posttraumatischen Lebensqualität differenzieren. Diese Ergebnisse zeigen, daß die erreichbare Lebensqualität nach Polytrauma nicht nur von der Schwere der Verletzungen, sondern auch von vorbestehenden, therapeutisch nicht zu beeinflussenden demographischen und psychosozialen Daten abhängig ist.
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  • 14
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    Springer
    Der Urologe 39 (2000), S. 527-529 
    ISSN: 1433-0563
    Keywords: Schlüsselwörter Interstitielle Zystitis ; Epidemiologie ; Inzidenz ; Prävalenz ; Lebensqualität ; Keywords Interstitial cystitis ; Epidemiology ; Incidence ; Prevalence ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Abstract Available data on the epidemiology of interstitial cystitis (IC) are heterogeneous. Its prevalence ranges between 16 and 510 females/100,000 inhabitants and the incidence at 1.2–2.6/100,000 females with a mean age of 42–52 years. The disease tends to affect women (female:male ratio 9–10:1) and Caucasians (〉90%). The quality of life of patients suffering from IC is reduced to a significant degree in almost every aspect (work, social events, leisure activities). Financial expenses (medical as well as economical) associated with the disease are considerable. There is an enormous need to promote IC education and research in order to support affected patients effectively in the future.
    Notes: Zusammenfassung Die vorliegenden Daten zur Epidemiologie der interstitiellen Zystitis sind sehr heterogen. Die Prävalenz beträgt 16–510 Frauen/100.000 Einwohner, die Inzidenz liegt zwischen 1,2–2,6 /100.000 Frauen mit einem mittleren Alter bei Diagnosestellung von 42–52 Jahren. Die Geschlechterverteilung bevorzugt das weibliche im Verhältnis zum männlichen Geschlecht (9–10 Frauen/1 Mann) mit einer ethnischen Bevorzugung der Kaukasier (〉90%). Die Lebensqualität der betroffenen Patienten ist in fast allen Lebensbereichen (Arbeit, Soziales, Freizeit) signifikant eingeschränkt. Die Kosten (sowohl medizinisch als auch volkswirtschaftlich) sind erheblich. Es besteht ein enormer Weiterbildungs- und Forschungsbedarf, um durch einen besseren Kenntnisstand den Patient(inn)en mit IC wirkungsvoll helfen zu können.
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  • 15
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    Der Orthopäde 29 (2000), S. 987-993 
    ISSN: 1433-0431
    Keywords: Schlüsselwörter Behinderungen ; Integration von Behinderten ; Lebensqualität ; Gesellschaftliche Einstellungen ; Sport ; Paralympiade ; Keywords Disabilities ; Integration of disabled persons ; Quality of life ; Social attitudes ; Sports ; Paralympics
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Abstract It is important to reflect back on the enormous changes that have taken place in society over the past century that have affected the quality of life of disabled persons and societal attitudes towards disability. Although great progress has been made, these people remain marginalized and disadvantaged, and despite all the efforts of volunteers, professionals, and governments, we cannot categorically state that they are fully socially integrated. The term disability continues to carry an enormous stigma, and therefore it is important to examine the concept of social integration and the issues around it as they affect disabled persons and the role of the International Paralympic Committee (IPC) movement in achieving this end.
    Notes: Zusammenfassung Nach Ablauf des letzten Jahrhunderts ist es wichtig auf die enormen gesellschaftlichen Veränderungen zurückzublicken und darauf, wie dieser Wandel die gesellschaftlichen Einstellungen gegenüber Behinderungen und die Lebensqualität von Behinderten verändert hat. Obwohl große Fortschritte gemacht wurden sind Behinderte immer noch eine benachteiligte Randgruppe; trotz aller Anstrengungen von Freiwilligen, Fachpersonal und Regierungen kann man noch nicht behaupten, dass sie voll gesellschaftlich integriert sind. Der Begriff “Behinderung” beinhaltet weiterhin ein großes Stigma. Deshalb ist es wichtig, das Konzept und die verschiedenen Aspekte der sozialen Intergration von Behinderten zu prüfen und die Rolle des Internationalen Paralympischen Kommittees (IPC) zur Verwirklichung dieser Ziele darzustellen.
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  • 16
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    Ethik in der Medizin 12 (2000), S. 139-153 
    ISSN: 1437-1618
    Keywords: Key words: Motion pictures ; Medical ethics ; Physician-patient relationship ; Truth disclosure ; Informed consent ; Third-party consent ; Quality of life ; Euthanasia ; Terminally ill ; Schlüsselwörter: Film ; Medizinethik ; Arzt-Patient Beziehung ; Aufklärung ; Wahrheit sagen ; informed consent ; Lebensqualität ; Sterbehilfe ; Heilversuche
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine , Philosophy
    Description / Table of Contents: Zusammenfassung. Filme erzählen Geschichten. Spannungsvoll sind dabei vor allem jene Szenen, in denen Menschen vor Entscheidungskonflikte gestellt werden. Medizinethische Konflikte tauchen dabei nicht nur in Arztserien oder Krankheitsdarstellungen auf, sondern häufig in Genres, in denen diese Thematik kaum vermutet wird: Komödien, Western, Liebesfilmen, Gangster- und Kriminalfilmen. Indem Filme derartige Konflikte inszenieren und Lösungen bieten, greifen sie auf moralische Werthaltungen zurück und sind zugleich Seismographen für die gesellschaftliche Relevanz medizinethischer Themenfelder. Allerdings können im Film ethische Prinzipien der Entscheidungsfindung der Dramaturgie der Handlung zum Opfer fallen. Eine Analyse der dargestellten Konfliktsituationen ähnelt einer medizinethischen Fallbesprechung und stellt eine hilfreiche Ergänzung für die Vermittlung analytischer und kommunikativer Kompetenzen dar.
    Notes: Abstract. Movies tell stories. Thrilling are especially those situations, when people have to make ethical decisions. Issues of medical ethics crop up not only in hospital series, but often in genres where this subject is hardly to be supposed: comedies, westerns, love stories and gangster movies. Enacting these conflicts means offering a solution, and in doing so films refer to moral values and – at the same time – function as seismographs for the social relevance of bioethical topics. But it is possible that ethical principles of good decision-making fall victims to the drama of the story. Analysis of the portrayed conflict is similar to a case discussion in bioethics and represents a helpful adjunct to the procurement of analytical and communicative competences.
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  • 17
    ISSN: 1530-0358
    Keywords: Recurrent rectal cancer ; Cost-effectiveness analysis ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract PURPOSE: This study was performed to determine the quality of life and cost-effectiveness of therapeutic options for patients with locally recurrent rectal carcinoma, determined from the perspectives of patients and health care providers. METHODS: We reviewed the records of patients (N=68) with locally recurrent rectal carcinoma evaluated from 1992 through 1995. We constructed a decision-analytic model incorporating outcomes, survival, and costs. Utilities were elicited from convenience samples of health care providers and patients using the standard gamble technique. RESULTS: The median survival for patients undergoing surgical resection (n=40) was 42 months, compared with 16.8 months for patients undergoing diagnostic or palliative surgery (n=16) and 18.3 months for patients treated nonoperatively (n=12;P〈0.005). The mean cost of treatment per patient was $19,283 for the nonoperative group, $45,647 for the diagnostic or palliative surgery group, and $70,878 for the surgical resection group. The diagnostic or palliative surgical strategy was dominated by the nonoperative strategy because the former had greater costs with fewer health benefits. The incremental cost-utility ratio of surgical resection compared with nonoperative management using health care provider utilities was $109,777 per quality-adjusted life year gained; it was reduced to $56,698 using per quality-adjusted life year using mean patient utilities. CONCLUSIONS: Patients with recurrent rectal carcinoma view surgery and morbidity to be less severe than health care providers. Diagnostic or palliative surgery is expensive and affects quality-adjusted survival adversely compared with nonoperative therapy. Surgical resection may be a cost-effective use of resources, particularly when cost-effectiveness is calculated using patient preferences.
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  • 18
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    Diseases of the colon & rectum 43 (2000), S. 650-655 
    ISSN: 1530-0358
    Keywords: Loop ileostomy ; Loop colostomy ; Quality of life ; Stoma complications
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract PURPOSE: The hypothesis is that the impact of a temporary stoma on a patient's daily life is determined by complications and related stoma care problems. METHOD: A prospective clinical trial was performed, studying complications and social well-being of 37 patients with loop ileostomy and 39 patients with a loop colostomy (randomly assigned comparison). Patients were categorized according to degree of social restriction. The association between the degree of social restriction and the presence of stoma care problems and complications was assessed. Follow-up was scheduled every three months until the stoma was closed (94 percent). RESULTS: There is no relation between stoma type (ileostomy or colostomy) and degree of social restriction (chi-squared test,P=0.42). The more stoma care problems or complications seen, the higher the degree of social restriction: significantly more stoma care problems were seen in the completely isolated group of patients when compared with the patients who were less socially restricted (Spearman correlation coefficient 1=0.35,P=0.003). Especially stoma leakage, peristomal skin irritation, dietary prescriptions, retraction, and prolapse of the stoma have significant impact on the patient's daily life. CONCLUSION: Stoma surgery has a great influence on a patient's daily life. There is a clear relation between the number of stoma care problems and the degree of social restriction. Follow-up of stoma patients under close surveillance of stoma care nurse to minimize stoma care problems and a careful surgical technique are advocated for good stoma care.
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  • 19
    ISSN: 1530-0358
    Keywords: Fecal incontinence ; Quality of life ; Health surveys ; Reproducibility of results ; Outcome assessment (health care)
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract PURPOSE: This goal of this research was to develop and evaluate the psychometrics of a health-related quality of life scale developed to address issues related specifically to fecal incontinence, the Fecal Incontinence Quality of Life Scale. METHODS: The Fecal Incontinence Quality of Life Scale is composed of a total of 29 items; these items form four scales: Lifestyle (10 items), Coping/Behavior (9 items), Depression/Self-Perception (7 items), and Embarrassment (3 items). RESULTS: Psychometric evaluation of these scales demonstrates that they are both reliable and valid. Each of the scales demonstrate stability over time (test/retest reliability) and have acceptable internal reliability (Cronbach alpha 〉0.70). Validity was assessed using discriminate and convergent techniques. Each of the four scales of the Fecal Incontinence Quality of Life Scale was capable of discriminating between patients with fecal incontinence and patients with other gastrointestinal problems. To evaluate convergent validity, the correlation of the scales in the Fecal Incontinence Quality of Life Scale with selected subscales in the SF-36 was analyzed. The scales in the Fecal Incontinence Quality of Life Scale demonstrated significant correlations with the subscales in the SF-36. CONCLUSIONS: The psychometric evaluation of the Fecal Incontinence Quality of Life Scale showed that this fecal incontinence-specific quality of life measure produces both reliable and valid measurement.
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  • 20
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    Annals of surgical oncology 7 (2000), S. 367-375 
    ISSN: 1534-4681
    Keywords: Outcomes ; Surgical oncology ; Review ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Background: There have been significant developments and advances in the area of outcomes research in the past 25 years. Unfortunately, many surgical oncologists may not have a clear concept of outcomes research and the methodology involved. Methods: A literature-based review article was done that included an overview of outcomes research, and study design and types, outcome measures, outcome instruments, and sources of outcome data were examined. In addition, we reviewed small area variation(volume outcome analysis as well as quality-of-life studies and their applications in surgical oncology clinical investigation. Specific examples from surgical oncology were identified. Results: As the costs of health care have increased, so has the emphasis on measuring outcomes of medical and surgical care to determine the quality and appropriateness of care. Marked variations in a variety of outcomes after oncological procedures have been attributed to individual surgeon and institution characteristics. Because much of the clinical surgical oncology literature deals only with the traditional mortality and morbidity outcomes, a more comprehensive examination of patient outcomes is required to fully evaluate the impact of patient management decisions. Health-related quality of life can be measured and analyzed in several ways and decisions regarding the use of such methodology are dependent on multiple factors. Conclusions: Surgical oncologists should recognize that the true value of their interventions requires systematic and comprehensive examination of patient outcomes.
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  • 21
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    Quality of life research 9 (2000), S. 129-137 
    ISSN: 1573-2649
    Keywords: EORTC QLQ-C30 ; Gynecological cancer ; Psychometric property ; Quality of life ; Standard Chinese
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The majority of quality of life (QOL) questionnaires have been developed and used in English-speaking or Western European countries. The aims of this study were to provide the Standard Chinese version of the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30 version 2.0), and evaluate its psychometric properties. The translation process included independent translation, back translation, a pilot test with gynecological cancer patients, and a review and approval by the original developers. Participants in the major study included gestational trophoblastic disease patients (n = 68), ovarian cancer patients (n = 105), and other types of gynecological cancer patients (n = 18). The average completion time of the Standard Chinese version was 8.1 ± 2.9 min. All item-subscale correlation coefficients exceeded the criterion of item-convergent validity (r 〉 0.40) except item 1, 5, 20, and 25, and all items correlated significantly higher with their own subscale than with other subscales except item 1, 20, and 25. The correlation coefficients among all subscales were significant but modest (r = 0.40–0.70). Seven out of nine subscales met the minimal standards of reliability (Cronbach's α 〉 0.70). In conclusion, the Standard Chinese version of the EORTC QLQ-C30 is a valid instrument overall in assessing the QOL of Chinese gynecological cancer patients.
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  • 22
    ISSN: 1573-2649
    Keywords: Cancer ; Content analysis ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Although the subjective nature of quality of life is generally accepted, less attention has been paid to the procedure of selecting domains to be explored with questionnaires. To explore what contributes to cancer patients' quality of life, a survey was conducted with the aim of identifying contents of quality of life using cancer patients as `experts'. A questionnaire with open-ended items aimed at exploring the meaning of quality of life and at determining the contents of health and not health related quality of life, was submitted to a sample of cancer patients stratified by residence, cancer site and stage of disease. The 248 questionnaires received were transcribed and broken down into phrases to allow coding. A content analysis was performed, using as a conceptual framework, the domains identified by the Italian Society of Psycho-Oncology. Overall, 43 domains and a list of symptoms were identified. The two most frequently reported symptoms were pain (21.4% patients) and fatigue (14.1% patients). Social relationships and psychological domains were heavily represented. Twenty sub-domains related to the domain `psychological well-being'. This study suggests that information on the content of quality of life questionnaires to be submitted to people affected by a specific disease, should be derived by studying people suffering the specific disease. These results reinforce the criticism that available quality of life instruments are more likely to reflect the perspective of health professionals than patients.
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  • 23
    ISSN: 1573-2649
    Keywords: Proxy measures ; Quality of life ; Surrogacy
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract In studies of the effect of cancer treatment in the advanced disease setting, researchers have attempted to avoid missing data for quality of life (QOL) assessments by either substituting proxy for patient assessments from the outset or by interspersing proxy measures when patients are unable to respond. Although poor agreement between patient and proxy assessments has been amply demonstrated in the literature, interest in using proxy measures persists. Completion of the Spitzer QL-Index by a small sample of patients with brain metastases and family member proxies provided data for evaluating the ability to substitute proxy for patient QOL assessments. These data cannot address treatment efficacy due to the modest sample size. Rather, the analyses serve to alert researchers to the important distinction (in a clinical trial setting) between agreement and the use of the proxy as a surrogate. We present several methods for evaluating the accuracy of proxy measures and for identifying other sources of error and bias that may vary with time or with treatment arm. Lin's concordance correlation coefficient suggests that proxies are generally a poor substitute for capturing a patient's perspective of his/her QOL. A longitudinal analysis suggests that the use of proxy rather than patient responses could lead to different conclusions concerning radiation therapy's effect on QOL.
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  • 24
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    Quality of life research 9 (2000), S. 207-218 
    ISSN: 1573-2649
    Keywords: Diabetes ; DTSQ ; LQD ; Non-insulin-dependent diabetes ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The purpose of the study was to find out which of five Quality of life (QoL) questionnaires are reliable and valid for evaluating the QoL in German patients with type 2 diabetes: the Diabetes Treatment Satisfaction Questionnaire (DTSQ), the Well-Being Questionnaire (WBQ), the Short Form SF36 of the Medical Outcome Study (SF36), the Diabetes39 and the Quality of Life with Diabetes (LQD) questionnaire. A stratified sample of 144 patients who were attending one of nine special hospitals for people with diabetes at the time of the study were given the questionnaires twice. Most of the scales of the questionnaires had internal consistencies (α) of above 0.80 as recommended; the retest reliabilities were lower, especially for scales evaluating satisfaction with levels of blood sugar and treatment in general. A factor analysis of all scale scores yielded four factors: (1) physical aspects, (2) well-being and satisfaction, (3) diabetes-specific stress, and (4) treatment satisfaction. Construct validity showed frequency of hypoglycemias, neuropathies, treatment with insulin and number of late complications to have a negative impact on QoL scores. No single questionnaire covered all relevant aspects of the QoL of subjects with type 2 diabetes. Thus, quality of life in diabetic people should be evaluated with scales representing the cognitive dimensions found in this study so as not to miss significant aspects.
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  • 25
    ISSN: 1573-2649
    Keywords: Captopril ; Heart failure ; Losartan ; Missing data ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Objective: To measure health-related quality-of-life (HRQoL) in elderly symptomatic heart failure patients following treatment with an angiotensin II receptor antagonist (losartan) vs. an angiotensin-converting-enzyme (ACE) inhibitor (captopril). Methods: Patients (age ≥65 years) were randomised to losartan, titrated to 50 mg once daily, or captopril, titrated to 50 mg three times daily, as tolerated. Sickness Impact Profile (SIP) and Minnesota Living with Heart Failure (LIhFE) questionnaires were administered at baseline, weeks 12 and 48. Composite hypothesis testing of change in HRQoL from baseline for completers, and withdrawal for unfavourable events (death, clinical/laboratory adverse experience) was used to account for differential dropout rates. Results: In 203 patients completing the substudy (week 48), significant and comparable improvements in HRQoL from baseline were observed for both treatment groups (p ≤ 0.001). Although there was a trend favouring losartan vs. captopril for the composite HRQoL endpoint (unadjusted p = 0.018, one-sided), this was not considered significant after adjusting for multiple testing. Significantly more captopril patients in the substudy subset withdrew for unfavourable reasons (19.6 vs. 10.9%, p = 0.038). Conclusions: Significant improvements in HRQoL were observed in elderly patients with symptomatic heart failure treated with losartan and captopril long-term. A trend favouring losartan in the composite measure of drug tolerability/quality of life was not significant, but losartan was generally better tolerated than captopril in that significantly fewer losartan patients discontinued therapy.
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  • 26
    ISSN: 1573-2649
    Keywords: Fluctuations ; Health state utilities ; Parkinson's disease ; Preference measurement ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The purpose of this study was to derive patient preferences and utilities for outcomes associated with treatment of motor fluctuations, or ‘off-time’ for patients with Parkinson's disease (PD). Visual analog scale (VAS) and standard gamble (SG) approaches were used with 60 patients to determine patient preferences and utilities for 10 health state descriptions. Health state descriptions were categorized according to two factors: disease severity, and proportion of the day with ‘off-time’. There were two representative levels of disease severity, based on Hoehn and Yahr stages 1.5 and 2.5: unilateral disease with no postural instability, and bilateral disease with some postural instability. These severity levels were combined with five levels of ‘off-time’ per day ranging from none to 〉 75% of the day. Patients' mean preference or utility for their own current health ranged from 0.65 ± 0.20 (VAS) to 0.74 ± 0.22 (SG). Patients assigned the lowest mean values to the health state description for Hoehn and Yahr stage 2.5 with ‘off-time’ for 〉 75% of the day (VAS: 0.17 ± 0.17; SG: 0.49 ± 0.27). The highest mean values were assigned to Hoehn and Yahr stage 1.5 with no ‘off-time’ (VAS: 0.83 ± 0.17; SG: 0.85 ± 0.18). The results of this study indicated patients with PD would likely seek treatment that would minimize the amount of ‘off-time’ experienced per day, and that patients were relatively risk averse.
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  • 27
    ISSN: 1573-2649
    Keywords: Diabetes mellitus ; Functional insulin treatment ; Lifestyle ; Quality of life ; Randomised cross-over study ; Treatment satisfaction
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Even a small improvement in satisfaction with treatment for a chronic disease can be valuable. However, sensitive measurements instruments are needed to assess the effects of treatment changes in patients already well satisfied with baseline treatment. Such instruments were thought to be necessary to deal with ceiling effects in scores of satisfaction with functional insulin treatment (FIT) accommodating full flexibility of food intake and lifestyle in diabetes by manipulation of insulin (FIT; Howorka etal. 2000). The Status(S) version of the Diabetes Treatment Satisfaction Questionnaire (DTSQ, Bradley 1994) was extended with items measuring specific components of FIT and its psychometric properties investigated in a validation study with 171 FIT patients with diabetes. A new Change(C) version of DTSQ extended for FIT was used together with the DTSQ(S) by 52 participants in a subsequent randomised cross-over study involving new fast-acting lispro vs. regular insulin, where treatment satisfaction was the primary outcome variable. Insulin lispro use improved satisfaction (p ≤ 0.001) both, on classical and extended versions of DTSQ(S) and (C), despite high baseline levels of satisfaction. However, the DTSQ(C) augmented the effects of lispro (p = 0.0001) apparent on DTSQ(S) scores and revealed significant treatment effects (p ≤ 0.01) not significant with DTSQ(S). In parallel, glycaemic control improved with lispro (e.g., HbA1c, p = 0.023). Improved satisfaction with treatment was more apparent with DTSQ(C) than DTSQ(S) in patients who at baseline were at or near ceiling for treatment satisfaction.
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  • 28
    ISSN: 1573-2649
    Keywords: Determinants ; Head and neck cancer ; Optimism ; Outcome ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The aim of this study was to investigate the role of dispositional optimism (DO) as a predictor of health-related quality of life (HRQL) in a sample of upper aerodigestive tract cancer (UADT) patients. A prospective observational study design was used with a cohort of patients from one centre. DO was evaluated using a French version of the Life Orientation Test (the FLOT) translated and validated for this study. HRQL was evaluated using the EORTC QLQ-C30 prior to and 3 months following treatment. The association between FLOT ratings and HRQL was evaluated using linear multiple regression analysis and a two-way ANOVA with repeated measures. Baseline data were gathered on 101 subjects and follow-up data on 88 of these. The sample was dichotomized around the median FLOT score creating ‘optimist’ and ‘pessimist’ groups. Before treatment, optimists reported better role, cognitive and emotional function, less pain and fatigue and a better global rating of HRQL than did pessimists. Following treatment, optimists reported better role and cognitive functioning, less pain and better global HRQL than did pessimists. Pessimists reported a greater deterioration in the role domain following treatment than did optimists. At no point did pessimists rate HRQL better than optimists. The results suggest that optimism is associated with better HRQL in French UADT cancer patients.
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  • 29
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    Quality of life research 9 (2000), S. 931-940 
    ISSN: 1573-2649
    Keywords: HIV/AIDS ; Measurement ; Quality of life ; Women
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Although women had been under recognized in the literature on HIV/AIDS, increasing numbers of studies have focused on the lives and experiences of women living with HIV/AIDS. Areas of research in which the study of women and HIV continues to be noticeably lacking include health related quality of life (HRQOL). This paper describes HRQOL in an inner city sample of 287 HIV positive non-pregnant women, interviewed as part of a larger multi-site CDC funded study of the reproductive health of women. The average age of the respondents was 33 years and women had known their HIV status an average of 41 months. HRQOL was assessed using a 17-item modified version of the Medical Outcomes Study-HIV Health Survey and demonstrated acceptable internal consistency (0.64-0.89) and variability. Women in our study were similar to other HIV-positive female samples and reported lower levels of well-being and functioning than some HIV-positive male samples. Women's responses to individual items and areas of potential need for health care are discussed. Examination of HRQOL in women with HIV can aid in the comparison of how women and men are affected by HIV and can help health care professionals identify needed services and include possible interventions to promote quality of life.
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  • 30
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    Quality of life research 9 (2000), S. 721-731 
    ISSN: 1573-2649
    Keywords: Measures ; Menopause ; Methodology ; Quality of life ; Symptoms
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The methodology in studies of the menopausal transition involves a consideration of social, statistical, and psychometric issues. Social issues are relevant on two levels. One is based upon principles of good practice in research on women and health that have been articulated at the international level. The other social level involves a consideration of the aims of the study and how these aims are implemented in the measures that are used, both for the symptoms of menopause and for the quality of life of the women involved in the research. We review the basic principles and issues related to sampling of population studies, physiological changes, and measurement of quality of life. Three recent measures of quality of life designed for studies of the menopause are then briefly reviewed.
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    Quality of life research 9 (2000), S. 755-761 
    ISSN: 1573-2649
    Keywords: Disability ; Exercise ; Osteoporosis ; Quality of life ; Spinal fractures
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract There continues to be a lack of consensus on the meaning and definition of the concept of quality of life. An implicit distinction for many measures of quality of life is from measures of health status based upon the presence of disability in functional domains. A further assumption in many scales is that quality of life is a unitary construct. The Osteoporosis Functional Disability Questionnaire (OFDQ) assessed some domains of function but is not unidimensional. It was developed to evaluate the progress and outcome of a structured exercise program for people with spinal compression fractures due to osteoporosis. The OFDQ assesses five domains relevant to the pain and disability in this population: pain, depression, function in performing common daily activities, socialization, and confidence in the exercise program. Longitudinal data from three cases are used to illustrate the utility of this multidimensional approach in evaluating the outcome of exercise treatment and understanding important aspects of the subjective life of people with osteoporosis.
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  • 32
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    Quality of life research 9 (2000), S. 13-27 
    ISSN: 1573-2649
    Keywords: Quality of life ; Questionnaire design ; Survey methods
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Researchers developing or using health-related quality of life (HRQOL) instruments can benefit from knowledge of state-of-the-art formatting methods for self-administered questionnaires. Three objectives in formatting design are: (1) to reduce errors in respondent navigation through the questionnaire that lead to item non-response and question misinterpretation; (2) to reduce respondent and administrative burden; and (3) to enhance respondent motivation in question answering and compliance with the request to participate. Based on an extensive literature review to identify techniques that have been shown to meet these objectives, we developed specific guidelines for HRQOL instruments concerning all aspects of questionnaire formatting. These guidelines represent well-motivated recommendations for improving HRQOL instruments, although their overall impact has not been empirically tested. We applied the guidelines to several HRQOL instruments that are widely used internationally, and obtained approval from the developers for all formatting changes to their instruments. Applying cognitive design principles and empirically substantiated formatting techniques produces an HRQOL instrument formatting with six critical attributes: simple, consistent, organized, natural, clear and attractive. The present paper contributes to the emerging research literature on the cognitive processes by which respondents answer HRQOL questions and demonstrates how `cognitive aspects of survey methodology' research can improve HRQOL data collection efforts.
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  • 33
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    Quality of life research 9 (2000), S. 65-73 
    ISSN: 1573-2649
    Keywords: Cancer patients ; EORTC QLQ-C30 ; Longitudinal assessments ; Prognosis groups ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The present study examines differences in quality of life between two points in time in a heterogeneous sample of cancer patients with different prognoses. The original sample comprised 253 patients, while the follow-up data obtained 3–4 years later included 75 patients, that is, 92% of the survivors. All the patients completed a questionnaire including the EORTC QLQ-C30. The research questions focus on overall changes in quality of life, and whether patients with a good prognosis would show less negative changes in quality of life than patients with a poor prognosis. The overall observed changes in quality of life were surprisingly small over a 3–4 year period. This study shows that prognoses do predict changes in social functioning and in some physical aspects of quality of life over a 3–4 year period after the assessment of prognoses by physicians. Prognoses did not, however, predict changes in psychological aspects of quality of life.
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  • 34
    ISSN: 1573-2649
    Keywords: Bladder cancer ; Cystectomy ; Postoperative adjustment ; Prospective study ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract This study reports the changes in the quality of life (QoL) of 44 patients observed prospectively from pre-surgery to one year post-surgery. Two kinds of surgeries were compared: continent and incontinent urinary diversion. In most areas the QoL returned to the prior level within one year after surgery. However, patients were restricted in their physical activity, sexual activity, and emotional well-being. Using individual weights for different aspects of life (Fragen zur Lebenszufriedenheit – Module FLZM), QoL was higher than when using an unweighted measurement (Short Form 36, MOS). Two trends for the different developments in the QoL were established: general life satisfaction and social functioning tended to improve after a continent diversion but decreased after an incontinent diversion. The perceived global satisfaction with both kinds of diversion was high – 75% of the patients would choose the same kind of diversion again.
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  • 35
    ISSN: 1573-2649
    Keywords: Acquired immune deficiency syndrome (AIDS) factor analysis ; Functional status ; Health status ; Health status indicators ; Human immunodeficiency virus (HIV) ; Mental health ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract To examine the effect of HIV status, symptomatology and CD4+ lymphocyte level on health-related quality of life, the Medical Outcomes Study Short-Form Health Survey (SF-36) was administered to 2,295 gay men enrolled in the Multicenter AIDS Cohort Study (MACS) in 1994. Distinct physical and mental health factors of the SF-36 were found. Seropositive asymptomatic individuals and seropositive individuals with CD4+ lymphocytes ≥ 500/mm3 scored as well as seronegative participants on all of the mental health domain scales, but lower on the general health perceptions and physical health composite score. Seropositive individuals with at least one symptom or with CD4+ lymphocytes below 200/mm3 scored significantly lower on all of the SF-36 scales and summary scores than seronegative controls. The SF-36 was found to exhibit similar mental and physical health factors for an adult gay male population to that previously seen in general population samples and in patient groups with other diseases. In conclusion, HIV-positive men who are asymptomatic or have CD4+ lymphocytes above 500/mm3 have similar perceived mental health but worse perceived physical health than seronegative men. HIV-positive men who are symptomatic or have CD4+ lymphocytes below 200/mm3 have worse perceived mental and physical health than seronegative men.
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  • 36
    ISSN: 1573-2649
    Keywords: Coronary artery bypass grafting (CABG) ; Ejection fraction ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Aim: To describe the relief of symptoms and improvement in Quality of Life (QoL) 5 years after coronary artery bypass grafting (CABG) in relation to preoperative ejection fraction (EF). Methods: Patients who underwent CABG between 1988 and 1991 in western Sweden were approached with an inquiry prior to surgery and 5 years after the operation. Quality of Life was estimated with three different instruments: Physical activity score, Nottingham Health Profile and Psychological General Well-being Index. Results: Among all patients who underwent CABG (n = 1904) the 5-year mortality rate was 27% in those with EF 〈 0.40 and 12% in those with EF ≥ 0.40 (p 〈 0.0001). In all, 849 patients, of whom 58 (7%) had EF 〈 0.40 participated in the evaluation. Neither physical activity, symptoms of chest pain, dyspnea nor any indices of QoL were significantly associated with preoperative EF. Improvement in physical activity, symptoms of chest pain and dyspnea and various estimates of QoL appeared similar and marked regardless of preoperative EF. Conclusion: Among survivors there was no association between preoperative EF and symptoms or various estimates of QoL 5 years after CABG. Improvement in symptoms and QoL were not dependent on preoperative EF.
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  • 37
    ISSN: 1573-2649
    Keywords: Coping style ; Personality ; Quality of life ; Statistical-modelling
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Objective: To determine the role of health status, personality and coping style, on self-report health-related quality of life (QoL). Methods: Participants were HIV seropositive individuals at all disease stages from three samples (a) gay/bisexual men from the UK, (b) injecting drug users from the UK, (c) injecting drug users from Italy. All participants completed questionnaires evaluating QoL, personality, coping style and social support. Explicit models of the relationships between the measured variables based on a review of the literature were tested using structural equation modelling. Results: Health status was modestly associated with the physical but not the psychological aspects of QoL (β = 0.44). Neuroticism was strongly associated with psychological QoL (β = −0.73) but only weakly with physical QoL (β = −0.21). The samples did not differ in either the pattern or the magnitude of these relationships. Mediating factors such as coping style, social support and other personality variables had only a weak influence on the role of Neuroticism. Conclusions: Neuroticism had a strong influence on health-related QoL that was independent of health status. Neuroticism was more strongly associated with the psychological aspects of QoL than health status. Coping styles and the other psychological variables assessed had only a weak mediating influence on this relationship.
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  • 38
    ISSN: 1573-2649
    Keywords: Prostate cancer ; Psychometrics ; Quality of life ; Questionnaire
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Background: Quality of life in prostate cancer patients with clinically localized disease has become the focus of increasing attention over the past decade. However, few instruments have been developed and validated to assess quality of life specifically in this patient population. Objective: The purpose of this investigation was to create a comprehensive, multi-scale quality of life instrument that can be tailored to the needs of the clinician/investigator in multiple settings. Design, subjects, and measures: Patients diagnosed with clinically localized prostate cancer were mailed a questionnaire consisting of new and previously validated quality of life items and ancillary scales. Data from returned questionnaires were analyzed and used to create a multi-scale instrument that assesses the effects of treatment and disease on urinary, sexual, and bowel domains, supplemented by a scale assessing anxiety over disease course/effectiveness of treatment. The instrument was then mailed to a second sample of prostate cancer patients once and then again two weeks later to assess test-retest reliability. To assess feasibility in clinical settings, the instrument was self-administered to a third patient sample during a urology clinic visit. Results: All scales exhibited good internal consistency and test-retest reliability, convergent and discriminant validity, and significant correlations with disease specific, generic health-related, and global measures of quality of life. Men with greater physiologic impairment reported more limitations in role activities and more bother. Scales were also able to differentiate patients undergoing different therapies. All scales exhibited negligible correlations with a measure of socially desirable responding. Additionally, the instrument proved feasible when used as a self-administered questionnaire in a clinical setting. Conclusions: The current instrument possesses brief multi-item scales that can be successfully self-administered in multiple settings. The instrument is flexible, relatively quick, psychometrically reliable and valid, and permits a more comprehensive assessment of patients' quality of life.
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  • 39
    ISSN: 1573-2649
    Keywords: Quality of life ; Radiotherapy ; Response shift
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract In medicine, response shift refers to a change — as a result of an event such as a therapy — in the meaning of one's self-evaluation of quality of life. Due to response shift, estimates of side effects of radiotherapy may be attenuated if patients adapt to treatment toxicities. The purpose of our study was to assess to what extent two components of response shift, scale recalibration and changes in values, occur in early-stage breast cancer patients undergoing radiotherapy and to examine what the implications would be for treatment evaluation. In the week before start of post-operative radiotherapy, 46 patients filled out a questionnaire consisting of quality of life items of the SF-36 and the Rotterdam symptom checklist (RSCL) (pretest). During radiotherapy, patients were asked to fill out the questionnaire twice: a posttest (quality of life at that moment) and a thentest (quality of life before treatment, retrospectively), supposedly using the same internal standard. Changes in values were studied by asking the patients on the two occasions to rate the importance of seven attributes representing various domains of quality of life. Patients were also asked whether their quality of life with respect to the measured aspects had changed since the pretest (subjective transition scores). Significant scale recalibration effects were observed in the areas of fatigue and overall quality of life. When the groups were divided according to their subjective transition scores, significant scale recalibration effects were found in case of worsened quality of life for fatigue and overall quality of life, and in case of improved quality of life for fatigue and psychological well-being. The mean importance ratings remained fairly stable over time, except for ‘skin reactions’, which obtained less importance at the end of radiotherapy than before. In conclusion, effects of scale recalibration were observed that would have significantly affected quality of life evaluations, in that the impact of radiotherapy on fatigue and overall quality of life would have been underestimated. Changes in internal values were observed only for ‘skin reactions’.
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  • 40
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    Quality of life research 9 (2000), S. 39-53 
    ISSN: 1573-2649
    Keywords: Disease-specific scale ; Generic scale ; Onychomycosis ; Quality of life ; Reliability ; Responsiveness ; Validity
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract According to survey research, onychomycosis, a fungal infection of the toenail or fingernail, affects quality of life including physical and social functioning and emotional health. We developed an onychomycosis disease-specific questionnaire (ODSQ) that sensitively assessed symptom distress, functional impact, and social stigma associated with the disease. Samples of patients enrolled in a randomized controlled clinical trial were used for the psychometric evaluations. The multi-item scales were internally consistent (α ≥ 0.80) and reproducible (ICC 〉 0.85). Interscale correlations between the ODSQ and generic scales were moderate and consistent with the hypothesized magnitude and directions. Construct validation, employing known groups analysis, supported the hypothesized impact of onychomycosis on three domains of quality of life: physical functioning, emotional health, and social functioning. Significant differences were found between clinically “cured”, “improved”, or “failed” patients, and between mycologically “eradicated” and “persistent” patients. The ODSQ was responsive to clinical change and more sensitive than derived Medical Outcomes Study Short Form-36 scales. The ODSQ provides reliable, validated and responsive information about the consequences of onychomycosis and its treatment.
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  • 41
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    Quality of life research 9 (2000), S. 29-38 
    ISSN: 1573-2649
    Keywords: Child ; EuroQol ; Imperforate anus ; Proxy ; Quality of life ; TACQOL
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Objective: To investigate the feasibility and validity of a proxy version of the EuroQol in children treated for imperforate anus. Methods: Patients included were between 1 and 51 years of age. Instruments included were the EuroQol, the TACQOL and a disease specific questionnaire, the Langemeijer Stool Questionnaire. Patients older than 15 years filled in all questionnaires themselves, in the age groups 5–10 and 11–15 a parent administered the questionnaires. Feasibility was judged on the number of missing values. In search of validity, EuroQol scores were compared with the prevalence of disease symptoms (convergent validity) and with the TACQOL (construct validity). Results: The number of missings was not related to age. The disease specific questionnaire correlated significantly with the EQvas from 11 years on and with the EQ-5Dindex from 5 years on. The mean correlation between contextual similar domains of the EuroQol and the TACQOL was −0.55. The correlation between different domains was −0.32. Conclusion: The results support the idea that the use of a proxy version of the EuroQol is feasible and valid. The convergent validity of the EQvas was supported from 11 years on. The EQ-5D showed good construct and convergent validity from 5 years on.
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  • 42
    ISSN: 1573-2649
    Keywords: Health status ; Mode of administration ; Parkinson's disease ; Psychometrics ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract This study evaluated the feasibility and psychometric properties of self-completed and telephone interview versions of a patient health-related quality-of-life (HQL) questionnaire for Parkinson's disease that included the SF-36 Health Survey (SF-36), the Parkinson's Disease Questionnaire (PDQ-39), and the Medical Outcomes Study Sexual Function Survey. Parkinson's disease patients (n = 150) completed the questionnaire twice: once at the study site and once over the telephone in a randomized order. Ninety-four percent of enrolled patients completed the first HQL assessment and 88% completed both assessments. Cronbach's α exceeded 0.70 for all scales except for the self-completed PDQ-39 Social Support subscale (0.57) and the telephone interview PDQ-39 Social Support (0.60) and Cognitions (0.67) subscales and the SF-36 General Health (0.60) and Social Function (0.61) subscales. There were no statistically significant differences in mean HQL scale scores across the two modes of administration. Mean scores for 3 of the PDQ-39 subscales and the Summary Index were significantly poorer (p 〈 0.05) for patients at later clinical stages. Similarly, patients with dyskinesias reported significantly poorer scores for 4 of the PDQ-39 subscales and the Summary Index and patients with self-reported comorbidities reported poorer SF-36 Physical Function and General Health subscale scores than patients without dyskinesias and comorbidities, respectively. This study suggests that the self-completed and telephone interview versions of the patient HQL questionnaire are feasible and valid for future clinical trial applications.
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  • 43
    ISSN: 1573-2649
    Keywords: Chronic health problems ; General population ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Purpose: To examine HRQoL measured by EORTC QLQ-C30 with respect to an increasing number of self-reported chronic health problems in the general Swedish population and to study the association between HRQoL, chronic health problems and age, gender, income, marital status and employment status. Method: A postal survey among a large random sample of 4000 adults aged 18–79 years. The study material contained EORTC QLQ-C30 core questionnaire supplemented by a sociodemographic questionnaire including questions about 13 chronic health problems of which four categories, `No', `Few', `Some' or `A lot of' chronic health problems were constructed. Results: Multiple chronic health problems were significantly associated with reduced HRQoL. The increased number of chronic health problems was also associated with age. When the number of chronic health problems was accounted for, the influence of age diminished. Low income and unemployment were associated with greater decline in HRQoL with respect to increasing number of problems among the respondents in working age. Conclusion: The impact of increased number of chronic health problems had varying consequences in different age groups. Moreover, sociodemographic and economic factors showed to interact differently with chronic health problems and HRQoL in various age groups. It appears from our results that an assessment and a careful consideration of these factors will be valuable in order to facilitate the interpretation of the effects of cancer and treatment on long-term HRQoL of cancer patients.
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  • 44
    ISSN: 1573-2649
    Keywords: Anorexia/cachexia ; Quality of life ; Scale validation
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Purpose: The original Functional Assessment of Anorexia/Cachexia Therapy (FAACT) was designed to measure general aspects of quality of life (QOL) as well as specific anorexia/cachexia-related concerns. Our primary purpose was to reduce the number of anorexia/cachexia subscale items in a manner that either retains or improves reliability, validity and precision. Methods: The FAACT was administered using an interactive computer program that allowed immediate entry of the data. A total of 213 patients were recruited. Results: A combined empirical and conceptual approach led to the reduction of the anorexia/cachexia subscale (A/CS) from 18 to 12 items. A 26-item trial outcome index (TOI) combining physical well-being (PWB), functional well-being (FWB), and the A/CS-12 was highly reliable and sensitive to change in performance status rating (PSR). We found that PWB, FWB, and A/CS-12 subscales performed differently. Specifically, PWB and FWB scores decreased in patients whose (PSR) worsened. However, although A/CS-12 scores were responsive to change in PSR over time, average A/CS-12 scores of all patients, even those whose PSR worsened, improved over the course of treatment. Conclusions: Elimination of six items from the anorexia/cachexia subscale of the FAACT was accomplished without loss of internal consistency or sensitivity to change in performance status. The A/CS-12 subscale provides unique, important information not captured by a generic chronic illness questionnaire.
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  • 45
    ISSN: 1573-2649
    Keywords: Assessment ; EORTC QLQ-H&N35 ; Laryngeal cancer ; Quality of life ; Questionnaire ; Validation
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The aim of this study was to test the validity and reliability of the European organization for research and treatment of cancer (EORTC) quality of life questionnaire (QLQ)-head and neck (H&N) 35 in Italian laryngeal cancer patients. The original questionnaire was developed by the EORTC quality of life (QoL) study group and tested in H&N cancer patients from Norway, Sweden, and the Netherlands. The Italian translation of the questionnaire used in this study was made by a team of the CRO, National Cancer Institute, using a double-back translation method between independent translators. The translated EORTC QLQ-H&N35 was given to 99 patients with H&N cancer who had undergone total laryngectomy 1–26 years before and had been then treated with radiotherapy and, in some cases, chemotherapy. The questionnaire was re-administrated to 33 patients after 1 month to test its stability over time. It was structurally made up of seven scales (pain, swallowing, sense, speech, social eating, social contact, and sexuality) and 11 single items that considered the most important clinical aspects characterizing the QoL in H&N cancer patients. The statistical analysis of the indexes of validity and reliability confirmed the results obtained with other linguistic versions of the questionnaire. Our Italian version of the EORTC QLQ-H&N35 proved to be a statistically valid instrument to assess QoL in laryngectomized patients.
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  • 46
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    Quality of life research 9 (2000), S. 161-176 
    ISSN: 1573-2649
    Keywords: Colonic diseases ; Functional ; Quality of life ; Questionnaires
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Irritable Bowel Syndrome (IBS) is a chronic recurring disorder with variable illness episodes that may continue for many years. Diagnosis is based on symptoms such as abdominal pain and irregular bowel habits. These symptoms, plus the influence of psychological factors and extraintestinal symptoms, adversely affect the health-related quality of life (HRQoL) of individuals with IBS. This paper summarizes publications relating to the characteristics of IBS and associated HRQoL. Significantly lower scores on both the physical and mental health scales of the Short Form-36 are reported for individuals with IBS symptoms as compared with asymptomatic controls and US norms. IBS negatively affects general health, vitality, social functioning, bodily pain, diet, sexual function, sleep, and is associated with lost time from work. IBS-specific instruments that incorporate many of these domains have recently become available. HRQoL appears to correlate with IBS symptom severity and influences decisions to seek medical care. Psychosocial problems are also linked with IBS in relation to health care utilization. However, the full burden of this painful illness is still unknown since only 25–60% of individuals suffering from IBS symptoms see a physician for their illness.
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  • 47
    ISSN: 1573-2649
    Keywords: Factor analysis ; Germany ; New Zealand ; Oral health ; Poland ; Quality of life ; Reliability
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract A questionnaire designed to measure oral health-related quality of life (OHRQOL) in adults and children was assessed for its factorial structure and reliability using data from the Second International Collaborative Study on Oral Health Outcomes in New Zealand, Poland and Germany. Principal component analysis with orthogonal and oblique rotation was applied. The three-factor structure hypothesized for the children's questionnaire (self-reported oral disease symptoms, perceived oral well-being, social and physical functioning) was confirmed in New Zealand and Poland, and two self-reported oral disease symptom dimensions emerged in Germany. Five factors instead of the three hypothesized were identified for adults: two dimensions of symptoms were identified, and social and physical functioning appeared to be independent dimensions of OHRQOL. Similarity between the factors was demonstrated in all three countries. The reliability of the questionnaire ranged from moderate to excellent depending on the dimension and the country. These findings provide preliminary evidence of the cross-cultural stability of the OHRQOL questionnaire in New Zealand, Poland and Germany, for both children and adults. Further investigations by the present authors of the properties of the instrument in other samples will focus on demonstrating the stability and replicability of the factor structure identified here.
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  • 48
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    Quality of life research 9 (2000), S. 509-520 
    ISSN: 1573-2649
    Keywords: Arthritis impact measurement scales ; Elderly ; Patient generated index ; Quality of life ; Validity
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The purpose of this study was to determine the validity of the recently modified patient generated index (PGI) when used as a self-completed postal questionnaire by older people with arthritis. Two postal surveys were used, followed by interviews with a theoretically chosen sub-sample of respondents to both. Data from the self-completed modified PGI and the arthritis impact measurement scales (AIMS) and the interviews were assessed against 10 pre-defined validity criteria. A total number of 1027 people over 65 years old and with arthritis were surveyed and 53 were selected for interview. The response rates to the two-part survey were 78 and 83%. Complete data for the validity analysis were available from 47% of the respondents. The modified PGI met four and failed to meet six validity criteria. Pre-defined correlations were found with the AIMS and differentiation was possible between respondents with mild, moderate and severe arthritis and between those who had recently sought medical attention and those who had not. The areas that had been chosen for inclusion in the modified PGI were affected by arthritis but may not have been the ‘most important’ areas. The measurement method could not detect changes in health nor differentiate between respondents taking and not taking analgesics. There were several problems in the respondents' interpretation of the instructions, which were only revealed during the interviews. These data should help inform further modification of the PGI.
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  • 49
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    Quality of life research 9 (2000), S. 667-674 
    ISSN: 1573-2649
    Keywords: Eating disorders ; Quality of life ; Patient outcomes
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Objective: This study investigated the perception of health-related quality of life (HRQoL) in ambulatory patients with eating disorders in relation to the severity of eating symptomatology and psychological comorbidity. Methods: One hundred ninety-seven study patients were consecutively recruited at the Eating Disorders Outpatient Clinic. Short Form-36 items (SF-36), a generic HRQoL questionnaire, the Eating Attitudes Test (EAT-40), and the Hospital Anxiety and Depression Scale (HAD) were used to measure different aspects of HRQoL. The results of the SF-36 were compared with the norms of the Spanish general population for women 18–34 years of age. Results: Patients with eating disorders were more dysfunctional in all areas of the SF-36 compared with women in the general population. There were no differences among the eating disorder diagnostic groups. Higher scores on the EAT-40 and the HAD were associated with a perception of greater impairment on all SF-36 subscales. Conclusion: The evaluation of HRQoL in these patients confirms the impact of these disorders on daily life in areas not directly related to eating disorders. The SF-36 is useful for discriminating among different levels of severity of eating disorders and other psychological comorbidities of these patients.
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  • 50
    ISSN: 1573-2649
    Keywords: Asthma ; Child report ; Parent report ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract This study compares the reproducibility, construct validity and responsiveness of self-report and parent-report quality of life questionnaires How Are You (HAY) for 8–12-year-old children with asthma. A total of 228 Dutch children with asthma and their parents completed the HAY and daily recorded the child's asthma symptoms in a diary. Additionally 296 age- and -gender matched healthy children and their parents completed the generic part of the HAY. Reproducibility and responsiveness were examined in a sub-group of 80 children with asthma. In this group, three measurements were carried out, at baseline, after one week and once during the following 6 month when the clinical asthma status had changed. The within-subject standard deviations (SD) of three dimensions (physical activities, social activities, self-management) differed significantly (p 〈 0.05) in favour of the parent-version, indicating that the reproducibility of the parent version was better than that of the child version. The mean score-differences between children with asthma and healthy children as reported by parents did not significantly differ from those reported by children, except for cognitive activities (e.g. be able to concentrate on school work). The mean differences with regard to children with a different actual asthma status (symptom analysis), as reported by both informants, did not differ. Compared to the child-version, the parent-version showed greater ability to detect changes in children's quality of life over time for all but one dimension, indicating better responsiveness. The results indicate that in discriminative studies child and parents reports can be substituted on a group-level. In longitudinal studies data have to be obtained from parents. Consequently, caregivers collecting quality of life data for longitudinal purposes in daily practice should collect these data simply from parents.
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  • 51
    ISSN: 1573-2649
    Keywords: Ambulatory care ; Cancer pain ; Psychological assessment ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Because cancer pain can in many cases be intermittent, the presence or absence of pain in ambulatory care patients on any given clinic visit may not be an accurate characterization of the impact of pain on functioning or health-related quality of life (HRQOL). The purpose of this study was to describe the relationship between temporal aspects of pain presentation and HRQOL among 187 stage III/IV cancer patients using the Brief Pain Inventory and the EORTC QLQ-C30. A total of 43% of patients reported pain the previous week, with 22% reporting no pain at the time of assessment. Differences between three pain groups (No Pain, Past Pain, and Current Pain) were significant for global HRQOL and five dimensions of HRQOL. Severity of pain was also associated with each dimension of HRQOL. This study highlights the complex relationship between pain presentation and HRQOL. The findings support the continuing need for detailed pain assessments among cancer patients treated in ambulatory care settings. Specifically, standardized, self-report measures of cancer pain that include ‘frequency’ as well as severity may be the most accurate approach to capture the impact of pain on HRQOL.
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  • 52
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    Quality of life research 9 (2000), S. 847-854 
    ISSN: 1573-2649
    Keywords: Fatigue ; Neoplasms ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Fatigue is one of the most common and debilitating symptoms experienced by cancer patients, yet until recent years it has received little systematic attention, due in part to the lack of adequate instruments to measure fatigue. The primary aim of this report is to further validate a recently developed measure of fatigue for use with cancer patients: the Fatigue Symptom Inventory (FSI). This 13-item self-report measure was designed to measure the intensity and duration of fatigue and its interference with quality of life. The FSI was originally validated in a sample of breast cancer patients and a sample of healthy individuals. In this study, the FSI was evaluated in an outpatient sample that included male and female cancer patients, as well as some older patients, with a variety of cancer diagnoses. A seven-item interference scale was found to have good internal consistency, with α coefficients above 0.90. Convergent validity was demonstrated via comparisons with an existing measure of fatigue. Construct validity was demonstrated via comparisons with measure of life satisfaction and depression as well as comparisons among subgroups of patients expected to differ in their experience of fatigue. Overall, the FSI was further established as a valid and reliable measure of fatigue in cancer patients. The potential application of this measure in psychosocial oncology research is discussed.
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  • 53
    ISSN: 1573-2649
    Keywords: Asthma ; Quality of life ; Questionnaire ; Satisfaction ; Validation
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The Patient Satisfaction with Asthma Medication (PSAM) questionnaire was developed because no treatment satisfaction questionnaire could be identified that was comprehensive yet brief enough for use in clinical trials. Adult moderate asthmatics residing in Canada using an inhaled medication (either salmeterol, formoterol, or albuterol) self-administered the questionnaire, which also included the Asthma Quality of Life Questionnaire (AQLQ). A total of 53 asthmatics (70% female, 45% married, mean age: 47 years) completed the questionnaire. Using variable clustering, four PSAM scales were identified: Inhaler Properties, Comparison with Other Medications, Overall Perception of Medication, and Relief. Internal-consistency reliability provided evidence of reliability and lack of redundancy (Cronbach's Alpha: 0.82–0.88). Test-retest reliability was acceptable (ICC values at or near 0.70). As expected, interscale PSAM correlations were moderate to high; correlations between the PSAM and the AQLQ were low to moderate. To assess known groups validity, respondents were categorized by self-reported degree of asthma control: ‘very well controlled’ ‘somewhat controlled’, and ‘not well controlled’. Significant between-groups differences were found on all PSAM scales except Inhaler Properties. Patients categorized as ‘very well controlled’ tended to report highest PSAM scale scores. The PSAM questionnaire demonstrated reliability and validity in moderate asthmatics. Responsiveness should be assessed in future, prospective studies.
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  • 54
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    Quality of life research 9 (2000), S. 1041-1052 
    ISSN: 1573-2649
    Keywords: Cancer ; Proxy ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The objective of the study was to determine possible differences in perception of quality of life (QoL) between patients with metastatic breast or prostate cancer, their partners, and the treating physician. Patients with metastatic breast cancer (n = 71), and metastatic prostate cancer (n = 29), a partner, and the physician each completed the same QoL questionnaire indicating how they perceived the patient's QoL. The European organization for research and treatment of cancer (EORTC) QLQ-C30 questionnaire was used to assess patients with breast cancer and the modified prostate cancer specific quality of life instrument (PROSQOLI) for patients with prostate cancer. There was reasonable agreement in mean scores between patients, and physicians or partners, for many domains of QoL; however, there was substantial discordance between scores when considering individual patients. For patients with metastatic breast cancer, physicians systematically underestimated overall QoL (p = 0.0002), social functioning (p = 0.001), and role functioning (p = 0.008), while partners showed better agreement. With prostate cancer physicians tended to underestimate pain, while mean scores for spouses were more concordant. There is substantial variability between ratings of QoL by physicians or partners, as compared to patient ratings. Medical decisions should be based on information about QoL provided by patients using validated methods.
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  • 55
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    Quality of life research 9 (2000), S. 1005-1013 
    ISSN: 1573-2649
    Keywords: Elderly patient ; Primary carer ; Quality of life ; Quality of planning for discharge
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Discharge planning endeavours to assist the transition of patients from the acute hospital setting into the community. We examined the quality of discharge planning from the perspective of the carer. Spouses were the most common carers for the elderly patients in our study. Many carers were also elderly, with their own health problems. Using a new instrument (entitled PREPARED) (K. Grimmer and J. Moss, Int J Qual Health Care (in press)), carers rated the quality of planning for discharge much lower than did the patient, indicating that their needs were often not met when discharge was being planned. In free text responses, carers expressed their dissatisfaction over communication about how the family would cope once the patient went home. Carers generally had lower summary mental quality of life scores than the Australian norms (as measured by the SF-36 health survey (J. Ware and R. Sherbourne, Med Care 1992; 30: 473–483)), suggesting that the caring role may have impacted upon their emotional wellbeing. The rate of use of community services in the first week post-discharge was low, suggesting that carers and patients carried the majority of the burden immediately after discharge. We suggest that planning for hospital discharge requires more consideration of the carer.
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  • 56
    ISSN: 1573-2649
    Keywords: Dialysis ; End-stage renal disease ; Quality of life ; SF-36
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Objective: To evaluate the construct validity of the Medical Outcomes Study Questionnaire 36-Item Short Form Health Survey (SF-36) and to assess the quality of life of patients with end-stage renal disease (ESRD) at the initiation of maintenance dialysis treatment. Methods: Cross-sectional study. Setting: Eight ambulatory dialysis units in São Paulo city, Brazil. Study participants: Eighty ESRD patients at the initiation of chronic dialysis program and consecutively accepted for treatment in selected units in 1998. Main outcome measures: Quality of life as measured by the dimensions of the SF-36 questionnaire. The `Kidney Disease Questionnaire' was used in a subgroup of patients to evaluate the validity of the SF-36. Results: Median (range) scores of the SF-36 dimensions (ranging from 0 to 100, higher scores representing better quality of life) were: Physical Function 70 (0–100), Role Limitations due to Physical Problems 25 (0–100), Bodily Pain 62 (0–100), General Health 57 (5–100), Vitality 55 (10–100), Social Function 63 (0–100), Role Limitations due to Emotional Problems 34 (0–100) and Mental Health 68 (0–100). SF-36 dimensions correlated significantly with those of the `Kidney Disease Questionnaire' (correlation coefficients ranging from 0.23 to 0.68). Conclusions: The SF-36 was shown to have construct validity when used in patients with ESRD in Brazil. The quality of life of ESRD patients is impaired at the initiation of dialysis treatment and this was clearly evidenced in the Role Limitations due to Physical Function and Emotional Function items. Greater attention should be given to interventions that could improve the quality of life parameters at the initiation of dialysis treatment.
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  • 57
    ISSN: 1573-2649
    Keywords: Cancer ; Co-operative group ; Health economics ; Randomized controlled clinical trials ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Background: Co-operative groups have played an important role in the advance of health-related quality of life (HRQL) research. However, definitions of the concept, criteria for selection of existing instruments and methods for data collection and interpretation remain poorly defined in the literature. A survey was conducted amongst the major cancer co-operative groups in order to gain a better understanding of their current policy and processes to ensure optimal HRQL data collection within cancer clinical trials. The topic of health economics was similarly addressed. Methods: A written questionnaire was addressed to 16 major European and North American cancer co-operative groups. Eleven groups responded (response rate: 69%), however, one group could not provide information for the survey, thus ten questionnaires were available for analysis. Results: The results from this survey among co-operative groups show that HRQL (more than health economics) is recognized as an important, although usually secondary, outcome measure in oncology trials. On the whole, co-operative groups have a rather flexible policy towards the inclusion of HRQL (and HE) into their clinical trials, and practice is very much on a case-by-case basis, but use standard practice guidelines and internal procedures is to ensure well-defined study protocols and enhance good quality studies.
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  • 58
    ISSN: 1573-2649
    Keywords: Breast cancer ; EORTC QLQ-BR23 ; Iran ; Quality of life ; Validation study
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The objective of this study was to test the reliability and validity of the Iranian version of the European Organization for Research and Treatment of Cancer (EORTC) Breast Cancer-Specific Quality of Life Questionnaire (QLQ-BR23). The English-language version of the questionnaire was translated into Persian (Iranian language) and its final form was approved by the EORTC Study Group on Quality of Life and then it was used in this study. The questionnaire was administered at two points in time to a consecutive sample of 168 newly diagnosed breast cancer patients and almost all of them (99%) found the questions easy to understand and acceptable. Cronbach's α coefficient for multi-item scales (to test reliability) ranged from 0.63 to 0.95 at baseline and from 0.75 to 0.92 at follow-up administration of the questionnaire. Validity analysis was performed using known-groups' comparison analysis. The results showed that all functional and symptom scales discriminated between sub-groups of patients differing in clinical status as defined by their performance status and disease stage. In addition, all functional and symptoms scales detected change over time, as a function of changes in patients' performance status. In general, the findings of this study indicated that the Iranian version of the EORTC QLQ-BR23 is a reliable and valid supplementary measure of the quality of life in breast cancer patients and can be used in clinical trials and studies of outcome research in oncology.
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  • 59
    ISSN: 1573-2649
    Keywords: Accommodation processes ; Quality of life ; Satisfaction ; Schizophrenia ; Social comparison
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract In schizophrenic patients, quality of life (QoL) studies often find high levels of general life satisfaction and satisfaction in various life domains despite deprived living conditions. Therefore, the usefulness of QoL as an outcome indicator has been questioned. Since social comparison processes have been postulated to be related to the level of satisfaction, this hypothesis was analysed empirically by the present study in schizophrenic patients. Satisfaction and social comparisons of 148 schizophrenic inpatients and 66 mentally healthy controls were examined with regard to the domains ‘health’ and ‘family’ by means of a standardised interview. The schizophrenic patients had a history of either long-term (n = 75) or short-term (n = 73) restricted and deprived living conditions. Long-term patients showed significantly higher satisfaction levels than short-term patients. They compared themselves predominantly laterally or downwards with fellow inpatients. Significant relationships between the direction of social comparisons and satisfaction ratings were found in all three samples. Social comparisons proved to be important for the level of satisfaction in schizophrenic patients. Results indicate that experiences of restricted and deprived living conditions induce accommodation processes and response-shifts that should be taken into account in the interpretation of quality-of-life data.
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  • 60
    ISSN: 1573-2649
    Keywords: Chronic bronchitis ; EuroQoL (EQ-5D) ; Health outcomes ; Medical outcomes study 6-item general health survey (MOS-6A) ; Measure yourself medical out come profile (MYMOP) ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract There is little published information on the measurement of health status or quality of life in acute exacerbations of chronic bronchitis. The measure yourself medical outcome profile (MYMOP), the medical outcomes study 6-item general health survey (MOS-6A), and EuroQoL (EQ-5D) were evaluated in 81 patients with acute exacerbations of Type-1 chronic bronchitis presenting at a single general practice centre in Glasgow. The questionnaires were administered at the first clinic visit and at a second visit within 1 week of treatment completion. Item scores for MYMOP were generally more responsive than those for the other instruments, as assessed by standardised response means and an index of responsiveness for those patients reporting minimal change between visits. Construct validity was demonstrated for the MYMOP by the gradient in score change with the patient's perceived change in clinical condition and by the relationship between score change and the physician's assessment of clinical outcome. This study demonstrated that the MYMOP is a valid and potentially useful instrument for the assessment of patient outcomes in acute exacerbations of chronic bronchitis and is more responsive than the MOS-6A or EQ-5D in this setting. The choice of instrument will vary according to the objective of the study.
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  • 61
    ISSN: 1573-2649
    Keywords: Children ; Population sample ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract This study aimed to assess the quality of life of a population sample of schoolchildren. The Generic Children's Quality of Life Measure (GCQ) has been developed to allow comparison between chronically ill children and the general child population. The measure assesses how the child views his or her life and also how they would like it to be. Quality of life is measured as the discrepancy between the two viewpoints. This large community-based survey aimed to establish GCQ norm values for children aged 6–14 years. The children were from a sample of schools stratified by geographical location and social need: rural affluent, rural low affluence, urban affluent and urban low affluence. 720 completed questionnaires were analysed. The scores were normally distributed with a wide range. The GCQ showed an acceptable reliability with a Cronbach's α of 0.75. The quality of life score was not correlated with age (r = −0.02, p = 0.64) nor with the deprivation score of the area in which the children lived (r = −0.026, p = 0.49). There were no significant differences between the scores by gender (p = 0.22) nor by rural/urban location (p = 0.60). Normative values were established. The GCQ is suitable for using with children over a large age range (6–14 years) without the scores being confounded by the age, gender, affluence or geographical location.
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  • 62
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    Quality of life research 9 (2000), S. 579-586 
    ISSN: 1573-2649
    Keywords: Bipolar disorder ; Health status ; Mental health ; Outcome assessment (health care) ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Background: Despite a growing number of studies of patients' health values (utilities), little is known about health values of patients with mental illness, particularly bipolar (manic-depressive) disorder. Methods: We administered a computerized rating scale, time tradeoff, and standard gamble to 53 patients. Patients were asked to rate or value their current state of health overall and then their current mental health. In addition, we administered the SF-36; Inventory of Depressive Symptoms (IDS-C); Positive and Negative Syndrome Scale (PANSS); Young Mania Rating Scale (YMRS); and Global Assessment of Functioning Scale. Results: The patients' median (25th, 75th percentile) age was 43 (37, 50); 62% were female. Mean (±SD) health ratings for current overall health were 68.0 (±20.3) vs. 61.0 (±25.7) for current mental health (p-value for difference = 0.02). On the time tradeoff, scores for current overall health averaged 0.71 (±0.37) vs. 0.61 (±0.39) for current mental health (p = 0.02); on the standard gamble, mean scores were 0.77 (±0.32) for current overall health vs. 0.70 (±0.35) for current mental health (p = 0.11). In univariate analyses, rating scale, time-tradeoff, and standard gamble scores for both current overall health and for current mental health were correlated with the SF-36 and all psychiatric scales (|r| = 0.22–0.76) except the YMRS (|r| ≤ 0.13). In multivariable analyses, health values for current overall health were related to factors different from those that were related to health values for current mental health (R 2 = 0.38–0.65), and none of the health value measures was related to the YMRS. Conclusion: Health values of patients with bipolar disorder are higher for their current health overall than for their current state of mental health. Health values are related to certain health status attributes and to level of depression but perhaps not to level of mania.
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  • 63
    ISSN: 1573-2649
    Keywords: Asthma ; Chronic obstructive pulmonary disease ; Epilepsy ; Health-related quality of life ; Health status ; Ischemic coronary disease ; Quality of life ; Rheumatoid arthritis
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The objective of this study was to compare the health-related quality of life (HRQL) of patients with epilepsy with populations suffering from different chronic diseases, using the short form 36 (SF-36) health profile measure. The populations to be compared were adult patients drawn from hospital based registers, with confirmed epilepsy (n = 397), angina pectoris (n = 785), rheumatoid arthritis (n = 1030), asthma (n = 117) and chronic obstructive pulmonary disease (COPD) (n = 221). Health-related quality of life scores were compared using analysis of covariance (ANCOVA) for predicting mean scores adjusted for age, gender, education and comorbidity. Patients with epilepsy on average scored highest on all scales, reflecting that in our sample the majority had well-controlled epilepsy. Our results indicate that the HRQL of a representative sample of patients with epilepsy is good, when compared with other chronic disorders, although reduced in several dimensions compared with a general reference population. Patients with rheumatoid arthritis (RA) and COPD scored lowest on the physical function scales, while rheumatoid arthritis patients reported most pain.
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  • 64
    ISSN: 1573-2649
    Keywords: Age ; Early stage breast cancer (ESBC) ; Quality of life ; Sociodemographic profile
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract This paper reports the quality of life (QoL) of a large cohort of Australian women three and twelve months after surgery for early stage breast cancer (ESBC), and shows that the impact of disease and treatment on QoL differed by age, education and marital status. Eighty-three percent of eligible patients were recruited; 86% had breast conserving surgery and 14% mastectomy. Response rates were 93% (n = 305) at three months and 88% (n = 291) at one year. Quality of life was measured with the EORTC core questionnaire (QLQ-C30) and an ESBC-specific questionnaire. Multilevel analysis was used to estimate the effects and interactions of time, treatment and patient characteristics. Most symptoms declined between three months and one year, but arm and menopausal symptoms persisted. Emotional, social and role functioning improved over time, and fear of disease recurrence diminished. Younger women faired worse than older women on a broad range of QoL dimensions. Single women and those with less education faired worse on a number of dimensions. The negative impact of mastectomy on body image was greatest among married women, particularly young married women. These sociodemographic distinctions are relevant when discussing treatment options with women facing a diagnosis of ESBC.
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  • 65
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    Quality of life research 9 (2000), S. 811-817 
    ISSN: 1573-2649
    Keywords: Cost-benefit analysis ; Decision making-computer assisted ; Preferences ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Objective: The purpose of this study was to assess the reliability and internal consistency of measurements of utilities performed with a computer program (iMPACT2) designed for Internet surveys and Internet patient decision-support systems. Methods: We implemented the Internet Multimedia Preference Assessor Construction Tool, version 2 (iMPACT2) program using the combination of a web server, HTML files, and a web-accessible database. The program randomized subjects, screened their responses for missing data and failures of internal consistency, assisted patients with resolving certain inconsistencies, and, upon a subject's completion of the protocol, provided a report of results to the research assistant administering the program. To validate the iMPACT2 program, we recruited 60 healthy community volunteers and elicited preferences in a research-lab setting using a visual analog scale (VAS) and the standard gamble (SG) for subject's current health and three hypothetical states. For purposes of comparison, we also administered a Short Form-12 (SF-12) health-assessment questionnaire. Subjects used the computer software on two occasions separated by 2–4 weeks of time. Results: Visual analog scale and standard gamble ratings for subjects' current health were reliable (intraclass correlation coefficient (ICC) of 0.82 and 0.84 (two outliers excluded − 0.60 without exclusions), respectively) were comparable with the reliability of the Physical and Mental Component scales of the SF-12 (ICCs of 0.84 and 0.75, respectively). Subjects could easily discriminate between hypothetical states (D scores 0.74 for SG and 0.90 for VAS), and 94% had a completely internally consistent ordering of preference ratings for states. Conclusions: iMPACT2 produces measurements of standard gamble utilities that are reliable and have a high degree of internal consistency. Procedures for assessment of utilities developed for desktop computer programs can be translated to software designed for the Internet, facilitating the use of utilities and endpoints in clinical trials and development of web-based decision-support applications for patients. However, further testing, including direct comparisons with traditional interviewer administered utility elicitation protocols, is needed.
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  • 66
    ISSN: 1573-2649
    Keywords: Antiretroviral therapy ; Canada ; HIV/AIDS ; Protease inhibitors ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Objective: This study was conducted to determine the effect of the use of HIV protease inhibitors on the quality of life among persons infected with HIV. Methods: Subjects were participants in the British Columbia Centre for Excellence in HIV/AIDS Drug Treatment Program who had completed two annual participant surveys, one prior to initiating therapy with a protease inhibitor and one after. Quality of life was measured using the Medical Outcomes Study Short Form Health Survey (MOS-SF). Statistical analyses were conducted using parametric and multivariate methods. Results: Our analysis was based on 179 HIV-positive individuals. Compared to quality of life at baseline, we found no statistically significant changes in the health perception, pain, physical, role and social functioning MOS-SF subscale scores at follow-up. The measure of mental health was the only component to decline significantly over time. Sub-analyses found significant increases in the measures of health perception (p = 0.004), physical (p = 0.037), role (p 〈 0.001) and social functioning (p = 0.053) for individuals with a low baseline quality of life. For those with a higher quality of life before starting a protease inhibitor containing regimen we observed a significant decline in the subscales of mental health (p = 0.001), physical (p = 0.007), role (p = 0.021) and social functioning (p = 0.003) over the study period. Conclusions: Our findings indicate that despite strict dosage requirements and adverse side effects associated with protease inhibitor use patients are on the whole maintaining their quality of life after starting on a protease inhibitor containing regimen. Continued follow-up of this cohort will be required to determine the long term implications of these observations.
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  • 67
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    Quality of life research 9 (2000), S. 763-766 
    ISSN: 1573-2649
    Keywords: Osteoporosis ; Qualeffo ; Quality of life ; Vertebral fractures
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Vertebral fractures cause pain and may hamper activities of daily life, mobility, social activities and mental function. These aspects of quality of life may be assessed with a generic or disease-specific quality of life questionnaire. The International Osteoporosis Foundation has developed a specific questionnaire for patients with vertebral fractures. This questionnaire Qualeffo-41, contains 41 questions in the domains pain, physical function, social function, general health perception and mental function. The questionnaire has been translated into many languages. A multicenter validation study showed good repeatability, adequate internal consistency and good discrimination between patients with vertebral fractures and control subjects. Further clinical testing of Qualeffo-41 showed that the domain and total scores increased linearly with the number of prevalent vertebral fractures. Lumbar fractures had more impact on quality of life than thoracic fractures. The impact of vertebral fractures on quality of life increased with age. The results with Qualeffo-41 confirm the decreased quality of life in patients with vertebral fractures.
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  • 68
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    Diseases of the colon & rectum 43 (2000), S. 1497-1502 
    ISSN: 1530-0358
    Keywords: Ulcerative colitis ; Quality of life ; Pelvic pouch ; Dysplasia ; Cancer ; Colitis-associated neoplasia
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract PURPOSE: Despite high patient satisfaction with a pelvic pouch, patients experience some bowel dysfunction. Patients whose indication for surgery is neoplasia may have near-normal preoperative bowel function. We hypothesized that these patients would be less accepting of a poorer functional status after surgery, reflected in a poorer measure of quality of life. METHOD: Sixteen patients who had dysplasia or cancer as the primary indication for surgery were compared with a matched control group whose indication for surgery was failed medical therapy. Quality of life was assessed using one disease-specific instrument, the Inflammatory Bowel Disease Questionnaire, two generic quality-of-life instruments, the Sickness Impact Profile and the Short Form 36, and two utility assessments. RESULTS: The groups were well matched with no significant differences in functional outcome. Quality-of-life scores were high in both groups and there were no significant differences in overall quality of life between the two groups using all five instruments. There was evidence of a response shift phenomenon in the failed medical therapy control group. CONCLUSION: Quality of life of patients who have a pelvic pouch for colitis-associated neoplasia is excellent and the same as that of patients who have a pouch for failure of medical therapy.
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  • 69
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    Diseases of the colon & rectum 43 (2000), S. 326-332 
    ISSN: 1530-0358
    Keywords: Laparoscopic surgery ; Aged ; Colorectal surgery ; Morbidity ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract PURPOSE: The aim of this study was to determine rates of complications and extent of benefits for laparoscopic-assisted colectomy compared with open colectomy in patients older than age 75. METHODS: Forty-two patients undergoing laparoscopic-assisted colectomy (1992–1998) were matched to 42 open colectomy patients for gender, age, year of surgery, operating surgeon, and procedure. Health status (American Society of Anesthesiology score), previous abdominal surgery, conversion rate, surgical outcome, and need for assistance at admission and dismissal (independencevs. home with assistancevs. nursing facilities) were reviewed. RESULTS: Mean ages were 81.2 and 80.5 years for laparoscopic-assisted colectomy and open colectomy, respectively (P=not significant). Twenty-one laparoscopic-assisted colectomy and 23 open colectomy patients were females. American Society of Anesthesiology scores were comparable, as were rates of previous abdominal surgery (57 percent for laparoscopic-assisted colectomyvs. 62 percent for open colectomy;P=not significant). Mean operative times were longer for laparoscopic-assisted colectomy (190 minutes for laparoscopic-assisted colectomyvs. 142 minutes for open colectomy;P〈0.001); operating room times progressively decreased from 221 minutes in 1992 to 1995 to 147 in 1998 for laparoscopic right hemicolectomy (P〈0.001). The conversion rate for laparoscopic-assisted colectomy was 14.3 percent. There were no deaths in either group, and laparoscopic-assisted colectomy was associated with fewer morbidities (14.3 percent for laparoscopic-assisted colectomyvs. 33.3 percent for open colectomy;P=0.04), narcotic usage (2.7vs. 4.8 days;P〈0.001), time to return to bowel movements (3.9vs. 5.9 days;P〈0.001), and length of hospital stay (6.5vs. 10.2 days;P〈0.001). Independent status at admission in 37 laparoscopic-assisted colectomy and 38 open colectomy patients was maintained at discharge by 35 laparoscopic-assisted colectomyvs. 29 open colectomy patients (P=0.025). CONCLUSIONS: Laparoscopic-assisted colectomy is safe and beneficial, including preservation of postoperative independence, to the elderly when compared with open colectomy.
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  • 70
    ISSN: 1530-0358
    Keywords: Rectal cancer ; Sphincter preservation ; Functional outcome ; Quality of life ; Intraoperative radiation therapy
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract PURPOSE: Locally advanced primary and recurrent rectal cancers treated with external beam radiation therapy, intraoperative radiation therapy, and chemotherapy represent a complex group of patients in the setting of extensive pelvic surgery and sphincter preservation. We sought to define functional outcome and quality of life in this subset of patients. METHODS: We retrospectively reviewed our experience with locally advanced primary and recurrent rectal cancer patients who underwent intraoperative radiation therapy with either low anterior resection (n=12) or coloanal anastomosis (n=6) between 1991 and 1998. Current functional outcome and quality of life were evaluated by a detailed questionnaire. RESULTS: Median time from operation to assessment was 24 (range, 6–93) months. Using a standardized Sphincter Function Scale, incorporating the number of bowel movements per day and degree of incontinence, patients were graded as poor, fair, good, or excellent function. Of all patients, 56 percent reported unfavorable (poor or fair) function. Of the subset of patients with coloanal anastomosis or very low low anterior resection, 88 percent had unfavorable function as compared with 30 percent with standard low anterior resection. (P=0.02; Fisher's exact probability test). A quality-of-life satisfaction score based on social, professional, and recreational restrictions demonstrated 56 percent of patients to be dissatisfied with their bowel function. CONCLUSIONS: The majority of patients with advanced rectal cancers who require external beam radiation therapy, extensive pelvic surgery, and intraoperative radiation therapy report unfavorable functional and quality-of-life outcomes after sphincter preservation. In this setting patients being considered for coloanal anastomosis or very low anterior resection may be better served by permanent diversion.
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  • 71
    ISSN: 1534-4681
    Keywords: Breast cancer ; Quality of life ; Mental health ; Surgery
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Background: The aim of the present study was to examine whether type of surgery, age, and time since surgery influenced psychological distress and quality of life (QOL) in women treated for breast cancer. Methods: We surveyed 183 women who had undergone surgery for breast cancer. Psychological distress was measured with the Mental Health Inventory and QOL was measured with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire. Results: After controlling for stage of disease, radiation treatment, and age, there was a statistically significant interaction between type of surgery and time since surgery for the Mental Health Inventory total score, and a marginal interaction between type of surgery and time since surgery for the Global health status/QOL score. Women who had breast conservation surgery experienced significantly greater levels of psychological distress and marginally worse QOL from 40 months after surgery onward than did women who received a mastectomy. Conclusions: The effects of different surgical treatments for breast cancer on psychological distress and QOL become apparent only after a period of several years. Women, therefore, need counseling on the potentially positive and negative psychological implications of different surgical treatments for breast cancer.
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  • 72
    ISSN: 1534-4681
    Keywords: Quality of life ; Cystectomy ; Urinary diversion
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Background: In this study, we used a previously well-validated survey to assess the impact of different forms of urinary diversion on overall quality of life in patients with bladder cancer. Methods: A total of 92 patients, having three different forms of urinary diversion after radical cystectomy, completed by mail the SF-36, a validated quality-of-life survey. All patients had local(regional disease at the time of cystectomy and are currently without evidence of disease. Completed surveys were then analyzed into physical (PCS) and mental (MCS) component quality-of-life scores per published protocols. Results were then compared with published age-based norms. Results: A total of 38 men who had cystectomy and ileal neobladder had a mean PCS (6SD) of 48.4 (7.8) and a mean MCS of 51.0 (7.4); 16 men and women who had cystectomy and Indiana Pouch had a mean PCS of 48.4 (8.9) and a mean MCS of 55.7 (3.8). None of these results is statistically different from published age- and sex-based population norms. Thirty-eight men who had cystectomy and ileal conduit had a mean PCS of 41.4 (8.5) and a mean MCS of 48.2 (10.7). The PCS is not statistically different from the population-based norm; however, the MCS is significantly decreased from the published norm (P 5.01). Conclusions: Patients with ileal conduits have significantly decreased mental health quality of life whereas patients with continent urinary diversions do not. Therefore, when not medically contraindicated, patients should be offered a continent diversion as the diversion of choice after cystectomy.
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  • 73
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    Diseases of the colon & rectum 43 (2000), S. 1206-1212 
    ISSN: 1530-0358
    Keywords: Fistula-in-ano ; Recurrence ; Incontinence ; Quality of life ; Lifestyle ; Satisfaction
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract PURPOSE: The surgical treatment of fistula-in-ano frequently results in recurrence of the fistula or postoperative anal incontinence. Despite these problems, most patients are satisfied with the results of their surgery. To clarify this apparent discrepancy, we attempted to identify factors that affect patient's lifestyles and may contribute to their satisfaction. METHODS: A questionnaire was mailed to 624 patients surgically treated for cryptoglandular fistula-in-ano at the University of Minnesota during a five-year period. Three hundred seventy-five patients returned their questionnaires. Patients who were followed up for a minimum of one year were included in this retrospective study. Associations between postoperative complications and patient satisfaction were identified by chi-squared tests and multiple logistic regression. Attributable fractions for patient dissatisfaction were calculated using study population dissatisfaction rates. RESULTS: Patient satisfaction was strongly associated with fistula recurrence, difficulty holding gas, soiling of undergarment, and accidental bowel movements. Effects of incontinence on patient quality of life were also significantly associated with patient satisfaction as was the number of lifestyle activities affected by incontinence. Patients with fistula recurrence reported a higher dissatisfaction rate (61 percent) than did patients with anal incontinence (24 percent), but the attributable fraction of dissatisfaction for incontinence (84 percent) was greater than that for fistula recurrence (33 percent). Patient satisfaction was not significantly associated with age, gender, history of previous fistula surgery, type of fistula, surgical procedure, time since surgery, or operating surgeon. CONCLUSION: Patient satisfaction after surgical treatment for fistula-in-ano is associated with recurrence of the fistula, the development of anal incontinence, and with the effects of anal incontinence on patient lifestyle. In our series of patients treated mainly with laying open of the fistula tract, patients with fistula recurrence had a higher dissatisfaction rate than did patients with anal incontinence. However, because anal incontinence was more prevalent than fistula recurrence, a higher fraction of dissatisfaction was attributable to anal incontinence.
    Type of Medium: Electronic Resource
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  • 74
    Electronic Resource
    Electronic Resource
    Springer
    Pharmacy world & science 22 (2000), S. 31-32 
    ISSN: 1573-739X
    Keywords: Diuretics ; Drug therapy ; Elderly ; Evidence‐based ; Hypertension ; Ischaemic heart disease ; Quality of life ; Stroke ; Systematic review
    Source: Springer Online Journal Archives 1860-2000
    Topics: Chemistry and Pharmacology
    Notes: Abstract Hypertension is very common, occurring in over 50% of older people, and is a major risk factor for stroke and ischaemic heart disease. Based on systematic reviews there is evidence to show that drug treatment of hypertension in older people saves lives and prevents unnecessary morbidity. There is also strong evidence to support the use of diuretics as first line agents. Quality of life does not appear to be reduced by antihypertensive drug therapy, although more high quality research is needed. Through the use of drug treatment older people with hypertension can continue to contribute to society and live active lives.
    Type of Medium: Electronic Resource
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  • 75
    ISSN: 1615-6722
    Keywords: Schlüsselwörter Koronare Herzerkrankung ; Perkutane transluminale Koronarangioplastie (PTCA) ; Angina pectoris ; Lebensqualität ; Anschlußheilbehandlung ; Key words Coronary artery disease ; Percutaneous transluminal coronary angioplasty (PTCA) ; angina pectoris ; Quality of life ; Rehabilitation
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Description / Table of Contents: Abstract Background: Quality control becomes increasingly important in interventional cardiology. Since in most health care systems, clinical treatment of patients who underwent percutaneous transluminal coronary angioplasty (PTCA) is left to general practitioners, important information on the clinical long-term outcome is lost for the cardiologic centers. Aim of this study was to evaluate the clinical status of these patients 4 years after treatment with a PTCA at our institution. Patients and Methods: Inclusion criterion was the treatment with a PTCA within July 1, 1989 to June 30, 1991 (549 Patients). A questionnaire was sent to all patients (45±7 months after PTCA). Four time-points were defined: before PTCA (T1), directly after PTCA (T2), 3 months after PTCA (T3) and actual status (T4). Results: Questionnaires of 500/549 (91,1%) patients could be analyzed. One-hundred and fifteen patients (23%) had to undergo reinterventions: 69 (13.8%) had a re-PTCA and 46 (9.2%) patients an operative revascularization. At T4, 11.2% patients still had disturbing angina. Within the study period 35 patients (7%) died. Two-hundred and nineteen patients attended a rehabilitation institution. At T4, the amount of patients with little angina was not different comparing patients with/without the attendance of a rehabilitation institution (60.7% vs 66.4% p = 0.29). The rate of new pensioners after PTCA (n = 114 [22.8%] was higher in the group of patients who attended a rehabilitation (68 patients [13.6%] with vs 48 patients [9.2%] without attendance, p = 0.0036). The attendance of a rehabilitation institution, however, had positive effects on changes of the life stile and eating habits. Conclusions: This retrospective inquiry was found to be a useful tool (response rate 91.1%) for quality control in interventional cardiology. Important information concerning the quality of the interventions (low reintervention rate) and the long-term outcome of our patients (low rate with severe angina at T4) could be aquired.
    Notes: Zusammenfassung Hintergrund: Die Qualitätskontrolle gewinnt in der interventionellen Kardiologie zunehmend an Bedeutung. Da aber die Nachbetreuung von Patienten, die mit einer perkutanen transluminalen Koronarangioplastie (PTCA) behandelt wurden, meist durch die jeweiligen Hausärzte durchgeführt wird, gehen dem kardiologischen Zentrum wichtige Informationen hinsichtlich des klinischen Langzeitverlaufs verloren. Ziel dieser retrospektiven Studie war daher, den klinischen Status dieser Patienten vier Jahre nach der Behandlung mit einer PTCA an unserer Institution zu untersuchen. Patienten und Methode: Einschlußkriterium war die Behandlung mit einer PTCA im Zeitraum vom 1.7.1989 bis 30.6.1991 (549 Patienten). Zur Erhebung der Langzeitergebnisse (45±7 Monate nach PTCA) wurde den Patienten ein Fragebogen zugesandt. Vier Erhebungszeitpunkte wurden definiert: vor PTCA (T1), direkt nach PTCA (T2), drei Monate nach PTCA (T3) und zum Erhebungszeitpunkt (T4). Ergebnisse: Fragebögen von 500/549 (91,1%) Patienten kamen zur Auswertung. 115 (23%) Patienten mußten sich einer Reintervention unterziehen (PTCA: 69 Patienten [13,8%], aortokoronare Venen-Bypass-(ACVB-)Operation: 46 Patienten [9,2%]). Zu T4 hatten 11,2% Patienten stärkere Angina-pectoris-Beschwerden. 35 Patienten (7%) waren im Erhebungszeitraum verstorben. 219 Patienten (52%) nahmen an einer Anschlußheilbehandlung teil. Zu T4 waren diese Patienten nicht häufiger beschwerdefrei als Patienten ohne Anschlußheilbehandlung (60,7% vs. 66,4%, p = 0,29). Der Anteil der nach Intervention neu berenteten Patienten (n = 114 [22,8%] war in der Gruppe mit Anschlußheilbehandlung höher (68 Patienten [13,6%] mit Anschlußheilbehandlung vs. 46 Patienten [9,2%] ohne Anschlußheilbehandlung, p = 0,0036). Positiven Einfluß hatte die Teilnahme an einer Anschlußheilbehandlung auf Änderungen des Lebensstils und der Eßgewohnheiten. Schlußfolgerung: Diese retrospektive Befragung erwies sich als sinnvoll (Antwortrate 91,1%), um Daten zur Qualitätskontrolle zu erheben. Wichtige Informationen sowohl hinsichtlich der Qualität der Koronarinterventionen (niedrige Reinterventionsrate) als auch hinsichtlich des klinischen Langzeitverlaufs (niedriger Anteil von Patienten mit schwerer Symptomatik nach vier Jahren) konnten hierdurch gewonnen werden.
    Type of Medium: Electronic Resource
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