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  • Articles: DFG German National Licenses  (152)
  • Electronic Resource  (152)
  • 2000-2004  (152)
  • 1870-1879
  • 1840-1849
  • Prognosis  (77)
  • Quality of life  (75)
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  • Articles: DFG German National Licenses  (152)
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  • Electronic Resource  (152)
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  • 101
    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.
    Type of Medium: Electronic Resource
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  • 102
    Electronic Resource
    Electronic Resource
    Springer
    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.
    Type of Medium: Electronic Resource
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  • 103
    Electronic Resource
    Electronic Resource
    Springer
    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.
    Type of Medium: Electronic Resource
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  • 104
    Electronic Resource
    Electronic Resource
    Springer
    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.
    Type of Medium: Electronic Resource
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  • 105
    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.
    Type of Medium: Electronic Resource
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  • 106
    Electronic Resource
    Electronic Resource
    Springer
    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.
    Type of Medium: Electronic Resource
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  • 107
    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.
    Type of Medium: Electronic Resource
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  • 108
    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.
    Type of Medium: Electronic Resource
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  • 109
    Electronic Resource
    Electronic Resource
    Springer
    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.
    Type of Medium: Electronic Resource
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  • 110
    Electronic Resource
    Electronic Resource
    Springer
    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.
    Type of Medium: Electronic Resource
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  • 111
    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.
    Type of Medium: Electronic Resource
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  • 112
    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.
    Type of Medium: Electronic Resource
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  • 113
    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.
    Type of Medium: Electronic Resource
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  • 114
    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.
    Type of Medium: Electronic Resource
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  • 115
    Electronic Resource
    Electronic Resource
    Springer
    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.
    Type of Medium: Electronic Resource
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  • 116
    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.
    Type of Medium: Electronic Resource
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  • 117
    Electronic Resource
    Electronic Resource
    Springer
    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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  • 118
    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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  • 119
    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.
    Type of Medium: Electronic Resource
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  • 120
    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.
    Type of Medium: Electronic Resource
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  • 121
    Electronic Resource
    Electronic Resource
    Springer
    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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  • 122
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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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  • 123
    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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  • 124
    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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  • 125
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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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  • 126
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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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  • 127
    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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  • 128
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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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  • 129
    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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  • 130
    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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  • 131
    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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  • 132
    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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  • 133
    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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  • 134
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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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  • 135
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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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  • 136
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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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  • 137
    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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  • 138
    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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  • 139
    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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  • 140
    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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  • 141
    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.
    Type of Medium: Electronic Resource
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  • 142
    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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  • 143
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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.
    Type of Medium: Electronic Resource
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  • 144
    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.
    Type of Medium: Electronic Resource
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  • 145
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    European archives of oto-rhino-laryngology and head & neck 257 (2000), S. 154-157 
    ISSN: 1434-4726
    Keywords: Key words Basaloid squamous cell carcinoma ; Laryngeal neoplasms ; Prognosis
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Basaloid squamous cell carcinoma (BSC) is regarded as a variant of squamous cell carcinoma, but displays distinct morphological and biological features as well as a different clinical course. The tumor is frequently seen in the head and neck and is preferentially located in the larynx, especially in supraglottic sites. Ten patients with BSC of the supraglottic larynx were treated from 1991 to 1995 at the Medical Faculty of the University of Istanbul. Results of treatment were compared retrospectively with a control group consisting of 44 patients with well-differentiated squamous cell carcinomas. Ages, ¶localizations, stages and treatment procedures were similar. In both groups mean survival, nodal involvement and distant metastases were comparable although the local ¶(laryngeal) recurrence rate in patients with early supraglottic (T2) disease in the BSC group after conservative partial surgery was distinct compared to the control group (P 〈 0.05). These results indicate that conservative surgery should be assessed with caution in patients with BSC, and postoperative irradiation be taken into consideration.
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  • 146
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    European archives of oto-rhino-laryngology and head & neck 257 (2000), S. 517-520 
    ISSN: 1434-4726
    Keywords: Key words Nucleolar organizer region ; Nasopharyngeal carcinoma ; Silver-staining ; Prognosis ; Outcome
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Increased expression of argyrophilic nucleolar organizer regions (AgNORs) has been identified in certain malignant tumors including nasopharyngeal carcinoma (NPC). However, its prognostic significance in NPC is uncertain and remains to be evaluated. To address this we silver-stained 63 paraffin sections of NPC cases, and examined the correlation between AgNOR count and area, calculated by the CAS 200 image analysis system, and tumor behavior, locoregional control, and survival of patients. The mean AgNOR count and area were 1.62 ± 0.31 and 3.98 ± 11.4 μm2, respectively. The AgNOR area was positively associated with T stage (r = 0.26, P = 0.04). The Mann-Whitney test confirmed no significant difference in AgNOR area and count between patients with different outcomes. Multivariate analysis using the Cox proportional hazard model showed neither AgNOR count nor area to be significant predictors of actuarial survival or disease-free survival. It is concluded that AgNOR does not have an independent and significant prognostic value in NPC. AgNOR expression may be merely a reflection of malignant phenotype as well as cellular activity but not necessarily the ultimate behavior of the tumor.
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  • 147
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    Neurological sciences 21 (2000), S. S831 
    ISSN: 1590-3478
    Keywords: Key words Multiple sclerosis ; Prognosis
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Two hundred and twenty-four patients at their first diagnosis of multiple sclerosis (MS) were prospectively followed for a mean period of 9.78 years. We considered as endpoints the time to reach non-reversible disability levels corresponding to EDSS scores of 4.0 and 6.0, and the beginning of a secondary progressive phase in the relapsing-remitting subgroup of patients. An initially progressive course and higher basal EDSS scores proved to be the best predictors of unfavorable prognosis. A greater number of functional systems involved at onset as well as higher residual deficits in pyramidal, visual, sphincteric and cerebellar systems were other factors predictive of a poor outcome, whereas sensory system involvement turnet out to be favorable. A longer first inter-attack interval was associated with a better prognosis. However, overall number of relapses in the first two years of the disease was of no prognostic value. The presence of oligoclonal banding in the cerebrospinal fluid and a cerebral MRI exam strongly suggestive or suggestive of MS in the early phases of the disease were associated with a higher probability of a worse outcome.
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  • 148
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    Neurological sciences 21 (2000), S. S861 
    ISSN: 1590-3478
    Keywords: Key words Multiple sclerosis ; Early onset ; Prognosis
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Multiple sclerosis (MS) onset is usually in adult life (age 20–40 years). Discordant data have been reported concerning the frequency of early onset MS (EOMS) that ranges from 2.7% to 5%, whereas there is a general agreement on prevalence of female sex, particularly after puberty. The initial symptoms in EOMS are frequently characterized by visual loss whereas the other functional systems are involved with a variable frequency. Literature data show that EOMS tends to have a relapsing-remitting course, a high rate of recovery from the initial attack, a long time interval between the first and second attacks and a slow progression rate. A poor prognosis is reported in a few cases of EOMS and seems to be related to number of relapses and to the delay between the first and second attacks.
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  • 149
    ISSN: 1590-3478
    Keywords: Key words Sneddon's syndrome ; Primary antiphospholipid syndrome ; Differential diagnosis ; Prognosis
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract We performed a study to investigate differences and similarities between patients with Sneddon's syndrome and those with primary antiphospolipid syndrome (PAS), by clinical follow-up, magnetic resonance imaging (MRI) and angiography. Nine patients with Sneddon's syndrome and 11 patients with PAS were assessed at diagnosis and followed for a mean fo 6 years. The clinical and MRI findings indicated that Sneddon's syndrome and PAS are distinct entities. Patients with Sneddon's syndrome had a progressive clinical course with increasing disability and cognitive deterioration; patients with PAS had a more benign course. Infarcts in territories of the main cerebral arteries were frequent in PAS, while leukoaraiosis and smaller lacunar infacts were more comon in Sneddon's syndrome. In 3 of 7 women initially diagnosed with PAS, the diagnosis was changed to systemic lupus erythematosus during follow-up. Differential diagnosis of Sneddon's syndrome and PAS is important, as early therapy is effective for the latter, more benign, condition.
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  • 150
    ISSN: 1590-3478
    Keywords: Key words Recurrent stroke ; Causes ; Prognosis
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Recurrent strokes are an important cause of morbidity and mortality. Identification of the causes of recurrence and its treatment may play an essential role in the prevention of further strokes. The aim of our work is to analyze the type and causes of stroke recurrence in a 5-year period and to determine if recurrent stroke is of the same type as index stroke. In a retrospective study, we reviewed the clinical records and database of our hospitals and found a total of 1108 patients admitted because of primary stroke. The patients with recurrent stroke were selected for a comprehensive analysis. Age, vascular risk factors and fatality rates of these patients were compared with those obtained in recurrence-free patients. We identified 135 patients with recurrent stroke. The most frequent type of recurrence was large vessel atherothrombotic stroke followed by the cardioembolic or lacunar stroke. The major contributing factors were hypertension, atrial fibrillation, and cardiomyopathies. The fatality rate did not differ from the overall mortality by stroke in these years, but the majority of deaths occurred in long-term recurrences. The functional status was worse after recurrent stroke than after index stroke. Although any pattern of recurrence is possible. There is a major trend to occur in the same vascular territory by the same pathophysiologic mechanism. Recurrent stroke frequently carries a worse functional status than index stroke. In many patients, despite the appropriate treatment, stroke recurrence was an unavoidable consequence.
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  • 151
    ISSN: 1590-3478
    Keywords: Key words Peroneal nerve ; Mononeuropathy ; Predisposing factor ; Electrodiagnosis ; Prognosis ; Peroneal mononeuropathy
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The most common mononeuropathy in the lower extremity involves the nerve. We retrospectively evaluated the etiological predisposing factors and clinical-neurophysiological features of 36 patients affected by peroneal mononeuropathy (PM). In 30 patients, a clear predisposing factor was identified. PM was more frequently perioperative (11 cases), associated with axonal involvement. Unexpectedly, PM was not only due to surgery close to the peroneal region, but was mostly associated with hip surgery and, rarely, with thoracic-abdominal surgery. A postural predisposing factor of PM was also frequently observed, usually associated with a pure conduction block. Conversely, most patients with bedridden predisposing factor presented axonal involvement, which was rarely associated with conduction block. In 25 of 36 PM cases, a long-term follow-up lead to an improvement (12 cases) or to good recovery (13 cases) of PM. In conclusion, our study shows that: (1) in most PM cases it is possible to identify a predisposing factor; (2) there is a good correlation between predisposing factor and neurophysiological involvement, and (3) PM usually has usually a good prognosis.
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  • 152
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    Neurological sciences 21 (2000), S. S849 
    ISSN: 1590-3478
    Keywords: Key words Multiple sclerosis ; Trauma ; Stress ; Prognosis
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract It has been suggested that physical trauma, involving the cervical spinal cord or the brain, and psychological stress may precede MS onset or may influence the disease course, although this hypothesis has mainly come from anecdotal case reports or small uncontrolled or controlled studies. So far there are no studies providing a clear causative relationship between physical trauma (especially head trauma) and MS onset, exacerbation or progression of the disease. On the other hand, recent MRI and experimental studies, supporting the important role of nervous and immune system interactions, particularly by the hypothalamic-pituitary-adrenal axis and by the sympathetic nervous pathways, seem to demonstrate a significant correlation between stress and MS exacerbations. Further, frequent MRI and immunological evaluations should be warranted to objectively document the temporal association between stress and clinical and/or sub-clinical disease activity.
    Type of Medium: Electronic Resource
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