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  • 1
    Electronic Resource
    Electronic Resource
    Testing for differences in multiple quality of life dimensions: generating hypotheses from the experience of hospital staff (1998)
    Springer
    Quality of life research 7 (1998), S. 479-486 
    Details
    ISSN: 1573-2649
    Keywords: Quality of life ; health status indicators ; significance testing ; randomized controlled trials ; data interpretation ; statistical.
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract In clinical trials with a quality of life (QoL) component, it is usual to monitor several QoL dimensions at several points in time. Multiple significance tests without formal hypotheses are problematic. It is not always feasible to specify a priori hypotheses for all variables. Can such studies be used to generate hypotheses for testing in later research only? We developed a method which can allow for formal hypothesis testing on a data set collected without a priori hypotheses in the protocol. We surveyed experienced physicians and nurses treating patients, to obtain independent expectations about differences in QoL dimensions. These ‘staff expectations’ will be used in the analysis of QoL data collected from breast cancer patients taking part in three randomized trials of adjuvant therapy. We propose frameworks for the informal and formal use of the experience of the staff in testing for group differences in patients' QoL scores. The method described here is anticipated to be useful for QoL studies in general, even when a priori hypotheses were specified before the studies were initiated.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1023/A:1008818206511
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    Paper (German National Licenses)
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  • 2
    Electronic Resource
    Electronic Resource
    Using data from studies of health-related quality of life to describe clinical issues Examples from a longitudinal study of patients with advanced stages of cervical cancer (1999)
    Springer
    Quality of life research 8 (1999), S. 733-742 
    Details
    ISSN: 1573-2649
    Keywords: Cancer ; EORTC QLQ C30 ; Methodology ; Quality of life
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The focus of the paper is to describe how to present data from studies on health-related quality of life (H-QoL) in a way that is simple and clinically relevant. Data from a longitudinal study of patients with advanced stages of cervix cancer are used. One hundred and eighteen patients filled out questionnaires (including EORTC QLQ-C30) 7 times over a period of 2 years. The following issues are considered: (1) The use of a panel for an initial overview of data. (2) The visual difference between using mean and median values. (3) Box-whisker plots to illustrate the variability of the data. (4) The effect of combining categorical data into fewer categories. (5) Individual patient profiles showing the wide variability among patients. (6) A table showing the change of scores over a one-year period. (7) “Prognostic plots” dividing the initial scores and the following scores. (8) Plotting changes over time. (9) Illustration of the impact of non-random drop-out. (10) The effect of drop-out for the patients who fill out two sequential assessments. (11) The use of healthy controls to help answer the question “what is normal?”.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1023/A:1008903818379
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    Paper (German National Licenses)
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  • 3
    Electronic Resource
    Electronic Resource
    Quality of life of Danish women: Population-based norms for the EORTC QLQ-C30 (1997)
    Springer
    Quality of life research 6 (1997), S. 0-0 
    Details
    ISSN: 1573-2649
    Keywords: EORTC-QLQ-C30 ; breast cancer ; gynaecological cancer ; norms
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The aim of this study was to derive population-based norms for women completing the EORTC QLQ-C30 version 1 which is designed for use with patients who have cancer. The study was conducted using two different questionnaires: one designed for use in female patients with breast cancer, the other for those with gynaecological cancers, but both including the EORTC QLQ-C30. The women were drawn from the Danish Central Population Register without knowledge of their health status and divided at random between the two questionnaires. All procedures for collecting data were identical. The response rate for those receiving the gynaecological cancer (GS) questionnaire was 49% and it was 71% for the breast cancer (BS) questionnaire. Detailed comparison between the two samples revealed several EORTC QLQ-C30 items showing a clear difference in distribution of scores between them. Because of this and the possible bias due to the relative low age-related response rate in GS, only the results from the BS are used for constructing norms. The norms cover all 30 single items on the EORTC QLQ-C30 and the nine derived scales, for women in four 10-year age groups commencing at 30 years and for those aged 70-75. Clear trends in, for example, declining ability to undertake strenuous activity are illustrated and quantified. Levels of certain symptoms, such as pain, are surprisingly high although it is recognized that the population sampled will contain a proportion of women with active disease including cancer. We recommend the use of these norms both as an aid to the clinical assessment of an individual patient, and to assist in the interpretation of clinical trial and longitudinal quality of life data. As a secondary result, we note that a population-based sample will have a lower response rate to a questionnaire with more questions, especially if many of these extra questions are on sexual issues.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1023/A:1026461310761
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    Paper (German National Licenses)
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  • 4
    Electronic Resource
    Electronic Resource
    Causal indicators in quality of life research (1997)
    Springer
    Quality of life research 6 (1997), S. 393-406 
    Details
    ISSN: 1573-2649
    Keywords: Quality of life instruments ; construct validity ; multi-item scales ; composite scales ; causal indicators
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract Quality of Life (QOL) questionnaires contain two different types of items. Some items, such as assessments of symptoms of disease, may be called causal indicators because the occurrence of these symptoms can cause a change in QOL. A severe state of even a single symptom may suffice to cause impairment of QOL, although a poor QOL need not necessarily imply that a patient suffers from all the symptoms. Other items, for example anxiety and depression, can be regarded as effect indicators which reflect the level of QOL. These indicators usually have a more uniform relationship with QOL, and therefore a patient with poor QOL is likely to have low scores on all effect indicators. In extreme cases it may seem intuitively obvious which items are causal and which are effect indicators, but often it is less clear. We propose a model which includes these two types of indicators and show that they behave in markedly different ways. Formal quantitative methods are developed for distinguishing them. We also discuss the impact of this distinction upon instrument validation and the design and analysis of summary subscales.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1023/A:1018491512095
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    Paper (German National Licenses)
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  • 5
    Electronic Resource
    Electronic Resource
    The European Organization for Research and Treatment of Cancer Approach to Developing Questionnaire Modules: An Update and Overview (1998)
    Springer
    Quality of life research 7 (1998), S. 291-300 
    Details
    ISSN: 1573-2649
    Keywords: Quality of life ; assessment ; cross-cultural ; questionnaire construction ; cancer
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Study Group has adopted a modular approach to quality of life (QoL) assessment in cancer clinical trials. The core instrument (the EORTC QLQ-C30) covers a range of QoL issues relevant to a broad spectrum of patients with cancer. The QLQ-C30 is designed to be supplemented by more specific subscales (‘modules’) to assess aspects of QoL of particular importance to specific subgroups of patients. Since individual members of the study group were to be involved in module development, guidelines were established. The primary aim of these guidelines was to standardize the module development process in order to ensure uniformly high quality across modules. This paper gives an update of the work completed to date. First, while the guidelines proved practical for module development, producing modules that exhibit adequate levels of psychometric and cross-cultural validity, experience pointed to three areas where the guidelines required more precision. These amendments will be provided and include (1) stricter monitoring of the developmental process from within the study group, (2) the explicit requirement of involvement of the study group and (3) a more precise definition of the criteria to be fulfilled before modules are allowed to be called ‘EORTC modules’. Second, an overview of the modules currently under development or available for general use is provided. These modules include those for body image, high-dose chemotherapy, leukaemia, myeloma, palliative care and the following cancers: bladder, brain, breast, colorectal, head and neck, lung, oesophageal, ophthalmic, ovarian, pancreas and prostate. Finally, the need for the coordination of efforts in module development, both from within and outside the EORTC, is discussed.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1023/A:1024977728719
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    Paper (German National Licenses)
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  • 6
    Electronic Resource
    Electronic Resource
    The European Organization for Research and treatment of cancer approach to quality of life assessment: guidelines for developing questionnaire modules (1993)
    Springer
    Quality of life research 2 (1993), S. 287-295 
    Details
    ISSN: 1573-2649
    Keywords: Quality of life ; assessment ; cross-cultural ; questionnaire construction
    Source: Springer Online Journal Archives 1860-2000
    Topics: Medicine
    Notes: Abstract The EORTC Study Group on Quality of Life (the Study Group) has adopted a modular approach to quality of life (QOL) assessment in cancer clinical trials. A ‘core’ instrument—the QLQ-C30—has been designed to cover a range of QOL issues relevant to a broad spectrum of cancer patients. It is intended that this QLQ-C30 be supplemented by more specific subscales (‘modules’) to assess aspects of QOL of particular importance to specific subgroups of patients. Since individual members of the Study Group were to be involved in module development, guidelines were required to standardize the module development process in order to ensure uniformly high quality across modules. These guidelines are presented in this paper. The term ‘module’ is defined, the composition of modules is outlined, and the criteria used to develop modules are specified. The module development process, consisting of four phases (generation of relevant QOL issues, operationalization of the QOL issues into a set of items, pretesting the module questionnaire, and large-scale field-testing) is described in detail. Further, issues related to cross-cultural instrument development, and the need for monitoring the module development process from within the Study Group are discussed. Finally, experiences with developing two site-specific modules (i.e., for head and neck, and breast cancer), are presented and the extent to which the guidelines meet practical requirements is discussed. The guidelines appear to provide a practical tool for module construction, that can facilitate the development of a comprehensive system for assessing the QOL of cancer patients internationally.
    Type of Medium: Electronic Resource
    URL: http://dx.doi.org/10.1007/BF00434800
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    Paper (German National Licenses)
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