Meaning behind measurement : self-comparisons affect responses to health related quality of life questionnaires

Purpose The subjective nature of quality of life is particularly pertinent to the domain of health-related quality of life (HRQOL) research. The extent to which participants’ responses are affected by subjective information and personal reference frames is unknown. This study investigated how an elderly population living with a chronic metabolic bone disorder evaluated self-reported quality of life. Methods Participants (n = 1,331) in a multi-centre randomised controlled trial for the treatment of Paget’s disease completed annual HRQOL questionnaires, including the SF-36, EQ-5D and HAQ. Supplementary questions were added to reveal implicit reference frames used when making HRQOL evaluations. Twenty-one participants (11 male, 10 female, aged 59–91 years) were interviewed retrospectively about their responses to the supplementary questions, using cognitive interviewing techniques and semi-structured topic guides. Results The interviews revealed that participants used complex and interconnected reference frames to promote response shift when making quality of life evaluations. The choice of reference frame often reflected external factors unrelated to individual health. Many participants also stated that they were unclear whether to report general or disease-related HRQOL. Conclusions It is important, especially in clinical trials, to provide instructions clarifying whether ‘quality of life’ refers to disease-related HRQOL. Information on selfcomparison reference frames is necessary for the interpretation of responses to questions about HRQOL.The Chief Scientist Office of the Scottish Government Health Directorates, The PRISM funding bodies (the Arthritis Research Campaign, the National Association for the Relief of Paget’s disease and the Alliance for Better Bone Health)Peer reviewedAuthor final versio

Why bother to 'downshift'? The characteristics and satisfaction of downshifters in the Brisbane-South East Queensland region, Australia

Using the data collected as part of a Quality of Life (QoL) survey in the Brisbane-South East Queensland region (SEQ) of Australia, this paper examines differences in satisfaction levels between downshifters and non-downshifters, and identifies socio-economic predictors of the downshifting phenomenon. Almost 30% of survey respondents are classified as downshifters. Multivariate Analysis of Covariance reveals significant differences between downshifters and non-downshifters in a number of life-satisfaction domains, although the degree to which they were satisfied with their life before downshifting is unknown. Analysis of Covariance shows that downshifters reported a significantly lower level of satisfaction than non-downshifters, especially with respect to satisfaction with the amount of money available to them, independence or freedom, and employment. Multivariate logistic regression analysis reveals that post-secondary education and employment were positively associated with downshifting, while age was significantly associated with downshifting. It is argued that if downshifting is associated with lower levels of satisfaction, intervention may be required to initiate programs to engage downshifters more fully in the workforce by facilitating more flexible work arrangements and an improved working environment