Mounting evidence for response shifts in quality of life (QOL) appraisal indicates the need to include direct measurement of the appraisal process itself as a necessary part of QOL assessment. We propose that directly assessing QOL appraisal processes will not only improve our ability to interpret QOL scores in the traditional sense, but will also yield a deeper understanding of the appraisal process in the attribution of and divergence in meaning. The published evidence for response shift is reviewed, and an assessment paradigm is proposed that includes the explicit measurement of QOL appraisal process parameters: 1) induction of a frame of reference; 2) recall and sampling of salient experiences; 3) standards of comparison used to appraise experiences; and 4) subjective algorithm used to prioritize and combine appraisals to arrive at a QOL rating. A QOL Appraisal Profile, which measures key appraisal processes, is introduced as an adjunct to existing QOL scales. The proposed theoretical model, building on the Sprangers and Schwartz (1999) model and highlighting appraisal processes, provides a fully testable theoretical treatment of QOL and change in QOL, suggesting hypothesized causal relationships and explanatory pathways for both cross-sectional and longitudinal QOL research.

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Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift

In recent years, there has been increasing emphasis on understanding how the cancer experience affects individuals' quality of life (QOL). The goal of this study was to assess the QOL and to identify psychosocial predictors of QOL among a large sample of patients with a variety of cancers. Specifically, we assessed the unique contribution of demographic variables, medical variables, and social support on patients' QOL and psychological adjustment. Three hundred and fifty-one participants completed measures of social support, depression, anxiety, and QOL at their follow-up medical visits. Analyses indicated that patients who were older and had better social support reported less anxiety (p<0.001), and patients who were older, married or who had more social support reported less depressive symptoms (p<0.01). Men, individuals whose cancer had not recurred, and those not undergoing active treatment reported better QOL in the physical health domain (p<0.05). Patients who were older, married, with more formal education, less advanced disease, and better social support reported better QOL in the mental health domain (p<0.05). Demographic variables (age, gender, marital status, education) were generally associated with measures of adjustment and QOL whereas medical variables (time since diagnosis, recurrence status, treatment variables, stage of disease) were not. Patients with more support reported less anxiety and depression and better QOL in the mental health domain, independent of demographic and medical variables. Assessing patients' level of social support may help to identify patients at risk for distress.

Psychosocial and demographic predictors of quality of life in a large sample of cancer patients.

When individuals experience changes in their health states, they may alter their internal standards, values, or conceptualization of quality of life (QOL). Such ‘response shifts’ can affect or distort QOL outcome measurement, which is of particular concern when evaluating medical or psychosocial interventions. Although clinicians and researchers acknowledge the occurrence of response shifts, little is known about the magnitude and clinical significance of those effects. To fill this gap in knowledge about response shift phenomena, we performed a meta-analysis on published QOL articles on response shift. Extensive literature searches and multiple contacts with researchers yielded a collection of 494 articles for potential reviewing. We retained only published longitudinal studies that measured response shift, resulting in 26, of which 19 reported the requisite data for computing an effect size (ES). We calculated and compared the ESs for each study with regard to potential moderator variables: the QOL domains measured, disease group investigated, sample size, and response shift method used. We rated studies for quality to allow ES weighting. When we examined ES absolute values, we found that ES magnitude was small, with the largest ESs detected for fatigue, followed by global QOL, physical role limitation, psychological well-being, and pain (mean |ESweighted| = 0.32, 0.30, 0.24, 0.12, and 0.08, respectively). ESs varied considerably in direction. Aggregating raw ES scores over all studies led to positive and negative values canceling each other out (mean directional ESweighted = 0.17, 0.02, −0.01, 0.06, and 0.02, respectively). We found little evidence of an effect for the moderator variables examined. A definitive conclusion on the clinical significance of response shift cannot currently be drawn from existing studies. For a number of reasons, ES estimates were primarily based on then-test results, a method that is not without criticism, such as its susceptibility to recall bias. We recommend a standardized approach for reporting results of future response shift research to advance the field and to facilitate interpretation and comparisons across studies.

The clinical significance of adaptation to changing health: a meta-analysis of response shift.

https://www.archives-pmr.org/article/S0003-9993(06)01598-X/pdf

Response Shift Theory: Important Implications for Measuring Quality of Life in People With Disability

This study assessed quality of life, self-esteem and worries in young adult survivors of childhood cancer compared to a group of young adults with no history of cancer. The impact of demographic, medical and treatment factors and self-esteem on survivors' quality of life and worries was studied.

Participants were 400 long-term survivors (LTS) of childhood cancer (age range 16–49 years, 45% female) who had completed treatment an average of 16 years previously and 560 persons (age range 16–53 years, 55% female) with no history of cancer. All participants completed the MOS-24 (Medical Outcome Study Scale), a Worry questionnaire consisting of three scales (cancer-specific concerns, general health concerns, present and future concerns), and the Rosenberg Self-Esteem Scale.

Small to moderate differences were found in mean MOS-24 scores between the LTS group and controls (range effect sizes −0.36–0.22). No significant difference was found in the mean self-esteem scores between LTS and controls. Female LTS had more cancer-specific concerns than male LTS. In several related areas of general health, self-image and dying, the LTS group reported less worries than controls, but LTS worried significantly more about their fertility, getting/changing a job and obtaining insurance's. Multiple linear regression analysis revealed that female gender, unemployment, severe late effects/health problems and a low self-esteem were predictors of worse quality of life in survivors. In addition, age at follow-up, unemployment, years since completion of therapy and a low self-esteem were associated with a higher degree of survivors' worries.

Quality of life and the level of self-esteem in LTS of childhood cancer is not different from their peers. Although many LTS worried not more or even less about health issues than their peers, they often are concerned about some present and future concerns. The investigated factors could explain poor quality of life and worries only to a limited extent. Further research exploring determinants and indices of quality of life and worries in LTS is warranted. Copyright © 2004 John Wiley & Sons, Ltd.

Quality of life, self-esteem and worries in young adult survivors of childhood cancer.

This study examined the impact of response shift on a psychosocial treatment evaluation of 22 young adult cancer survivors. An age-matched cohort of 54 healthy controls were included in the study to provide a comparison for normative levels and structure of quality-of-life (QOL). It was found that this evaluation of a psychosocial intervention for young adult cancer survivors was notably influenced by response shift phenomenon. Standard analyses suggested that the intervention had no impact on measured aspects of well-being. It did appear to yield an immediate gain in reported global QOL, but seemed to cause a significant decline over time. By considering response shift, it was highlighted that an apparently deleterious effect on QOL was largely a function of response shift. This response shift effect was reflected not only in changes in internal standards, but also in values and in conceptualization of QOL. The intervention seemed to have normalized survivors’ conceptualization of QOL so that it was increasingly similar to their age-matched cohort. Future psychosocial intervention research should explicitly consider response shift in a randomized treatment evaluation. Copyright © 1999 John Wiley & Sons, Ltd.

Evguenia Jilinskaia

Papers

An evaluation of a psychosocial intervention for survivors of childhood cancer: paradoxical effects of response shift over time.