Carolyn E. Schwartz

Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research.

The impact of health state changes on an individuals quality of life (QOL) has gained increased attention in social and medical clinical research. An emerging construct of relevance to this line of investigation is response shift phenomenon. This construct refers to the changes in internal standards, in values, or in the conceptualization of QOL which are catalyzed by health state changes. In an effort to stimulate research on response shift, we present methodological considerations and promising assessment approaches for measuring it in observational and interventional clinical research. We describe and evaluate individualized methods, preference-based methods, successive comparison methods, design approaches, statistical approaches and qualitative approaches. The hierarchical structure of the construct is also discussed, with particular emphasis on how it might be elucidated by empirical assessment which uses the proposed methods and approaches. It is also recommended that criterion measures of change be included in future studies of response shift.

Helping others helps oneself: response shift effects in peer support

The present work explores the impact of helping others on the physical and psychosocial well-being of the provider. Lay people were trained to listen actively and to provide compassionate, unconditional positive regard to others with the same chronic disease. The recipients of the peer support intervention were participants of a psychosocial randomized trial, whereas the peer supporters were study personnel and were therefore not randomized. We describe a secondary analysis of a randomized trial to explore the impact of being a peer supporter on these lay people. Subjects were 132 people with multiple sclerosis, all of whom completed quality-of-life questionnaires 3 times over 2 years. A focus group was also implemented with the peer telephone supporters 3 years after completion of the randomized trial. Effect size was computed for each quality-of-life outcome, and the focus group discussion was content analyzed. We found that compared to supported patients, the peer telephone supporters: (1) reported more change in both positive and negative outcomes as compared to the supported patients and that the effect size of these changes tended to be larger (chi2 = 9.6, df = 4, p < 0.05) and (2) showed pronounced improvement on confidence, self-awareness, self-esteem, depression and role functioning. Content analysis revealed that the participants articulated a sense of dramatic change in their lives in terms of how they thought of themselves and in how they related to others. We conclude with a discussion of response shift, a mediator of adaptation to illness which involves shifting internal standards, values, and concept definitions of health and well-being. We suggest that a response shift may be induced by a therapeutic strategy involving the externalization and re-internalization of concern among physically ill patients.

Adaptation to changing health. Response shift in quality-of-life research

A discussion of the impact that health changes have on ones perceived quality of life. It discusses the theoretical underpinnings of the response-shift construct, methodology for assessment in primary and secondary analyses, and application to treatment outcomes research.

TEACHING COPING SKILLS ENHANCES QUALITY OF LIFE MORE THAN PEER SUPPORT : RESULTS OF A RANDOMIZED TRIAL WITH MULTIPLE SCLEROSIS PATIENTS

This 2-year randomized trial of multiple sclerosis patients compared a coping skills group (n = 64) with peer telephone support (n = 68). Growth curve analyses that adjusted for neurological deterioration and gender revealed that the coping skills intervention yielded gains in psychosocial role performance, coping behavior, and numerous aspects of well-being. In contrast, the peer support intervention increased external health locus of control but did not influence psychosocial role performance or well-being. Subgroup analyses revealed that patients with affective problems were more likely to benefit from the peer support intervention than the coping skills group in terms of reported depression, anxiety, use of avoidant coping, and some aspects of well-being. The coping group is discussed as a vehicle for facilitating response shift, helping patients to change their internal referents, their conceptualization of quality of life, and their priorities.

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

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

Self-Reported Coping Behavior in Health and Disease: Assessment With a Card Sort Game

The authors tested the hypothesis that individuals with a variety of severe chronic illnesses and the healthy elderly exhibit a loss of flexibility in their response to a variety of stressors, compared with healthy adults. A card sort game designed to assess self-reported coping behavior under different stressful life situations was used to compare healthy adults with individuals with multiple sclerosis, rheumatoid arthritis, systemic lupus erythematosus, and the elderly. The healthy adults were found to exhibit more variability than any of the illness groups or the elderly. Healthy function is marked by a complex type of variability.

A comparison of two approaches for assessing patient importance weights to conduct an Extended Q-TWiST analysis.

Objective: Patient-centered methods for evaluating treatments require validated preference-elicitation techniques. We describe the validation of two preference-elicitation approaches for use in an Extended Q-TWiST treatment evaluation. The first method was an “idiographic” approach, which attempts to capture intra-individual differences in the degree to which each domain distracted from and interfered with life activities. The second method, a Likert-scaled approach, asks patients to evaluate the importance of each quality-of-life (QOL) domain. Methods: Patient-reported QOL and preferences were assessed in participants with gastroesophageal reflux disease at baseline (n = 172), one week (n = 25), and 4 weeks after baseline (n = 100). Results: Both approaches demonstrated high internal consistency and the ability to discriminate known groups based on reported pain and number of days with symptoms. The idiographic approach exhibited responsiveness, although it was more highly correlated with QOL than the Likert-scaled approach. The Likert-scaled approach had good face validity but demonstrated low reliability compared to the idiographic approach. Conclusions: Both preference-elicitation methods exhibited promise as well as limitations. Future research should focus on increasing the reliability of the Likert-scaled approach, reducing the overlap between the idiographic approach and QOL, and examining the relationship between reliability and responsiveness for a range of illness trajectories.

Covariation of physical and mental symptoms across illnesses: Results of a factor analytic study

Objective: Chronic illnesses are associated with reports of symptoms, problems, and dysfunction along multiple dimensions. To determine if the dimensionality is disease-specific and whether physical and emotional symptoms are concomitant and inseparable aspects of the illness experience, we present a factor analysis of symptom and problem reports from five different chronic conditions. Method: People with five different conditions participated in this study: multiple sclerosis (MS) (n=263), non-insulin-dependent diabetes mellitus (n=420), nonhead nonneck injury trauma (n=852), and a group of terminal patients comprised of acquired immune deficiency syndrome (AIDS) (n=99) and cancer (n=74) patients. Participants were asked to complete the Quality of Well-Being Scale (QWB) and symptom items from the QWB were factor analyzed. Results: Both within each condition and across conditions, two factors accounted for the majority of the explained variance and could be described as an Observable Limitations factor and a Subjective Symptoms factor. Conclusions: Our factor analyses suggest that physical and emotional symptoms covary and are common to different types of illness.