Response Shift Theory: Important Implications for Measuring Quality of Life in People With Disability
Measurement of health-related quality of life (HRQOL) in people with disability can be problematic. Ambiguous or paradoxical findings can occur because of differences among people or changes within people regarding internal standards, values, or conceptualization of HRQOL. These "response shifts" can affect standard psychometric indices, such as reliability and validity. Attending to appraisal processes and response shift theory can inform development of HRQOL measures for people with disability that do not confound function and health and that consider important causal indicators such as environment. By design, most HRQOL measures equate function with health, necessarily leading to a lower measured HRQOL in people with functional impairments regardless of their level of self-perceived health. In this article, we present theoretical and conceptual distinctions building on response shift theory and other current developments in HRQOL research. We then submit a set of suggested directions for future measurement development in populations with disabilities that consider these distinctions and extend their use in future measurement developments.
Available from: bmcnephrol.biomedcentral.com
- "The accurate assessment of the effect of transplantation for instance can then be obfuscated by RS and lead to biased results, poor power to detect effects of interest and therefore, erroneous conclusions18192021. Indeed, RS can seriously alter the psychometric properties of PRO such as reliability, validity and ability to detect true changes (responsiveness). On the other hand, one can also highlight the therapeutic importance that the phenomenon of RS constitutes in itself by allowing a better understanding of how patients adjust to their illness. "
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ABSTRACT: Background Treatment of end stage renal disease has an impact on patients’ physical and psychological health, including quality of life (QoL). Nowadays, it is known that reducing the dialysis period has many advantages regarding QoL and medical outcomes. Although preemptive transplantation is the preferred strategy to prevent patients undergoing dialysis, its psychological impact is unknown. Moreover, transplantation can be experienced in a completely different manner among patients who were on dialysis and those who still had a functioning kidney at the time of surgery. Longitudinal data are often collected to allow analyzing the evolution of patients’ QoL over time using questionnaires. Such data are often difficult to interpret due to the patients’ changing standards, values, or conceptualization of what the questionnaire is intended to measure (e.g. QoL). This phenomenon is referred to as response shift and is often linked to the way the patients might adapt or cope with their disease experience. Whether response shift is experienced in a different way among patients who were on dialysis and those who still had a functioning kidney at time of surgery is unknown and will be studied in the PreKit-QoL study (trial registration number: NCT02154815). Understanding the psychological impact of pre-emptive transplantation is an important issue since it can be associated with long-term patient and graft survival. Methods/Design Adult patients with a pre-emptive transplantation (n = 130) will be prospectively included along with a control group of patients with a pre-transplant dialysis period < 36 months (n = 260). Only first and single kidney transplantation will be considered. Endpoints include: comparison of change between groups in QoL, anxiety and depressive disorders, perceived stress, taking into account response shift. These criteria will be evaluated every 6 months prior to surgery, at hospital discharge, at three and six months, one and two years after transplantation. Discussion The PreKit-QoL study assesses and compares the evolution of QoL and other psychological criteria in preemptive and dialyzed patients taking patients’ adaptation into account through response shift analyses. Our study might help to conceive specific, adapted educational programs and psychological support to prevent a possible premature loss of the kidney as a consequence of non-compliance in patients that may be insufficiently prepared for transplantation. Trial registration ClinicalTrials.gov identifier NCT02154815, registered on May 28, 2014
Available from: Naomi D Harvey
- "j o u r n a l h o m e p a g e : w w w. e l s e v i e r. c o m / l o c a t e / t v j l well acts as a proxy (Eiser and Morse, 2001). Studies where self and proxy reports were compared (Janse et al., 2005; April et al., 2006; Vetter et al., 2012) found that proxy reporters might rate nonphysical aspects of QoL lower than ratings by the self-reporter; this is known as the 'disability paradox' (Ubel et al., 2005; Schwartz et al., 2007). It is unclear whether the 'disability paradox' also exists in veterinary medicine. "
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ABSTRACT: Assessment of quality of life (QoL) is an important, increasingly popular outcome measure in veterinary research and practice, particularly in dogs. In humans, QoL is commonly assessed by self-reporting and since this is not possible for animals, it is crucial that instruments designed to measure QoL are tested for reliability and validity. Using a systematic, replicable literature search strategy, the aim of this study was to find published, peer-reviewed instruments for QoL assessment in dogs and to assess the quality of these. CAB Abstracts and PubMed were searched in July 2013 using terms relevant to dogs, wellbeing and QoL. Inclusion and exclusion criteria were applied. When instruments were not published in full, authors were contacted to obtain them. Criteria were applied to assess the quality, validity and reliability of the 52 instruments obtained. Twenty-seven additional instruments used in peer-reviewed publications were not included because they had not been fully described in the publication or were not provided by authors upon request.
Most of the instruments reviewed (48/52) were disease-specific rather than generic. Only four publications provided a definition of QoL or wellbeing. Only 11/52 instruments demonstrated evidence of assessing reliability or validity, and the quality of these instruments was variable. Many novel, unvalidated instruments have been generated and applied as clinical outcomes before it was known whether they measured QoL. This rapid review can be used to identify currently available and validated canine QoL instruments, and to assess the validity and quality of new or existing instruments.
Available from: Lauren Vanhusen
- "This finding could reflect a response shift among women who had a RRM prior to testing. Response shift refers to a recalibration, reprioritization or reconceptualization of quality of life over time following an impactful event . Perhaps women who had an RRM prior to testing have had more time living with the impact of their surgery and as a result are more likely to exhibit response shift. "
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ABSTRACT: As BRCA1/2 testing becomes more routine, questions remain about long-term satisfaction and quality of life following testing. Previously, we described long term distress and risk management outcomes among women with BRCA1/2 mutations. This study addresses positive psychological outcomes in BRCA1/2 carriers, describing decision satisfaction and quality of life in the years following testing METHODS: We evaluated satisfaction with testing and management decisions among 144 BRCA1/2 carriers. Prior to genetic testing, we assessed family history, sociodemographics and distress. At a mean of 5.3 years post-testing, we assessed management decisions, satisfaction with decisions and, among women with cancer, quality of life.
Overall, satisfaction with decision making was high. Women who had risk reducing mastectomy or oophorectomy were more satisfied with management decisions. Participants who obtained a risk reducing oophorectomy were more satisfied with their genetic testing decision. Among affected carriers, high pretest anxiety was associated with poorer quality of life and having had risk reducing mastectomy prior to testing was associated with better quality of life. The negative impact of pre-test anxiety was diminished among women who had mastectomies before testing.
BRCA1/2 carriers are satisfied with their testing and risk management decisions and report good quality of life years after testing. Having risk reducing surgery predicts increased satisfaction and improved quality of life.
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