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.
"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. "
[Show abstract][Hide abstract] 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.
The Veterinary Journal 07/2015; DOI:10.1016/j.tvjl.2015.07.016 · 1.76 Impact Factor
"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. "
[Show abstract][Hide abstract] 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.
Hereditary Cancer in Clinical Practice 04/2014; 12(1):9. DOI:10.1186/1897-4287-12-9 · 1.47 Impact Factor
"Investigating aspects of response shift among patients with a disability might seem questionable. One might assume that patients with a disability find a certain balance after going through rehabilitation . However, we examined the aspects of response shift in the subinitial phase after injury. "
[Show abstract][Hide abstract] ABSTRACT: The aim of our study was to investigate anticipated adaptation among patients in the subacute phase of Spinal Cord Injury (SCI).
We used an observational longitudinal design. Patients with SCI (N = 44) rated their actual, previous and expected future Quality of Life (QoL) at three time points: within two weeks of admission to the rehabilitation center (RC), a few weeks before discharge from the RC, and at least three months after discharge. We compared the expected future rating at the second time point with the actual ratings at the third time point, using student's t-tests. To gain insight into scale recalibration we also compared actual and previous ratings.
At the group level, patients overpredicted their improvement on the VAS. Actual health at T3(M = 0.65, sd =0.20)) was significantly lower than the predicted health at T1 of T3 (M = 0.76, sd = 0.1; t(43) = 3.24, p < 0.01), and at T2 of T3(M = 0.75,sd = 0.13; t(43) = 3.44, p < 0.001). Similarly the recalled health at T3 of T2 (M = 0.59, sd = 0.18) was significantly lower than the actual health at T2 (M = 0.67, sd = 0.15; t(43) = 3.26, p <0.01). Patients rated their future and past health inaccurately compared to their actual ratings on the VAS. In contrast, on the TTO patients gave accurate estimates of their future and previous health, and they also accurately valued their previous health. Looking at individual ratings, the number of respondents with accurate estimates of their future and previous health were similar between the VAS and TTO. However, the Bland-Altman plots show that the deviation of the accuracy is larger for the TTO then the VAS. That is the accuracy of 95% of the respondents was lower in the TTO then in the VAS.
Patients at the onset of a disability were able to anticipate adaptation. Valuations given on the VAS seem to be biased by scale recalibration.
Health and Quality of Life Outcomes 10/2013; 11(1):171. DOI:10.1186/1477-7525-11-171 · 2.12 Impact Factor
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