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Validity and Responsiveness of Preference-Based Quality-of-Life Measures in Informal Carers: A Comparison of 5 Measures Across 4 Conditions.

ABSTRACT: OBJECTIVES:Carer quality-of-life (QoL) effects are recommended for inclusion in economic evaluations, but little is known about the relative performance of different types of QoL measures with carers. This study evaluated the validity and responsiveness of 3 care-related QoL measures (the Carer Experience Scale [CES], CarerQoL-7D, and ASCOT-Carer), 1 health-related QoL measure (the EQ-5D-5L), and 1 generic QoL measure (the ICECAP-A). METHODS:Validity and responsiveness were assessed in a UK sample of informal carers of adults with dementia, stroke, mental illness, or rheumatoid arthritis. A questionnaire containing the 5 QoL measures was posted to carers identified through the Family Resources Survey (N = 1004). Hypotheses regarding the anticipated associations between constructs related to the QoL of carers were tested to investigate construct validity and responsiveness. RESULTS:Each measure exhibited some level of construct validity. In general, larger effect sizes and stronger associations were detected for the ASCOT-Carer and ICECAP-A measures in the pooled sample and across all conditions. The 5 measures did not exhibit clear responsiveness to changes over a 12-month period in care recipient health status or hours of care provided per week. CONCLUSION:The results of this study provide initial evidence of the validity of care-related, health-related, and generic QoL (capability) measures in informal carers of adults with 4 highly prevalent conditions. Care-related measures were not always more sensitive to constructs associated with QoL of carers compared with generic measures. The performance of the ICECAP-A was comparable with that of the best-performing care-related measure, the ASCOT-Carer.

SUBMITTER: McLoughlin C

PROVIDER: S-EPMC7532692 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Validity and Responsiveness of Preference-Based Quality-of-Life Measures in Informal Carers: A Comparison of 5 Measures Across 4 Conditions.

McLoughlin Carol C Goranitis Ilias I Al-Janabi Hareth H

Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research 20200511 6

<h4>Objectives</h4>Carer quality-of-life (QoL) effects are recommended for inclusion in economic evaluations, but little is known about the relative performance of different types of QoL measures with carers. This study evaluated the validity and responsiveness of 3 care-related QoL measures (the Carer Experience Scale [CES], CarerQoL-7D, and ASCOT-Carer), 1 health-related QoL measure (the EQ-5D-5L), and 1 generic QoL measure (the ICECAP-A).<h4>Methods</h4>Validity and responsiveness were assess ...[more]

PMID: 32540237

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Project description:ObjectiveTest the Velopharyngeal Insufficiency (VPI) Effects on Life Outcomes (VELO) instrument for validity, reliability, and responsiveness.Study designObservational cohort.SettingAcademic tertiary medical center.SubjectsChildren with VPI (n = 59) and their parents (n = 84) were prospectively enrolled from a pediatric VPI clinic.MethodsPediatric speech language pathologists diagnosed VPI using perceptual speech analysis and rated VPI severity and speech intelligibility deficit (each as minimal, mild, moderate, or severe). All parents and youth 8+ years old (n = 24) completed the VELO instrument and other quality-of-life questionnaires at baseline; the first 40 subjects completed the VELO instrument again 2 weeks later. Treatments included Furlow palatoplasty (n = 20), sphincter pharyngoplasty (n = 14), or an obturator (n = 2), and 29 of 36 (81%) subjects completed the questionnaires 3 months posttreatment. VELO was tested with correlations for criterion validity against VPI severity, construct validity against speech intelligibility and velopharyngeal gap size, and concurrent validity against other quality-of-life measures (r > .40 demonstrating validity); for test-retest reliability using intraclass correlation (>.6 demonstrating reliability); and for responsiveness with the 3-month posttreatment measure using the paired t test.ResultsParental responses are reported; youth responses showed similar results. The VELO instrument did not meet criterion validity (r = -.18, P = .10), or functional construct validity (r = -.37, P = .001), but did meet anatomic construct and concurrent validity (each r > .50, P < .01). VELO scores demonstrated excellent test-retest reliability (r = .85, P < .001) and responsiveness (baseline 54 ± 14 to posttreatment 70 ± 18, P < .001).ConclusionVELO provides a VPI-specific quality-of-life instrument that demonstrates concurrent validity, test-retest reliability, and responsiveness to change in quality of life with treatment.

Project description:BackgroundWe aim to describe the health-related quality of life of informal carers and their experiences of primary care.MethodsResponses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).ResultsInformal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.ConclusionsInformal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.

Project description:Validity is not an inherent property of a measurement scale and so evidence for validity relating to its use for particular purposes, with defined populations and in specified contexts must be accumulated. We have published the development of a web-based, generic health-related quality of life instrument (VetMetrica™) to measure the affective impact of chronic disease in cats and provided evidence for its validity in a mixed population of cats, some of which, according to veterinary judgement, were healthy and others of which were suffering from chronic conditions likely to affect their quality of life, often with multiple co-morbidities present. The first aim of the current study was to demonstrate the construct validity of the VetMetrica™ generic instrument when used with cats suffering from osteoarthritis, by testing the hypothesis that the health-related quality of life profile of cats with different severities of osteoarthritis would differ and by demonstrating convergent validity between the health-related quality of life profile scores and independently quantified vet-assessed pain and quality of life impact scores. The latter involved simple correlation analysis and investigation of the relationship between health-related quality of life domain scores and vet-assessed scores, when adjusted for other potential explanatory variables including number of comorbidities and age. Responsiveness-the ability to detect clinically relevant change-is an essential quality for an evaluative instrument and it also provides evidence for "longitudinal validity". Therefore, a second aim of this study was to demonstrate that changes in health-related quality of life domain scores concurred with the clinician's impression of change over time in the health status of cats with osteoarthritis, thus providing evidence for the instrument's responsiveness. Previously, we have reported disagreement between owner and vet impression as to health status in cats in general, but not in relation to any specific disease. Accordingly, the third study aim was to investigate the extent of agreement or disagreement between owner impression of the impact of osteoarthritis on their cats' quality of life and vet impression of such impact. Fifty one percentage of cat owners believed their cats to be perfectly healthy despite a clinician diagnosis of osteoarthritis.

Dataset Information

Validity and Responsiveness of Preference-Based Quality-of-Life Measures in Informal Carers: A Comparison of 5 Measures Across 4 Conditions.

Publications

Validity and Responsiveness of Preference-Based Quality-of-Life Measures in Informal Carers: A Comparison of 5 Measures Across 4 Conditions.

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