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Patient life aspirations in the context of Duchenne Muscular Dystrophy: a mixed-methods case–control study.
- Source :
- Journal of Patient-Reported Outcomes; 9/14/2022, Vol. 6 Issue 1, p1-21, 21p
- Publication Year :
- 2022
-
Abstract
- Background: Aspirations refer to wishes, ways of defining quality of life (QOL), and life goals. Living with chronic illness likely impacts a person's life aspirations. Duchenne Muscular Dystrophy (DMD) is an inherited disorder characterized by the inevitable and progressive loss of ambulation and independence. The present cross-sectional case–control study investigated how aspirations differed between people with DMD and a stratified comparison group of nationally representative children/adults. Methods: A web-based survey was administered October through December 2020. Recruitment was stratified by age group: 8–12, 13–17, and > = 18, reflecting the DMD disability trajectory. Aspirations were measured using qualitative (open-ended) and quantitative (closed-ended) questions. Qualitative prompts asked participants about wishes, how they would define "QOL"; and goals; answers to the prompts were then coded by six trained raters. Quantitative questions included 29 closed-ended goal-delineation items from the QOL Appraisal Profile<subscript>v2</subscript>. These data were analyzed using multivariate models adjusting for propensity scores (demographic differences), and testing for the effects of role (patient or comparison), age, and role-by-age interactions. Results: The study sample of DMD (n = 285) and comparison (n = 292) participants provided open-text data: 577 wishes statements, 283 QOL-definition statements, and 149 goals statements. Inter-rater reliability (kappa = 0.77) reflected good agreement between different raters' codes. Results suggested that people with DMD have aspirations that differ from their peers in several important ways. Both open-text and closed-ended data in both unadjusted and adjusted analyses generally showed that people with DMD were more focused on intrinsic aspirations such as health, healthcare, and independence than their peers. Compared to non-DMD persons, DMD individuals were much less focused on financial or housing concerns, community contributions, or spiritual growth. With age, patients' aspirations focused less on extrinsic aspirations such as careers and work and increasingly emphasized emotion-oriented goals. Patients were markedly less likely to give a direct answer to the open-ended goals question. Conclusion: There were important differences in aspirations between people with DMD and their peers. These findings may be helpful for developing psychosocial interventions. [ABSTRACT FROM AUTHOR]
- Subjects :
- CHRONIC diseases & psychology
STATISTICS
ANALYSIS of variance
VOCATIONAL guidance
NEUROPSYCHOLOGY
ATTITUDE (Psychology)
RESEARCH methodology
CROSS-sectional method
MULTIVARIATE analysis
INTERNET
AGE distribution
WORK
GENETIC disorders
CASE-control method
QUANTITATIVE research
MEDICAL care
DUCHENNE muscular dystrophy
PATIENTS' attitudes
LIFE
COMPARATIVE studies
SURVEYS
QUALITATIVE research
SEX distribution
INTER-observer reliability
QUALITY of life
DESCRIPTIVE statistics
ANALYSIS of covariance
WALKING
RESEARCH funding
ODDS ratio
DEMOGRAPHIC characteristics
GOAL (Psychology)
DISEASE complications
Subjects
Details
- Language :
- English
- ISSN :
- 25098020
- Volume :
- 6
- Issue :
- 1
- Database :
- Complementary Index
- Journal :
- Journal of Patient-Reported Outcomes
- Publication Type :
- Academic Journal
- Accession number :
- 159103660
- Full Text :
- https://doi.org/10.1186/s41687-022-00500-8