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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 Profilev2. 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]

Background: Patient-reported outcomes (PROs) are used increasingly in routine clinical care and inform policies, reimbursements, and quality improvement. Less is known regarding PRO implementation in routine clinical care for diverse and underrepresented patient populations. Objective: This review aims to identify studies of PRO implementation in diverse and underrepresented patient populations, elucidate representation of clinical specialties, assess implementation outcomes, and synthesize patient needs, concerns, and preferences. Methods: MEDLINE, Embase, Web of Science, CINAHL, and PsycINFO were searched September 2021 for studies aiming to study PRO implementation in diverse and underrepresented patient populations within the United States. Studies were screened and data extracted by three independent reviewers. Implementation outcomes were assessed according to Proctor et al. taxonomy. A descriptive analysis of data was conducted. Results: The search yielded 8,687 records, and 28 studies met inclusion criteria. The majority were observational cohort studies (n = 21, 75%) and conducted in primary care (n = 10, 36%). Most studies included majority female (n = 19, 68%) and non-White populations (n = 15, 54%), while fewer reported socioeconomic (n = 11, 39%) or insurance status (n = 9, 32.1%). Most studies assessed implementation outcomes of feasibility (n = 27, 96%) and acceptability (n = 19, 68%); costs (n = 3, 11%), penetration (n = 1, 4%), and sustainability (n = 1, 4%) were infrequently assessed. Conclusion: PRO implementation in routine clinical care for diverse and underrepresented patient populations is generally feasible and acceptable. Research is lacking in key clinical specialties. Further work is needed to understand how health disparities drive PRO implementation outcomes. Plain English summary: Patient-reported outcomes (PROs) allow doctors and researchers to understand the patient perspective, such as how they are doing physically, mentally, or socially. When used, PROs can improve health and increase satisfaction of patients. Many clinics and hospitals are interested in using PROs in everyday care. Doctors, hospitals, and insurance companies are also using information from PROs to decide if the care they give is good quality. Unfortunately, certain groups of patients, such as racial and ethnic minorities and patients with low income, report worse PROs. Because of these differences, it will be important to make sure that PROs are being collected from all people, but not much is known regarding how this has been done. This study demonstrates what is known so far with regard to using PROs in everyday clinical care for these diverse patient groups. Findings from this study show that PROs can be successfully collected, but more work is needed in certain medical fields, and some types of patients have specific needs, concerns, or preferences with regard to PRO collection. [ABSTRACT FROM AUTHOR]