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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: The shortage of primary care providers and the provisions of the Affordable Care Act (ACA) have spurred discussion about expanding the number, scope of practice (SOP), and independence of primary care nurse practitioners (NPs). Such discussions in the media and among professional organizations may insinuate that changes to the laws governing NP practice will engender acrimony between practicing physicians and NPs. However, we lack empirical, descriptive data on how practicing professionals view NP independence in primary care.Objective: The aim of the present study was to explore and describe the attitudes about NP independence among physicians and NPs working in primary care.Design: A qualitative study based on the principles of grounded theory.Participants: Thirty primary care professionals in Missouri, USA, including 15 primary care physicians and 15 primary care NPs.Approach: Semi-structured, in-depth interviews, with data analysis guided by grounded theory.Key Results: Participants had perspectives that were not well represented by professional organizations or the media. Physicians were supportive of a wide variety of NP roles and comfortable with high levels of NP independence and autonomy. Physicians and NPs described prerequisites to NP independence that were complementary. Physicians generally believed that NPs needed some association with physicians for patient safety, and NPs preferred having a physician readily accessible as needed. The theme "knowing your limits" was important to both NPs and physicians regarding NP independence, and has not been described previously in the literature.Conclusions: NP and physician views about NP practice in primary care are not as divergent as their representative professional organizations and the news media would suggest. The significant agreement among NPs and physicians, and some of the nuances of their perspectives, supports recommendations that may reduce the perceived acrimony surrounding discussions of NP independent practice in primary care. [ABSTRACT FROM AUTHOR]