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- W3036681635 abstract "•Identify at least two barriers to goals of care conversations in this population.•Articulate the emergent theory of how adolescents/young adults with Duchenne Muscular Dystrophy relate disease progression with reevaluating their goals of care. Duchenne Muscular Dystrophy (DMD) is a progressive, life-limiting disease that has evolved into a chronic illness of “unanticipated adults” living into their fourth decade. How these young men appreciate physical changes of disease progression, and whether and how they relate changes to care preferences, is unknown. This knowledge is required in order to design interventions to improve goals of care (GoC) communication. We are executing a 2-site grounded theory study of young men with DMD (11 years and older), and their caregivers, using a semi-structured interview guide. A total of 16 interviews are completed (n=10 caregivers; n=6 patients, median age 26 years, range 11-33). We anticipate completing 32 additional interviews (n=14 caregivers, n=18 patients). The following themes have emerged: (1) reconsideration of GoC is frequently deferred, in part due to extended periods of disease stability; (2) outpatient providers focus on immediate health status and inpatient providers focus on returning patient to baseline status, but neither focus on GoC; (3) lack of experience with autonomous decision making; and (4) patient trust that caregiver will make the best choice for them. Caregivers describe that preparation for physical changes and their implications is derived from DMD support groups. Patients describe that revised GoC focus on improving quality of life by increasing physical comfort and mobility, frequently with improvised devices. The interview guide will be revised to deepen understanding of why patients and caregivers who have GoC conversations believe they are important, and what factors make those conversations successful. Purposeful sampling to include more adolescents is needed. Anticipated completion of data collection and analysis is winter, 2020. Community-based support groups may be an underutilized resource to promote reconsideration of GoC due to disease progression." @default.
- W3036681635 created "2020-06-25" @default.
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- W3036681635 date "2020-07-01" @default.
- W3036681635 modified "2023-10-17" @default.
- W3036681635 title "Relating Physical Decline with Reevaluating Goals of Care: A Qualitative Study of Young Men with Duchenne Muscular Dystrophy and Their Caregivers (RP405)" @default.
- W3036681635 doi "https://doi.org/10.1016/j.jpainsymman.2020.04.073" @default.
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