Intro: Discussion of life expectancy with patients living with Duchenne Muscular Dystrophy (DMD) and their families is complex and there is little data regarding practice habits. This prognostic information is impactful for patients and their caregivers, particularly in an era when information is readily available online, and disease-modifying treatments are becoming increasingly available. Clinicians also benefit from understanding how peers approach these sensitive topics.
Obj: To characterize the common attitudes towards/practices of discussion of prognosis among providers and clinicians caring for patients with DMD and their families.
Methods: A questionnaire with both quantitative and qualitative response fields was sent via email to clinicians who care for patients living with DMD.
Results: Fifty-five clinicians, the majority of whom were physicians, completed the survey. Nearly half of respondents (23, 42.6%) endorsed preferring to discuss life expectancy at the time of initial diagnosis, referencing the importance of providing all facts up front. Precisely the same number of respondents (23, 42.6%) indicated a preference to discuss life expectancy sometime after diagnosis, pointing to the “emotional heaviness” at diagnosis that eases with time. Most providers (34, 61.8%) report initiating these conversations themselves, while others (8, 14.5%) wait for the parents to ask the question first. All respondents viewed discussion of prognosis as a task spread over multiple conversations at different timepoints, as compared to engaging in a single conversation on this topic. Recurring themes from clinicians included variation in family responses, building rapport over time, limited access to palliative care, and the expectation that new medical advances will impact these discussions.
Conclusion: Most clinicians cite a personal practice regarding discussion of life expectancy in DMD with patients and their families, though there is wide variability on when this occurs and how it gets initiated. All respondents agree that the topic should be revisited over time, rather than viewed as a single event. Clinicians cite many factors that complicate the task of discussing prognosis, including variable physiology, dynamic family needs, and emotional complexity. Future research is needed to explore patient and family preferences and whether standardization of these discussions impacts the quality of medical decision making and patient outcomes.