Health Care Providers' Practices and Perspectives on Discussing Life Expectancy With Patients With Duchenne Muscular...

There is very little published research on how life expectancy discussions are conducted when related to patients with Duchenne muscular dystrophy (DMD). As altered life expectancy plays a large role in overall life planning in DMD patients and caregivers, understanding when/how these conversations originate is an important step in effectively meeting patients' needs. We aim to explore the common practices and approaches among physicians when discussing life expectancy with DMD patients and their caregivers.

A questionnaire with both quantitative and qualitative response fields was sent via email as a Research Electronic Data Capture (REDCap) link to physicians who work with DMD patients. They were identified from the parent project muscular dystrophy (PPMD) database.

Fifty-five physicians completed the survey, with the majority being cardiologists and neuromuscular neurologists. Regarding the timing of life expectancy discussions, 23 (42.6%) endorse having them at the time of initial diagnosis, referencing the importance of providing all facts up front. On the contrary, 23 (42.6%) endorse having them 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 report having 'multiple conversations over time' as opposed to 'a single conversation', noting that things grow easier with time and that parents often "don't hear everything" initially because of the shock and emotional weight of the diagnosis. Recurring themes on qualitative responses include the following: every family responds differently, limited access to palliative care, and families underestimating how long their DMD children will live in light of new medical advances.

Overall, data suggest that the discussion surrounding life expectancy is a fluid process that is different for every family and should be revisited over time. Similarly, it appears there is a wide variety in how/when providers choose to discuss life expectancy - a process that may benefit from standardization across physicians, given parents' frequent underestimation of their children's life expectancy.