Healthcare Providers’ Practice and Perception on Discussing Life Expectancy with Duchenne Patients and Caregivers: A Mixed Quantitative/Qualitative Survey
Ty Copeland1, Lauren Treat2, Ellen Wagner3, Rachel Schrader3, Aravindhan Veerapandiyan4
1College of Medicine, University of Arkansas for Medical Sciences, 2Childrens Hospital Colorado, 3Parent Project Musucular Dystrophy, 4Arkansas Childrens Hospital/UAMS
Objective:
Characterize common attitudes towards and practices of discussion of prognosis among clinicians caring for patients with DMD and their families.
Background:
Discussion of life expectancy with Duchenne Muscular Dystrophy (DMD) patients/their families is complex and there is little data regarding practice habits. This prognostic information is impactful for patients and their caregivers, particularly 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.
Design/Methods:
A questionnaire with both quantitative/qualitative response fields was sent via email to clinicians who care for DMD patients.
Results:
Fifty-five clinicians responded. Nearly half of respondents (23, 42.6%) endorsed discussing life expectancy at the time of initial diagnosis, referencing the importance of providing all facts up-front. The same amount (23, 42.6%) indicated preference to discuss this sometime after diagnosis, pointing to the “emotional heaviness” at diagnosis that eases with time. Most (34, 61.8%) report initiating these conversations themselves, while others (8, 14.5%) wait for the parents to ask first. All respondents viewed discussion of prognosis as a task for multiple conversations over time - opposed to engaging in a single conversation. Recurring themes included variation in family responses, building rapport over time, limited palliative care access, and the expectation that new medical advances will impact these discussions.
Conclusions:
Most clinicians cite a personal practice regarding discussion of life expectancy in DMD with patients/families, though there is wide variability on when this occurs/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/family preferences and whether standardization of these discussions impacts the quality of medical decision making and patient outcomes.