Lessons Learned: Integration of Palliative Care into the Multidisciary Duchenne Muscular Dystrophy Clinic at the University of Rochester


Clinical Management

Poster Number: T320


Debra Guntrum, FNP, University of Rochester Medical Center, Robert Horowitz, MD, University of Rochester Medical Center, Paul Vermilion, MD, University of Rochester Medical Center, Emma Ciafaloni, MD, University of Rochester Medical Center

Objective: To highlight how Palliative Care is integrated into the care of Duchenne muscular dystrophy (DMD) patients throughout the course of the disease starting at time of diagnosis in a multidisciplinary DMD clinic at UR.

Background: Most patients with DMD are diagnosed at around age 5. With advances in both supportive and pharmacologic treatments, it has become common for patients to live into their third and sometimes, fourth decades.
In response to this ever-longer span of living with such a complicated and progressive illness, multiple expert panels have recommended the incorporation of Palliative Care services into DMD treatment teams (2019 publication by MD StarNet). Published guidelines (Lancet Neurology in 2018) have named the patients’ and families’ many clinical needs and the potential benefits of Palliative Care provision throughout the disease course, including specific encouragement to provide advanced care planning expertise. However, despite the well documented needs and benefits of incorporating Palliative Care into the complex and challenging care of patients with DMD, there is little guidance and few illustrations of how best to do so. We seek to redress this knowledge gap by describing a real-world example of Palliative Care’s integration into DMD care throughout the course of the disease, from diagnosis to death.

Results: We will demonstrate through representative DMD patient cases at various ages and stages how we have integrated Palliative Care into our multidisciplinary DMD clinics, both in-person and virtually, starting soon after diagnosis, and with reassessment and re-involvement as needed.
We will also describe: the benefits of our model which have accrued to our Neurology and Palliative Care clinicians; our patients’ and families’ positive responses to Palliative Care’s integration into their care; and our development of, and initial results from, a short patient survey about our integrated care model.

Conclusion: Although guidelines support the involvement of palliative care, little is known or published about how best to operationalize this in the real world. Our multidisciplinary DMD clinic at UR has Palliative Care embedded in clinic and offer telemedicine services as well. We have found improved patient and family acceptance of Palliative Care using this model.