A Formal Needs Assessment in Palliative Care Clinic Development for Adolescent/Young Adults (AYAs) with Neuromuscular Disease

A Formal Needs Assessment in Palliative Care Clinic Development for Adolescent/Young Adults (AYAs) with Neuromuscular Disease

Jersak TH; Steinfeldt L; Ellis KL; Brooks JV; Linebarger J; Statland JM; Sinclair CT

Journal of Pain and Symptom Management

2025

Background: Although medical advancements have prolonged survival in Duchenne muscular dystrophy (DMD), it remains a life-limiting diagnosis with numerous challenges. Palliative care is recommended for all patients with DMD, but there is no consensus on the recommended outpatient care model. Our initial objective was to establish a palliative care clinic for adolescents and young adults (AYA) with DMD. Methods: We used the Center to Advance Palliative Care (CAPC) Community-Based Palliative Care Needs Assessment and Decision-Making Tool to identify a patient population, create structured surveys, and conduct stakeholder interviews. We developed a referral process and created a combination in-person/telehealth clinic. Results: Three major themes were identified based on five surveys and two interviews: (1) stakeholder needs, (2) anticipated challenges, and (3) ideas for collaboration. Between December 2022 and August 2023, there were 16 completed referrals with a median patient age of 21.5 years. Conclusion: Using a formal needs assessment tool, we successfully developed a neuromuscular-focused AYA palliative care clinic.

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April List 2025