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

Document Type

Article

Publication Date

5-2025

Identifier

DOI: 10.1016/j.jpainsymman.2025.02.006

Abstract

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.

Journal Title

Journal of pain and symptom management

Volume

69

Issue

5

First Page

325

Last Page

329

MeSH Keywords

Humans; Palliative Care; Needs Assessment; Adolescent; Young Adult; Male; Female; Muscular Dystrophy, Duchenne; Neuromuscular Diseases; Adult; Referral and Consultation; Ambulatory Care Facilities; Surveys and Questionnaires

PubMed ID

39984064

Keywords

Adolescent/Young adult; needs assessment; neuromuscular; outpatient; palliative care

Link to Full Text
Library Record

Share

COinS