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

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Tác giả: Joanna V Brooks, Kelstan L Ellis, Taylor H Jersak, Jenni Linebarger, Christian T Sinclair, Jeffery M Statland, Loren Steinfeldt

Ngôn ngữ: eng

Ký hiệu phân loại:

Thông tin xuất bản: United States : Journal of pain and symptom management , 2025

Mô tả vật lý:

Bộ sưu tập: NCBI

ID: 488354

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-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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