Needs of persons living with ALS at home and their family caregivers: A scoping review.
Heather M YoungTina R KilaberiaRobin WhitneyBenjamin M LinkJanice F BellOrly TonkikhJessica FamulaBjörn E OskarssonPublished in: Muscle & nerve (2023)
This review describes biopsychosocial and equipment interventions over the trajectory of ALS with implications for anticipatory planning by clinicians, as well as policy for coverage of necessary services and supports. Interdisciplinary expert teams could develop consensus around needs across the trajectory and recommended services and supports. To make knowledge more accessible, encourage availability of services, and clarify the need for coverage of services, we aim to develop an expert consensus-based ALS home health medical standard guidance document in collaboration with the American Association of Neuromuscular and Electrodiagnostic Medicine.