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Journal Review: Needs of persons living with ALS at home and their family caregivers: A scoping review
Journal Review: Needs of persons living with ALS at home and their family caregivers: A scoping review

Introduction/Aims: Most persons with amyotrophic lateral sclerosis (ALS) live at home with support of family caregivers, with escalating complexity of care over the trajectory of the disease requiring resources and support to mitigate negative physical, social, and emotional outcomes.

Methods: This scoping review identifies the home health/home care needs of persons with ALS and their caregivers as a basis for creating a home health medical standard. We used the PRISMA Extension for Scoping Reviews (PRISMA-ScR) to examine studies describing home care needs published between 2011 and 2021.

Results: Our search yielded 481 articles, of which 44 were included with a total of 3592 (9–273) participants. Most studies used a cross-sectional design and 20 (45%) were rated as high quality. We grouped the needs identified as emotional/psychological, assistive devices and technology, information and education, and human resources and professional services. Most studies demonstrated persistent unmet needs and that available interventions were helpful while needs generally were not met proactively, despite the predictable trajectory.

Discussion: 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.

1)Understand the categories and specific items that constitute the key needs for persons with ALS in order to deliver care that addresses these needs;
2) be able to develop team-based care that addresses gaps in meeting these needs;
3)have sufficient information about these needs to collaborate with advocacy and policy-making groups to address them.  

The AANEM is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.

The AANEM designates this enduring material for a maximum of 1 AMA PRA Category 1 Credits TM.  Physicians should claim only the credit commensurate with the extent of their participation in the activity. Credit expires 8/3/2026.


Heather M. Young PhD, RN, FAAN; Tina R. Kilaberia MSW, PhD; Robin Whitney PhD, RN; Benjamin M. Link BS; Janice F. Bell MN, MPH, PhD, FAAN; Orly Tonkikh PhD, RN; Jessica Famula MS; Björn Oskarsson MD, FAAN
Availability: On-Demand
Expires on Aug 03, 2026
Cost: Member: $0.00
Non-Member: $25.00
Credit Offered:
1 CME Credit
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