Invited Review: Nutrition outcomes of disease modifying therapies in spinal muscular atrophy: A systematic review-Article

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A scoping review was conducted to identify the home health and care needs of individuals living with amyotrophic lateral sclerosis (ALS) at home and their family caregivers. The review included 44 studies published between 2011 and 2021 and revealed four major areas of needs: emotional/psychological, assistive devices and technology, information and education, and human resources and professional services.<br /><br />Emotional and psychological needs were commonly reported, with caregivers experiencing burden, strain, anxiety, and depression. Caregivers also expressed worries and concerns related to caregiving capabilities and other responsibilities. Social support and mutual help were found to be important in alleviating isolation and increasing feelings of support for caregivers.<br /><br />The need for assistive devices and technology was also highlighted. Access to personal assistive devices, durable medical equipment (DME), and in-home modifications was crucial to prolonging independence for individuals with ALS. Financial concerns and insurance coverage were identified as barriers to accessing these devices.<br /><br />Information and education needs were unmet for both individuals with ALS and their caregivers. Many turned to the internet and online ALS communities to fill knowledge gaps, particularly regarding disease progression, symptom management, treatment options, and self-care advice. Incremental delivery of information and the need for disease-stage specific learning were identified.<br /><br />Lastly, there were needs related to human resources and professional services. Homecare services, such as personal care and housekeeping, were identified as important needs. Specialty care and expertise to manage the unique needs of individuals with ALS, including dysphagia, mobility, communication, and pain management, were also crucial. Care coordination, respite care, and palliative care needs were also reported.<br /><br />Overall, the review revealed that the needs of individuals with ALS and their caregivers were not being met in a proactive manner, despite the predictable trajectory of the disease. Interdisciplinary care, including home healthcare and end-of-life care, was suggested as a way to address these needs. Policy implications related to insurance coverage, access to services, and the development of an ALS home health medical standard guideline were also discussed.

Keywords

ALS

amyotrophic lateral sclerosis

home health

care needs

family caregivers

emotional needs

assistive devices

information education

professional services

care coordination

policy implications

amyotrophic lateral sclerosis

ALS