title: Home care of patients with amyotrophic lateral sclerosis (ALS).
abstract: Optimal home care maximizes function and quality of life for patients with ALS. We designed a survey to study home care in the ALS population. Ninety-eight patients with ALS completed our survey. Of these, 24 receive non-hospice home care, nine hospice home care, and seven both hospice and non-hospice home care. Fifty-eight patients receive no outside help. Patients receiving hospice are older than those receiving non-hospice home care (68.9 vs. 57.7 years, P<0.05). Patients with home care assistance have a mean ALS Functional Rating Scale (ALS FRS) score of 13, and those without home care assistance have a mean score of 26 (P<0.0001). Patients receiving non-hospice home care assistance have a median of 16 h/week of care, while those with hospice receive 5.5 h/week (P=0.05). Patients on Medicaid receive more hours of home care than those with any other insurance (median 61 vs. 3.4 h/week with Medicare and 5 h/week with commercial insurance, P=0.008). Primary caregivers spend a median of 11 h/day caring for patients despite having home care assistance. Forty-two and 48% of primary caregivers feel physically and psychologically unwell, respectively. Home care received by patients with ALS often is inadequate and too late to relieve the burden placed on family caregivers.
authors.affiliation: ALS Center, Department of Neurology, Cleveland Clinic Foundation, OH, USA.
authors.forename: L S
authors.initials: LS
authors.lastname: Krivickas
authors.forename: L
authors.initials: L
authors.lastname: Shockley
authors.forename: H
authors.initials: H
authors.lastname: Mitsumoto
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology / Q000534:rehabilitation; D017028:Caregivers / Q000523:psychology; D005260:Female; D006699:Home Care Services; D017051:Hospice Care; D006801:Humans; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires