Home care of patients with amyotrophic lateral sclerosis (ALS)

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 fare 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 us, 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 fare received by patients with ALS often is inadequate and too late to relieve the burden plated on family caregivers. (C) 1997 Elsevier Science B.V.