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 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.