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 populatio n. Ninety-eight patients with ALS completed our survey. Of these, 24 r eceive non-hospice home care, nine hospice home care, and seven both h ospice and non-hospice home care. Fifty-eight patients receive no outs ide help. Patients receiving hospice are older than those receiving no n-hospice home care (68.9 vs. 57.7 years, P < 0.05). Patients with hom e fare assistance have a mean ALS Functional Rating Scale (ALS FRS) sc ore 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 wit h Medicare and 5 h/week with commercial insurance, P = 0.008). Primary caregivers spend a median of 11 h/day caring for patients despite hav ing home care assistance. Forty-two and 48% of primary caregivers feel physically and psychologically unwell, respectively. Home fare receiv ed by patients with ALS often is inadequate and too late to relieve th e burden plated on family caregivers. (C) 1997 Elsevier Science B.V.