Home care of patients with amyotrophic lateral sclerosis (ALS).

Full 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.

Author information

Author/s: Krivickas, L S (LS); Shockley, L (L); Mitsumoto, H (H);

Affiliation: ALS Center, Department of Neurology, Cleveland Clinic Foundation, OH, USA.

Journal and publication information

Publication Type: Journal Article

Journal: Journal of the neurological sciences (J Neurol Sci), published in NETHERLANDS. (Language: eng)

Reference: 1997-Oct; vol 152 Suppl 1 (issue ) : pp S82-9

Dates: Created 1998/02/04; Completed 1998/02/04; Revised 2004/11/17;

PMID: 9419061, status: MEDLINE (last retrieval date: 2/18/2009, IMS Date: )

Sourced from the National Library of Medicine. Abstract text and other information may be subject to copyright.

External Links for this article
(including full text providers, if available):

Click Electronic Full-text Provider Links to see options for finding the electronic full text links to this article. Note there may be a subscription or fee required for access to the full text. See our FAQ for information on finding FREE full text articles.

This article may also be located in paper journal collections available in many libraries. Use the Journal and Publication Information above to find the full article.