Please use this identifier to cite or link to this item: http://repositorio.unicamp.br/jspui/handle/REPOSIP/56040
Type: Artigo de periódico
Title: Clinical attention and assistance profile of patients with amyotrophic lateral sclerosis
Author: Lima, NMFV
Nucci, A
Abstract: Objective: To evaluate the functional status of amyotrophic lateral sclerosis (ALS) patients diagnosed at this institution; to analyze hospital and palliative care; to identify patients' knowledge about home care and supportive resources. Method: Twenty-nine patients were evaluated on the ALSFRS-R scale and two semi-structured questionnaires, at the start of the study and every four months thereafter for 1 year. Results: ALSFRS-R score was 30.1 +/- 11.5 initially and 24.4 +/- 10.5 at 1 year. There was an increase in use of physiotherapeutic care and adaptive aids. The primary caregivers were spouses (55.2%), parents/children/cousins (20.7%), friends (10.3%) and private nurses (3.5%); 10.3% of patients had no caregivers. Basic ALS patient care was provided by the public health system. Conclusion: ALS patients' multidisciplinary care was provided by UNICAMP hospital and its outpatient clinics and, in some patients, complemented by a private health plan or personal expenditure. Few ALS patients were aware of the possibility of home nursing. It is necessary to implement national and regional public home nursing in addition to multidisciplinary specialized care of ALS patients.
Subject: amyotrophic lateral sclerosis
ALSFRS-R scale
home nursing
caregivers
health system
Country: Brasil
Editor: Assoc Arquivos Neuro- Psiquiatria
Rights: aberto
Date Issue: 2011
Appears in Collections:Artigos e Materiais de Revistas Científicas - Unicamp

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