Clinical attention and assistance profile of patients with amyotrophic lateral sclerosis

Arquivos de Neuro-Psiquiatria

Núbia Maria Freire Vieira Lima¹  Anamarli Nucci¹ 

[1],State University of Campinas School of Medical Sciences Department of NeurologyCampinas SP ,Brazil

关键词: amyotrophic lateral sclerosis;    ALSFRS-R scale;    home nursing;    caregivers;    health system;    esclerose lateral amiotrófica;    escala ALSFRS-R;    assistência domiciliar;    cuidador;    sistema de saúde;   

DOI  :  10.1590/S0004-282X2011000200005

来源: SciELO

【 摘 要 】

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.

【 授权许可】

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