title: Clinical attention and assistance profile of patients with amyotrophic lateral sclerosis.
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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Neurology, School of Medical Sciences, State University of Campinas, Campinas, SP, Brazil.
authors.forename: Núbia Maria Freire Vieira
authors.initials: NM
authors.lastname: Lima
authors.forename: Anamarli
authors.initials: A
authors.lastname: Nucci
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000628:therapy*; D017028:Caregivers / Q000706:statistics & numerical data*; D004185:Disability Evaluation; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006699:Home Care Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D055815:Young Adult