Assessing health status quality of life in ALS: comparison of the SIP/ALS-19 with the ALS Functional Rating Scale and the Short Form-12 Health Survey. ALS C.A.R.E. Study Group. Clinical Assessement, Research, and Education

Amyotroph Lateral Scler Other Motor Neuron Disord. 2001 Mar;2(1):31-7. doi: 10.1080/146608201300079391.

Abstract

Background: The progressive loss of function affects the quality of life of the ALS patient. Quality of life depends on a spectrum of factors. Available instruments for assessment include questionnaires developed for generic illness-related disabilities and ALS-specific questionnaires that focus on function.

Methods: Comparisons were made between two ALS-specific questionnaires (ALS Functional Rating Scale and SIP/ALS-19) and a generic instrument (Short Form-12) given to 1,513 patients from the (North American) ALS Patient Care Database.

Results: The SIP/ALS-19 correlates well with the ALS Functional Rating Scale and less well with the Short Form-12.

Conclusions: The SIP/ALS-19 can be used as an effective surrogate for the ALS Functional Rating Scale, with the advantage that the SIP/ALS-19 also includes questions that encompass the psychological and social domains of quality of life.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living / psychology
  • Adult
  • Aged
  • Aged, 80 and over
  • Disability Evaluation
  • Female
  • Follow-Up Studies
  • Health Status*
  • Humans
  • Male
  • Middle Aged
  • Motor Neuron Disease / diagnosis*
  • Motor Neuron Disease / psychology
  • Psychometrics
  • Quality of Life*
  • Sickness Impact Profile*