Participation restrictions in ambulatory amyotrophic lateral sclerosis patients: Physical and psychological factors

Annerieke C van Groenestijn, Carin D Schröder, Esther T. Kruitwagen-van Reenen, Leonard H van den Berg, Johanna M A Visser-Meily

Research output: Contribution to journalArticleAcademicpeer-review


Introduction: The aim of this study was to assess the prevalence of participation restrictions in ambulatory patients with amyotrophic lateral sclerosis (ALS) and to identify physical and psychological contributory factors. Methods: In this cross-sectional study, self-reported participation restrictions of 72 ambulatory ALS patients were assessed using the social health status dimension (SIPSOC) of the Sickness Impact Profile (SIP-68). Associations between SIPSOC and physical functioning, psychological factors, and demographic factors were analyzed using hierarchical regression analyses. Results: Ninety-two percent of the patients reported participation restrictions; 54.9% could be explained by physical functioning; psychological factors accounted for 8.1% of the variance. Lung capacity, functional mobility, fatigue, and helplessness were independently associated with participation restrictions. Conclusions: Ambulatory ALS patients have participation restrictions, which may be influenced if early ALS care is directed toward lung capacity, functional mobility, fatigue, and feelings of helplessness. Muscle Nerve 56: 912–918, 2017.

Original languageEnglish
Pages (from-to)912-918
Number of pages7
JournalMuscle & Nerve
Issue number5
Early online date10 Jan 2017
Publication statusPublished - Nov 2017


  • Amyotrophic lateral sclerosis
  • Fatigue
  • Helplessness
  • Physical functioning
  • Psychological factors
  • Social participation
  • fatigue
  • social participation
  • physical functioning
  • helplessness
  • amyotrophic lateral sclerosis
  • psychological factors
  • Amyotrophic Lateral Sclerosis/physiopathology
  • Humans
  • Middle Aged
  • Male
  • Young Adult
  • Netherlands
  • Statistics, Nonparametric
  • Aged, 80 and over
  • Adult
  • Female
  • Surveys and Questionnaires
  • Cross-Sectional Studies
  • Sickness Impact Profile
  • Self Report
  • Vital Capacity/physiology
  • Adolescent
  • Physical Examination
  • Quality of Life
  • Aged
  • Activities of Daily Living/psychology
  • Cohort Studies


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