Use of the international classification of functioning, disability and health to describe patient-reported disability: A comparison of motor neurone disease, Guillain-Barré syndrome and multiple sclerosis in an Australian cohort

Abstract

Purpose: To compare patient-reported disability across three long-term neurological conditions [motor neurone disease (MND), Guillain-Barré syndrome (GBS) and multiple sclerosis (MS)] using the International Classification of Functioning, Disability and Health (ICF). Methods: A prospective cross-sectional survey of Australian community-based persons with MND (n = 44). Their MND-related problems were linked with ICF categories (second level) using open-ended questionnaires and ‘linkage rules’ and compared to similar data collected for GBS (n = 77) and MS (n = 101) participants. Results: MND participants were older (mean age 61 years, GBS 55, MS 49) with more males (66%, GBS 59%, MS 29%). Seventy ICF categories in MND were identified (GBS 41, MS 63): “body function” 15 (GBS 7; MS 18); “body structure” 5 (GBS 3, MS 5); “activities and participation” 40 (GBS 25, MS 30); “environmental factors” 10 (GBS 6, MS 10). The main areas linked in “activities and participation” were mobility, self care, general tasks and demands, domestic life, interpersonal interactions and relationships, major life areas and community, social and civic life; environmental factors included products and technology, natural environment, support and relationships, services, systems and policies. Conclusions: Comparison of three long-term neurological conditions will assist with development of a core set of categories to optimise consensus of care and communication amongst treating clinicians.

Implications for Rehabilitation

• Motor Neurone Disease causes diverse and challenging symptoms and disability.

• A set of relevant ICF categories in Motor Neurone Disease would be useful in both clinical and research settings for optimising care given the rare incidence of Motor Neurone Disease.

• Motor Neurone Disease can be compared to other long-term neurological conditions (Multiple Sclerosis and Guillain-Barré Syndrome) to assist with development of a core set of categories to optimise consensus of care and communication amongst treating clinicians.

Keywords::

• ICF
• motor neurone disease
• Guillain-Barré syndrome
• multiple sclerosis
• environmental factors

Acknowledgements

We would like to thank all our participants with MND and their caregivers, without whom this study would not have been possible. We would also like to thank Associate Professor Paul Talman for his assistance in participant recruitment.

Declarations of interest: This study was supported by the MND research institute of Australia and MND Victoria.