International classification of functioning, disability and health and motor neurone disease rehabilitation

The purpose of this paper is to determine if issues relevant to multidisciplinary rehabilitation care from the perspective of the patient and caregiver can be addressed utilising the International Classification of Functioning, Disability and Health (ICF) framework; also to identify gaps in evidence and service provision to optimise clinical care.

Participants with motor neurone disease (MND) (n=44) and their caregivers (n=37) were recruited from a tertiary MND clinic. Cross‐sectional predominantly qualitative methodology was used to explore the perspectives of MND patients and their caregivers on disability and service gaps. Their disability experience and relevant environmental factors were then mapped onto the ICF framework. Personal factors were described. The impact of MND on caregivers was also described.

There were significant gaps in MND care. In particular, the need for coordinated care by neurology, rehabilitation and palliative care services (“neuropalliative rehabilitation” model) was highlighted. The ICF framework adequately incorporated patient‐and caregiver‐ reported disability in MND.

This is the first review that the authors can identify, that lays the foundation for development of an ICF “Core set” (expert‐selected ICF categories that should be addressed in multidisciplinary care settings) for MND, which could improve consensus of care and communication amongst treating clinicians.