Objective: To describe patient-reported disability in primary brain tumours using the International Classification of Functioning, Disability and Health (ICF); and comparison with categories within the core sets for stroke and traumatic brain injury.
Method: A prospective community cross-sectional survey (n = 106) following definitive treatment for primary brain tumours. Problems reported by participants were linked with ICF categories using 'linkage' rules. Participants rated 'activities and participation' and 'environmental factor' components of ICF checklist (using qualifiers); and responses compared with categories within core sets for stroke and traumatic brain injury.
Results: Participant mean age 51 years, median time since diagnosis 2 years; over a third had high grade tumours. Participants considered 44 categories in 'activities and participation' and 16 categories (barriers) in 'environmental factors' as relevant (≥ 10% response) using checklist. Reported problems included: Mobility, Domestic life, General tasks/ demands; and Human made changes to environment. Although the linked categories for brain tumour survivors were similar to those in the core sets for stroke and traumatic brain injury, there was more commonality with the traumatic brain injury core set.
Conclusion: The existing comprehensive stroke and traumatic brain injury core sets incorporate issues relevant to brain tumour survivors in post-acute settings. Findings from this report will assist in defining a future core set for brain tumour; the possibility however, of using a single core set relevant to most long-term neurological conditions needs to be explored.