Relevance and completeness of the International Classification of Functioning, Disability and Health (ICF) Comprehensive Breast Cancer Core Set: The patient perspective in an Australian community cohort

OBJECTIVE: To examine the relevance and completeness of the International Classification of Functioning, Disability and Health (ICF) comprehensive core set for breast cancer using patient reported disability in an Australian cohort. METHOD: Cross-sectional community survey of 85 women following definitive treatment for primary breast cancer. Everyday living problems reported by participants (using open ended questionnaires) were linked with ICF categories using 'linkage' rules. Participants rated 'Activities and Participation' and 'Environmental factors' components of ICF checklist using World Health Organisation qualifiers (0-4). The impact of breast cancer on health areas corresponding to 90 ICF categories in these two components was assessed; and compared with ICF categories within the comprehensive breast cancer core set. RESULTS: Participants identified 16 of 22 categories from 'Activities and Participation' and 11 of 23 categories (barriers) from 'Environmental factors' included in the comprehensive Core Set for BC, as relevant (≥ 10% of the participants). Median number of problems reported was 4 (IQR 1-9) and 1 (IQR 1-4) for 'Activities and Participation' and 'Environmental factors' categories', respectively. Thirteen additional relevant categories relating to mobility, major life areas, community civic life and societal attitudes currently not included in the breast cancer core set, were identified. CONCLUSION: The comprehensive breast cancer core set needs to incorporate issues important to survivors with breast cancer in post-acute settings, prior to its validation from a global perspective.