Development of the International Classification of Functioning, Disability and Health as a brief head and neck cancer patient questionnaire

WHO has adopted the International Classification of Functioning, Disability and Health (ICF) to assess functioning and disability. A Brief ICF Core Set for head and neck cancer comprises 19 items. This study developed a patient self-completed questionnaire from the items of the brief core set (BCSQ-H&N), compared the BCSQ-H&N questionnaire with the University of Washington v.4 (UW-QOLv4) and compared the BCSQ-H&N results with a clinician-rated evaluation. UW-QOL v4 and BCSQ-H&N were sent to 751 disease-free head and neck cancer patients in April 2008. 376 patients responded to the questionnaire and 25 were interviewed. The percentage reporting significant problems in BCSQ-H&N items ranged between 11% and 43%. The type of problem varied with tumour site. Patients with smaller tumours and patients without radiotherapy reported better outcomes. The BCSQ-H&N correlated well with appropriate items in the UW-QOLv4 especially for functional outcome. There were systematic differences between observer-rated scores and patient self-completed questionnaire responses. Patients suggested additional items for inclusion, namely taste, jaw opening, articulation function, structure of shoulder region, loss of function at the free flap donor site, and intimate relationships. Further validation is required but BCSQ-H&N shows promise as an outcome measure for global use.