Health-related quality of life after head and neck cancer: Aboriginal patients’ experiences in South and Central Australia.

Purpose: To identify and address barriers to active and meaningful participation in self-reported health-related quality of life (HRQL) assessment for Aboriginal patients with experience of head and neck cancer (HNC). Methodology: 18 semi-structured interviews based around two global-standard, HNC-specific, HRQL instruments, were conducted with 12 Aboriginal patients with experience of HNC in South and Central Australia. Interviews were transcribed and recurring HRQL issues were identified to form the basis of a novel HRQL assessment (UHRQL-HN). UHRQL-HN was refined through consultation with 30 key informants including healthcare professionals, family and others involved in the care of Aboriginal patients with HNC. UHRQL-HN’s face and content validity, cultural acceptability, utility and relevancy were assessed by 12 key informants and by trialling with five Aboriginal patients with experience of HNC. Results: Cultural disparities and other pragmatic factors adversely affected the usability, reliability and validity of traditional tools and methods for assessing HRQL within this cohort population. UHRQL-HN shows promising face and content validity, cultural acceptability, utility and relevance for both Aboriginal patients with experience of HNC and healthcare professionals. Data yielded utilising UHRQL-HN was of good quality and depth, enabling patients’ HRQL concerns to be identified and addressed in a timely fashion and showed clinical correlation with ECOG status, TNM staging and clinical intervention. Conclusions: Wider trialling and validation of this instrument is recommended as UHRQL-HN shows promise as a useful, clinically relevant tool to assess the HRQL of Aboriginal people with experience of HNC.Thesis (Ph.D.) -- University of Adelaide, School of Medicine, 201