Abstract

Objectives The Patients Concerns Inventory (PCI) is a holistic needs assessment tool to help patients disclose items of concern during routine clinical consultations. The University of Washington Quality of Life (UWQOL) is a validated, HNC-specific HRQOL, which can also screen for patients with significant problems. This study explored associations between PCI outcomes with UWQOL scores. Methods A cross-sectional study of 674 HNC patients (mean age 64 years; 67% men) who completed the HNC-PCI and UWQOL was undertaken. Relationships between HNC-PCI domain selection, UWQOL scores and patient/clinical characteristics were investigated, with statistical significance obtained as appropriate. Results Most (70%, 472) completed HNC-PCI only once (median, 39 months), while 30% (202) completed more than once. On first completing the HNC-PCI (median, 32 months from surgery/diagnosis), items under Physical and functional and Psychological and Emotional well-being/Spiritual domains were selected in 81% and 58%, respectively. When completing a second HNC-PCI, relatively fewer items per domain. Younger patients and those treated by radiotherapy were more likely to select from Psychological and Emotional well-being/Spiritual and Social care/Social well-being domains. Those treated by adjuvant radiotherapy and the larynx subsite were more likely to select from Social care/Social well-being domain. Clear associations were found between four HNC-PCI domains selected with UWQOL subscale scores, and also with the single item UWQOL and overall QOL, where patients in worse condition were more likely to select items within each HNC-PCI domains. Conclusions Emerging trends suggest that certain clinical-pathological factors are associated with specific presentation of perceived needs/concerns. The association between perceived needs with HRQOL outcomes endorses the importance of meeting unmet needs in long-term HNC survivors even though there is a suggestion that the unmet needs may reduce with time.

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