Patients concerns inventory highlights perceived needs and concerns in head and neck cancer survivors and its impact on health-related quality of life

Abstract

Currently, the head and neck cancer Patients' Concerns Inventory (HNC-PCI), a holistic, self-reported tool to help patients disclose needs and concerns during consultations, is not organised into domains. We used a Delphi approach to generate domains and applied them to an existing HNC-PCI database to assess association with health-related quality of life (HRQoL). The expert panel comprised 10 experts in head and neck cancer who were selected ad hoc. The HNC-PCI checklist was analysed and fed back to the panel for 3 rounds until consensus was achieved. Five domains were generated (A=Physical and functional; B=Psychological and emotional or spiritual well-being; C=Social care and well-being; D=Treatment-related; and E=Other) and were applied to a database compiled from 674 patients who had completed the PCI on 1276 occasions. On first completing the inventory (median 32 months after treatment) 81% selected items under domain A and 58% under domain B. Fewer items were selected/domain thereafter. Younger patients were more likely to select from domains B and C. Those treated by radiotherapy and adjuvant radiotherapy were more likely to select from domains A and C, respectively. Patients with laryngeal cancer tended to select from domain C, and those with poor HRQoL outcomes were significantly more likely to indicate more items of concern. The items selected under the HNC-PCI domains showed that certain clinical, pathological, and HRQoL factors were associated with specific patterns of needs or concerns.

Keywords: Head neck cancer; Health-related quality of life; Holistic assessments; Patients Concerns Inventory; Unmet needs.