Issues patients would like to discuss at their review consultation: variation by early and late stage oral, oropharyngeal and laryngeal subsites

Purpose: The patient concerns inventory (PCI) was developed to help patients raise issues/concerns during routine follow-up and to indicate team members they want to see. This paper reports the use of the PCI across various H&N Cancer sub-sites (oral, oropharyngeal and laryngeal) and stages of disease (early and late) and describes the main concerns that patients want to discuss using a cross-sectional survey comprising the PCI with the University of Washington Quality of Life questionnaire. Patients treated for primary H&N squamous cell carcinoma, 1998–2009, were identified from the University Hospital Aintree H&N Cancer database. 447/775 (58 %) patients responded. Fear of recurrence concerns was common to all clinical groups (range 32–67 %). Speech issues were more common with laryngeal tumours, and saliva issues with oropharyngeal tumours (32 % early, 48 % late). Apart from early-stage laryngeal tumours, patients consistently reported issues concerning dental health/teeth and chewing. The median (IQR) number of concerns overall was 4 (2–7), with significant variation (p < 0.001) between clinical groups ranging from 2 (1–6) for early-stage oral to 6 (2–10) for late-stage oropharyngeal and 7 (5–9) late-stage laryngeal. The results indicated that PCI can be readily incorporated into managing HNC patients and supports a holistic multidisciplinary approach to clinic consultations. It accommodates difficult issues such as fear of recurrence and intimacy. Completion of the PCI by patients before consultation can highlight problems and concerns that doctors can target for discussion, thereby streamlining consultations, and ensuring that patient needs are better met, thus creating a more effective service.