Uncovering patients’ concerns in routine head and neck oncology follow up clinics: an exploratory study

The Patient Concerns Inventory (PCI) is a tool that enables patients to highlight issues they wish to discuss, and helps to uncover concerns that might otherwise be missed. Previous PCI studies have involved direct observation of a consultation by one assessor using a coding method based rigidly on items listed on the inventory. This pilot study explores the feasibility of developing a standardised method of scoring which can be used to evaluate it. We prospectively recruited 40 disease-free patients attending 42 routine outpatient consultations after treatment for head and neck cancer. Before the consultation they completed the University of Washington quality of life questionnaire and the PCI. Nineteen consultations were audio-recorded and transcribed, and 2 assessors used a thematic framework to analyse the content of the consultation to find the number and types of concerns, the professionals involved, and the clinical outcomes. The assessors were in agreement about 80% (65/81) of the audio-recordings. The mean number of items of concern highlighted on the PCI before consultation was 5.95, median (IQR) 4(3–8) in contrast to 6.47, median (IQR) 6(4–9) for those discussed; for involvement of professionals it was 0.74, median (IQR) 0(0–1) in contrast to 2.63, median (IQR) 3(1–4), respectively. We identified 4 new themes for the working thematic framework, which provided a dynamic, standardised, and comprehensive approach based on the observation and responses of those studied. This approach gave an insight into the way the PCI mediates consultations, and how patients do not always understand the support that specific professionals can provide. Overall, patients were satisfied with the consultations.