Promoting engagement in patient-initiated follow-up and self-care behaviours: acceptability of the ‘ACT now & check-it-out’ intervention for head and neck cancer (PETNECK2 study)

Abstract

Objectives Due to increasing incidence of head and neck cancer (HNC) and overwhelming clinical demand on follow-up services, a new risk-stratified pathway, patient-initiated follow-up (PIFU) with a patient support package is being evaluated (PETNECK2 study). We aimed to (a) explore acceptability to both HNC patients and health professionals and the impact on self-management behaviours including self-surveillance and fear of cancer recurrence and (b) conduct intervention optimisation. Design Qualitative interviews conducted 1–2 months after receiving the PIFU support package. Setting Eight hospital trusts across the UK. Participants 25 patients around 1-year post-HNC treatment receiving the PETNECK2 intervention, and 7 health professionals from NHS Trusts involved in recruitment and/or intervention delivery. Intervention All patients received the intervention (PIFU) following a clear PET-CT scan, which included a face-to-face education session with a health professional and a digital app and/or booklet, that aimed to support engagement in PIFU self-care behaviours (including regularly checking for symptom changes; prompt help-seeking; self-management of fear of recurrence). Patients had open access to their hospital team if concerns arose. Results The PIFU intervention with a patient support package was largely acceptable to health professionals and most patients. Engagement in new habitual self-care behaviours was evident in most, influenced by having increased knowledge and confidence regarding these behaviours, provided by key elements of the PIFU support package (eg, demonstration of self-examination). Acceptability appeared lower in a few patients reporting low self-efficacy for self-examination, ongoing challenges with fear of recurrence and concerns over no scheduled appointments. Conclusions Our intervention support package was largely acceptable and promoted patient engagement with PIFU and key self-management behaviours. Findings can usefully inform the design of future PIFU support packages and highlight important considerations for future evaluations of patient acceptability of PIFU pathways. Following intervention optimisation, a UK-wide trial is now underway.