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)

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. TRIAL REGISTRATION NUMBER: ISRCTN13709798.