Background: With increasing incidence of Head and Neck Cancer (HNC) and growing demands on follow-up care, the PETNECK2 study explores a PET-CT guided patient-initiated follow-up (PIFU) pathway supported by a digital self-management intervention. This qualitative study aimed to evaluate the acceptability of the intervention among HNC patients and healthcare professionals, and its impact on self-care behaviours, self-efficacy, and fear of recurrence prior to a phase III trial (NIHR200861)
Methods: Semi-structured interviews were conducted with 25 patients and seven health professionals from eight UK NHS Trusts, following patients' initiation into PIFU one-year post-treatment. Patients received an education session and access to a digital and/or written support package (‘ACT now & check-it-out’) to guide self-examination, symptom monitoring, and help-seeking. Thematic analysis was used to identify key themes.
Results: The intervention was generally well-received. Patients reported increased empowerment and establishment of regular self-checking routines. Most valued the PET-CT reassurance, symptom diary, reminders, and easy access to healthcare teams. However, some reported low confidence in self-examination, especially where education sessions lacked practical demonstrations. Healthcare professionals expressed a need for further training to support patient self-efficacy. Minor protocol deviations and misunderstandings about the monitoring of app entries highlighted areas for improvement in delivery and communication.
Conclusions: PIFU with a structured support package was acceptable and promoted active self-care among HNC patients. Findings informed refinements to intervention materials and delivery for the larger clinical trial. The results support ongoing evaluation in the PETNECK2 trial, which aims to establish effectiveness, cost-efficiency, and broader implementation of potential PET-CT guided patient-initiated follow-up across NHS cancer services.