# 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)

**Authors:** Lauren Matheson, Eila Watson, Tessa Fulton-Lieuw, Saloni Mittal, Piers Gaunt, Julia Sissons, Evaggelia Liaskou, Claire Gaunt, Paul Nankivell, Hisham Mehanna, Jo Brett, Ahmad Abou-Foul

PMC · DOI: 10.1136/bmjopen-2025-099993 · BMJ Open · 2026-02-27

## TL;DR

This study evaluates a new patient-led follow-up approach for head and neck cancer patients, finding it generally acceptable and helpful for self-care and symptom monitoring.

## Contribution

The study introduces and evaluates a patient support package for a risk-stratified follow-up model, focusing on acceptability and self-management behaviors.

## Key findings

- The PIFU intervention with a support package was largely acceptable to both patients and health professionals.
- Patients showed increased engagement in self-care behaviors due to improved knowledge and confidence.
- Some patients with low self-efficacy and fear of recurrence found the intervention less acceptable.

## Abstract

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.

Qualitative interviews conducted 1–2 months after receiving the PIFU support package.

Eight hospital trusts across the UK.

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.

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.

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.

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.

ISRCTN13709798.

## Linked entities

- **Diseases:** head and neck cancer (MONDO:0005627)

## Full-text entities

- **Diseases:** oropharyngeal cancers (MESH:D009959), HNC (MESH:D006258), COM-B (MESH:D006509), swelling (MESH:D004487), anxiety (MESH:D001007), lump (MESH:C536531), salivary glands (MESH:D012466), Cancer (MESH:D009369), aches (MESH:D010146), larynx (MESH:D007818), endometrial cancer (MESH:D016889), sinuses (MESH:D012852), breast, endometrial and prostate cancers (MESH:D011471), metastases (MESH:D009362), oral, laryngeal, hypopharyngeal, nasopharyngeal or oropharyngeal squamous cell carcinoma (MESH:D000077195), cancers of the oral cavity, (MESH:D009062), breast cancer (MESH:D001943), PIFU (MESH:C537491)
- **Chemicals:** PAG (-), alcohol (MESH:D000438)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

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## References

45 references — full list in the complete paper: https://tomesphere.com/paper/PMC12959068/full.md

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Source: https://tomesphere.com/paper/PMC12959068