Development of the 'ACT now & check-it-out' intervention to support patient-initiated follow up for Head and Neck cancer patients

Abstract

Objective: Current Head and Neck cancer (HNC) follow-up models are considered sub-optimal at detecting recurrences. We describe the development of a patient-initiated follow up (PIFU) trial intervention support package, to support HNC patients to engage in PIFU self-care behaviors.

Methods: An intervention mapping approach, informed by evidence synthesis, theory and stakeholder consultation, guided intervention development. Data sources included a patient survey (n = 144), patient interviews (n = 30), 7 workshops with patients (n = 25) and caregivers (n = 3) and 5 workshops with health professionals (n = 21).

Results: The intervention ('ACT now & check-it-out') comprises an education and support session with a health professional and an app and/or a booklet for patients. The main targets for change in patient self-care behaviors were: assessing what is normal for them; regularly checking for symptom changes; prompt help-seeking for persistent/new symptoms; self-management of fear of recurrence; engaging with the intervention over time.

Conclusions: We have developed an evidence, person and theory-based intervention to support PIFU self-care behaviors in HNC patients.

Practice implications: A trial is underway to assess the effectiveness and cost-effectiveness of the intervention. If successful, this intervention could be adapted for patients with other cancers or diseases, which is important given the recent shift towards PIFU pathways.

Keywords: Behavior change; Co-design; Head and Neck cancer; Intervention development; Intervention mapping; Patient-initiated follow-up.