Plan and develop a dedicated lymphoedema self-management intervention for patients who have completed treatment for head and neck cancer

Head and neck lymphoedema (HNL) is an unintended and chronic consequence of head and neck cancer (HNC). This debilitating condition can affect up to 90% of HNC patients in the post-treatment phase.
Despite the high prevalence of HNL, it remains under-recognised and under-treated. This study aimed to plan and develop an evidence-based and theory-driven dedicated HNL self-management intervention, to
promote health-related quality of life for patients with HNC.

Methods
Intervention development was guided by the Person-Based Approach. A systematic review was initially conducted with 12 included studies, followed by qualitative interviews with patients (n=14), family members (n=7) and healthcare professionals (n=39). This empirical data informed guiding principles, providing a blueprint for intervention development. Additionally, iterative input was sought from an advisory group (n=16) with international representation, leading to an intervention prototype which was user-tested using think aloud interviews (n=13) for usability and acceptability.

Results
The study’s empirical data highlighted the need for a dedicated patiencentred intervention on HNL, providing information on causality, chronicity and self-management strategies. Intervention delivery was
required at different time points, with essential facts provided at diagnosis and more detailed information post-treatment. Having relevant, accessible and evidence-based information on HNL could minimise anxiety and distress, as patients often associated their post-treatment symptoms with cancer recurrence. Patients and healthcare professionals identified the important role of
family members in the management of HNL; however, family members reported a lack of necessary knowledge to promote patient-led HNL self-management. An intervention prototype (information sheet
and animated video) was developed and user-tested with evidence of acceptability and usability to address the dearth of HNL self-management interventions.

Conclusions
This novel evidence-based and theory-driven dedicated HNL self-management intervention provides self-management strategies that can be integrated into patients everyday routines, supported by family
and promoted by healthcare professionals. This intervention requires further efficacy evaluation, which is planned.