Planning and developing a self-management lymphoedema intervention resource for patients who have completed treatment for head and neck cancer to support the management of head and neck lymphoedema

Abstract

Introduction
Head and neck lymphoedema has been described as a common, unintended chronic consequence of head and neck cancer treatment (Starmer et al. 2024). Head and neck lymphoedema is estimated to affect up to 90% of head and neck cancer patients (Tyker et al. 2019). There is disparity surrounding effective management of head and neck lymphoedema and this poses a critical issue to address, given the prevalence and potential devastating impact the condition can have on patients’, post-treatment for head and neck cancer (Mullan et al. 2023). Despite a limited number of existing head and neck lymphoedema interventions, this field of research although showing promise is still in its infancy. This research aims to plan and develop a dedicated self-management intervention for head and neck lymphoedema.

Methods
The development of the intervention resource was guided by the Person-Based Approach (PBA) (Yardley et al. 2015). A systematic review of effective head and neck lymphoedema interventions was conducted and published (Mullan et al. 2023) followed by qualitative interviews with patients (n=14) (Mullan et al. 2025a), family members (n=7), and focus groups with healthcare professionals (n=39) (Mullan et al. 2025b). Qualitative interviews and focus groups were thematically analysed. A self-management intervention resource prototype was developed including a head and neck lymphoedema one-page resource and animated video. The head and neck lymphoedema prototype then underwent an iterative user-testing phase using think aloud interviews.

Results
 The systematic review (Mullan et al. 2023) combined with qualitative research findings (Mullan et al. 2025a, 2025b) informed the guiding principles. These were utilised to develop a patient-centred, evidence-based, and theory driven resource to raise awareness and promote adherence of head and neck lymphoedema self-management. Engel’s Biopsychosocial theory (Engel, 1978) and the individual and family self-management theory (Ryan and Sawin, 2009), were used to identify key features that raised the awareness of head and neck lymphoedema, promote strategies to overcome barriers to head and neck lymphoedema self-management, and encourage adherence to head and neck lymphoedema self-management strategies.

Conclusion
Through the implementation of the Person-Based Approach, relevant theories and key stakeholder involvement an acceptable intervention resource to raise the awareness and promote self-management of head and neck lymphoedema for patients living with this chronic condition after completion of head and neck cancer treatment has been developed. In the future, the feasibility and effectiveness of the intervention resource will be tested in clinical practice.

Thesis embargoed until 30 April 2028

Date of Award	Apr 2026
Original language	English
Sponsors	Department for the Economy
Supervisor	Cherith Semple (Supervisor) & Nicole Blackburn (Supervisor)