Living with HIV and treated for Anal Cancer: an exploratory study using a co-production approach to deliver person-centred care

Background Anal cancer incidence in people living with HIV, particularly in men who have sex with men, is more than 50 times higher than in the general population and typically occurs at a younger age. Currently, the NHS is poorly equipped to provide the person-centred care essential for those with HIV and anal cancer.

Services can offer episodic and siloed management that contributes to unnecessarily poor outcomes.

This population face intersecting challenges such as: experience of HIV-related stigma combining with stigma relating to anal cancer; being part of the LGBTQ+ community known to experience higher levels of cancer-related distress; receiving care from more than one speciality and the impact of toxic chemoradiotherapy.

This project will address these unique needs and improve experiences of cancer care by co-producing person-centred interventions with the emphasis on the whole person rather than a narrow focus on a particular condition and symptoms Aims and Objectives This study aims to co-produce a feasible and complex intervention for improving experiences of care and health related quality of life for people living with HIV who receive pelvic chemoradiotherapy for anal cancer.

We will gather perspectives on the experiences of patients and explore priority needs during and after treatment; co-produce intervention content and delivery methods in collaboration with patient and key stakeholders and gain preliminary feedback regarding the acceptability and feasibility of the prototype intervention content and delivery to produce a pilot intervention for future evaluation.

Methods We will follow a three stage multi-method framework for the co-production and prototyping of interventions, extending MRC guidance on complex intervention by providing a practical step-by-step outline of the process.

Stage 1, Evidence review and stakeholder consultation will comprise of stakeholder interviews (up to 20 patient and 15 healthcare professionals); observation of practice and review of relevant evidence.

The outcomes of these methods will feed into Stage 2, Co-production using a core group of researchers, patients and practitioners. A draft intervention, use of the HIV PROM and associated resources will be produced.

Stage 3 Prototyping This intervention will be further reviewed by patient participants, and healthcare professionals who will provide feedback considering successful implementation informed by Normalisation Process Theory. Timelines for Delivery This will be an 18-month project. Initial consultation will take 10 months.

Co-production will take place in a 3-month period, with a further 5 months allocated for prototyping and the writing up and dissemination of findings.

Anticipated impact and Dissemination The pilot interventions that we develop will be shared with community networks and healthcare professionals in order to advance them for further formal evaluation and onward to implementation for patient benefit.

Our community expert co-applicant will lead the development of innovative and engaging ways to share the research with the community of people affected.

We will present the research at conferences and publish in peer reviewed journals and will also develop more engaging methods such as video and podcast. We will write a protocol for the next step, an evaluation study, and look to secure future funding.