How does leg swelling impact people with multimorbidity at the end of life and what might support them to live and die well?

Background 'Developing leg swelling is lifechanging. I am seen as my limb, not as me. If I sit down you have to pull me up, I can't get upstairs anymore. I've never had any proper treatment.

I am told nothing can be done.' Currently, there is not enough evidence to inform support for people with lower limb swelling and multimorbidity at the end of life. As a consequence, they are left without treatment. The PPIE group for this proposal explained that swelling impacts body image, ability to work, choice of clothing.

It leads to isolation, mental health problems, suicidal thoughts and constant fear of infection. Limited data available suggest a prevalence of lower limb swelling in this group of 51% (14). It is urgent that interventions are developed to help.

Research question How does leg swelling impact people with multimorbidity at the end of life and what might support them to live and die well? Aims and objectives Begin to identify which people with multimorbidity at the end of life develop lower limb swelling. Review the literature for any small-scale interventions in use and any evidence to support them.

Determine how lower limb swelling impacts people, what they think might help and what their goals are.

Where clinicians are using interventions in this group, examine closely how they work, for whom and in what circumstances. Suggest interventions which may help people in this group live and die well. Methods and timelines for delivery A PPIE group has been formed. This will have a rolling membership and will review the design and implementation of all phases.

Phase one (months 0-12) A systematic review is performed of any small-scale interventions being trialled and how outcomes are measured.

Phase two (months 12-30) Qualitative interviews are carried out with 15 people suffering lower limb swelling in multimorbidity at the end of life. Phase three (months 30-48) Five additional case studies are carried out at sites providing interventions. Phase four (months 48-60) An eDephi is performed, bringing together experts from multiple domains.

This will include experts by experience and their carers.

The panel will be asked to agree on interventions which may support people to live and die well with lower limb swelling.

Anticipated impact and dissemination The outputs from this study will be a detailed understanding of people suffering lower limb swelling in multimorbidity at the end of life, how it impacts them, what they think might help and what their goals might be. suggested interventions which may help people to live and die well with swelling.

The study will be disseminated via the RCN International Nursing Research Conference and the International Lymphoedema Framework. It will be published in peer-reviewed journals. Feedback will be provided to the PPIE group and to study participants. Results will be shared with the public, via the Lymphoedema Support Network and Hospice UK.

The study forms the basis for further research following the Medical Research Council Complex Interventions Framework, to develop the suggested interventions.