HIV-AC: Person-centred care
Research type
Research Study
Full title
Living with HIV and treated for Anal Cancer: an exploratory study using a co-production approach to deliver person-centred care
IRAS ID
333504
Contact name
Emma Hainsworth
Contact email
Sponsor organisation
The Royal Marsden Hospital NHS Foundation Trust
Duration of Study in the UK
1 years, 5 months, 28 days
Research summary
People living with HIV and anal cancer should get the care that meets their needs. This does not always happen when services only focus on one health issue. This new study will work with those affected to find out what matters most and how to improve cancer services. People living with HIV are getting older and are more likely to get other illnesses that need treatment. They face stigma in society. Although anal cancer is rare, HIV increases the risk and it occurs earlier. The incidence of anal cancer in the general population is 1.6 per 100,000 person-years. Among men who have sex with men and who are living with HIV, this is about 89 per 100,000 person-years. Treatment is very effective but can also cause side effects that affect long-term quality of life. These affect the skin, bowel, bladder and sexual function. Cancer services do not always know how bad this impact is for people. This can mean that people suffer, often on their own, where better options could be available.
This NIHR funded study will last 18 months, recruiting from 3 UK sites.
The researchers want to work in equal partnership with people who have direct experience of treatment for anal cancer. This process is called co-production.
A three stage multi-method framework for co-producing interventions has been adopted to include consultation, co-production and prototyping.
The study will start by interviewing patients and then health workers to find out priority needs during and after treatment.
We will then set up a working group to co-produce an intervention to address these needs and improve care. The group will include patients, health workers and other stakeholders. A draft intervention and associated resources will be produced. Further refinement will lead to a pilot intervention which can be tested formally in future research.REC name
West of Scotland REC 5
REC reference
24/WS/0114
Date of REC Opinion
3 Sep 2024
REC opinion
Further Information Favourable Opinion