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

  emma.hainsworth@rmh.nhs.uk

• Sponsor organisation

  The Royal Marsden Hospital NHS Foundation Trust

• Duration of Study in the UK

  1 years, 5 months, 28 days

• Research summary

  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.

  Summary of Results:

  Research aims and background Although anal cancer is rare, people living with HIV are about 19 times more likely to be diagnosed than the general population. Treatment works well but causes side effects that affect long-term quality of life. The purpose of this study was to work with people affected and describe their needs during and after anal cancer treatment. We then wanted to improve care together.

  Methods
  We worked in partnership with people using co-production. The study had 3 stages. In Stage 1 we interviewed people with lived experience and healthcare workers. We analysed the interview data to create a list of priority needs. In Stage 2 we met in smaller groups of patients and healthcare staff. We discussed interview findings. We worked together to create tools to help improve care. In Stage 3 we developed these further

  Key findings
  We interviewed 38 patients and staff. We identified key issues at different stages of treatment. During treatment people described skin soreness, tiredness & disrupted bowels. After treatment people wanted social support. They also wanted help to manage ongoing bowel issues and to talk about their sexual wellbeing.
  In co-production workshops we created tools to help:
  * a questionnaire to allow people to report all their concerns
  * a guide for staff to help talk to patients about sexual wellbeing
  * anal cancer training for HIV peer support workers
  * a first-person story in an animation
  * a web platform to house tools and information

  Dissemination, outputs and impact
  The findings and tools are being shared with community groups and staff in ways fitted to their needs. Details of the work and study outputs can be found on our web platform here: https://track.pstmrk.it/3ts/www.royalmarsden.nhs.uk%2FHIV-AC/NBTI/wJnGAQ/AQ/0ab03bfe-f9bf-4206-a31a-7b341bf90e76/1/GggMqfB30Q

  Patient and public involvement
  This work has been in partnership with people from start to finish

  Conclusion and future plans
  We created person-centred tools to improve care. They will be implemented and evaluated in future work
  

• 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