Version: 1.0.0 | Published: 12 Sep 2026 | Updated: 0 days ago
Summary
DOI Name:
10.1186/ISRCTN73441175
Documentation
Associated Media:
Description:
People living with HIV and anal cancer should get the care that meets all their needs. This does not always happen when services only focus on one health issue. 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 study worked with those affected to find out what matters most and how to improve cancer services, using a co-production method (researchers in equal partnership with stakeholders - people living with HIV who have direct experience of treatment for anal cancer, and their carers) to develop person-centred intervention - designing new models of care and support materials that align research and service development and increase research impact,and ensure this group of patients gets the care that meets all their needs.
A three stage multi-method framework for co-producing and prototyping interventions was developed:
Stage 1: Data collected by evidence review, observation and in-depth interviews with lived experience participants and stakeholders involved in their care and support.
From the resulting description of the experiences of people living with HIV undergoing treatment for anal cancer, a long list of priority needs during and after treatment was produced.
Stage 2, the co-production of the intervention. Three Intervention Development Meetings held (made up of patients and stakeholders) to discuss the findings of Stage 1 - and co-produce appropriate intervention content along with associated resources using an action research cycle.
Stage 3: During the final prototype phase, two separate meetings of clinical staff and patient participants will provide final feedback and comments before the final prototype is developed.
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-90
Follow Up:
Other
Pathway:
Stage 1: Interviews Lived experience participants (People living with HIV, 18
years and above, who have had a diagnosis of anal cancer in the last 5 years.
ALSO those who closely support them such as family members, partners or friends)
first be approached by their clinical team and referred to the research team who
took consent to conduct an interview. The interview included questions about
anal cancer treatment and its impact, coping strategies and support needs and
what could be improved. Stakeholder participants (Healthcare professionals with
perspectives representative of different stages in the patient pathway and
representatives of relevant charities and advocacy groups that provide support
for this group of patients) also interviewed and asked to share their
perspectives on assessing needs and providing information and care for this
group, identifying any areas that they believe require improvement. Intervention
Development Group Meetings - participants recruited from existing Lived
experience participants and Stakeholder participants. The working group met
three times and developed new models of care and support materials.
Provenance
Origin
Purposes:
Study
Sources:
Other
Collection Situations:
Cohort, study, trial
Temporal
Accrual Periodicity:
Static
Start Date:
04 October 2024
End Date:
18 June 2025
Time Lag:
Not applicable
Accessibility
Access
Access Rights:
in progress
Access Service:
Although not required, there is an option to use The Royal Marsden’s Trusted
Research Environment and informatics platform: BRIDgE (Biomedical Research
Informatics Digital Environment). BRIDgE is managed by The Royal Marsden’s
Information Team with support by the NIHR Biomedical Research Centre at The
Royal Marsden and ICR. The aim of the platform is to transform clinical practice
and improve outcomes for patients by enabling researchers to access real-world
cancer data within secure, collaborative, cloud-based workspaces. Learn more by
visiting the BRIDgE site within the NIHR BRC area of The Royal Marsden and ICR
website: https://www.cancerbrc.org/BRIDgE
Access Request Cost:
Depends on type of access. Costing available on application.
Delivery Lead Time:
Variable
Jurisdictions:
UK
Data Controller:
Royal Marsden NHS Foundation Trust
Data Processor:
Royal Marsden NHS Foundation Trust
Usage
Data Use Limitations:
Research-specific restrictions
Data Use Requirements:
- Ethics approval required
- Institution-specific restrictions
- User-specific restriction
- Not for profit use
Resource Creators:
The Royal Marsden NHS Foundation Trust;
The Royal Marsden Cancer Charity;
NIHR Biomedical Research Centre at The Royal Marsden and the ICR
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Conforms To:
LOCAL
Languages:
en
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Participants from single hospital. "Observation date" is date of study closure, actual recruitment was over 20 month period
37
18 June 2025