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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Dr
Robert
Sarkany
robert.sarkany@gstt.nhs.uk
Dr
Jessica
Walburn
jessica.2.walburn@kcl.ac.uk
Other congenital malformations
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
People with Xeroderma Pigmentosum (XP) have a genetic condition which stops their skin repairing damage from Ultraviolet Radiation (UVR). This means they are much more likely to develop potentially fatal skin cancers. The only way to reduce this damage is to rigorously protect the skin, by limiting UVR exposure. This done in a number of ways including: staying indoorsÍľ wearing protective clothing, sunscreen and glasses. People with XP can find it difficult to maintain this level of protection, thus putting themselves at risk.
This research will test whether an intervention designed to enhance photoprotection activities by people with XP is successful. It will use a randomised controlled trial design to compare the amount of UVR reaching the face, between participants receiving the intervention and those receiving standard clinical care. The amount of UVR reaching the face is important, as this is where people with XP develop most cancers.
The intervention involves a tailored conversation with the participant about their adherence to photoprotection. These will be conducted in 7 sessions, either face to face or over the telephone. The content of the conversation will be dependent on the reasons for poor photoprotection for each person. This could be low motivation related to doubts about the need to protect and concerns about protecting (e.g., other people will stare at me if I wear sunglasses when it’s not sunny). Other barriers to protection might be poor planning and lack of routines. The facilitator will provide information tailored to these beliefs (e.g., explanation of how protection reduces risk of skin cancer), explore how they might influence photoprotection and use other standard behaviour change techniques to encourage the development of “good” photoprotection habits (e.g., setting SMART photoprotection goals and action plans). These types of beliefbased and behaviour change interventions have been used in other chronic conditions.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Interventional type: Education or Self-Management;Psychological & Behavioural;Complex Intervention;
You can take part if:
You may not be able to take part if:
1) Adults diagnosed with cognitive impairment 2) Adults with inadequate English to be able to converse with the intervention facilitators 3) Adults diagnosed with current clinical depression or anxiety
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
The study is sponsored by GUY'S AND ST THOMAS' NHS FOUNDATION TRUST and funded by NIHR Central Commissioning Facility (CCF) .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 38782
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
