XPAND trial: Enhancing XP Photoprotection Activities - New Directions
Research type
Research Study
Full title
The XPAND evaluation of a personalised adherence intervention to improve photoprotection behaviour in adults with Xeroderma Pigmentosum (XP): Randomised Controlled Trial
IRAS ID
236877
Contact name
Robert Sarkany
Contact email
Sponsor organisation
Guy's & St Thomas' Foundation NHS Trust
Clinicaltrials.gov Identifier
Duration of Study in the UK
1 years, 10 months, 31 days
Research summary
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 indoors; 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 belief-based and behaviour change interventions have been used in other chronic conditions.REC name
London - West London & GTAC Research Ethics Committee
REC reference
17/LO/2110
Date of REC Opinion
29 Jan 2018
REC opinion
Further Information Favourable Opinion