The average life expectancy for XP patients is just 32 years due to cancer-related mortality. The XPAND randomised controlled trial (RCT), recently published, introduces a promising personalised intervention aimed at improving adherence to photoprotection and reducing UVR exposure.
The Need for XPAND
For patients with XP, strict adherence to photoprotection measures is essential but can be difficult to maintain. Standard precautions, such as wearing protective clothing and applying high-SPF sunscreen, are often insufficiently followed, leading to elevated risks of skin cancers. Previous research has shown that one-third of XP patients have suboptimal protection. This lack of adherence is often influenced by psychological factors such as misconceptions about UVR or the emotional and social impacts of restrictive photoprotection.
XPAND (Enhancing XP Photoprotection Activities – New Directions) was designed to address these psychosocial barriers. The intervention is unique in its personalised approach, targeting specific challenges faced by each patient in adhering to photoprotection. It includes seven one-on-one sessions with healthcare professionals, supported by tailored educational materials, text messages, and activity sheets, all underpinned by behaviour change techniques (BCTs).
Key Findings: Reducing UVR Exposure
The XPAND trial involved 16 adults with XP who had previously shown suboptimal photoprotection. The primary goal was to reduce the daily UVR dose to the face, measured using wrist-worn dosimeters and a face protection diary. Results from the trial were striking: patients who received XPAND experienced a significant reduction in their daily UVR exposure compared to those in the control group.
On average, patients in the XPAND group received a UVR dose to the face of just 0.03 standard erythema dose (SED) per day, compared to 0.36 SED in the control group—a reduction of 91%. This effect was sustained three months after the initial intervention, demonstrating the long-term benefits of this personalised approach.
Impact Beyond UVR Exposure
Interestingly, while XPAND significantly reduced UVR exposure, the intervention did not affect other secondary outcomes such as time spent outside, mood, or confidence in photoprotection. However, participants did report higher automaticity (the ability to perform protective behaviours without conscious thought) and improved self-efficacy for applying sunscreen, indicating potential psychological benefits beyond the measured outcomes.
A Cost-Effective Solution
The economic analysis of the XPAND intervention showed it to be a cost-effective strategy for improving photoprotection in XP patients. The intervention was associated with lower treatment costs compared to standard care, and although there was a slight decrease in quality-adjusted life years (QALYs), the reduction in costs suggests that XPAND is a viable option for healthcare systems seeking to improve care for this vulnerable population.
A Path Forward: Expanding XPAND
The success of the XPAND intervention marks a significant milestone in XP care, but its implications extend far beyond this rare disease. The trial's findings suggest that similar personalised interventions could be adapted for other skin cancer patients and individuals with photosensitive conditions like lupus. Future research will aim to explore the broader application of XPAND and its long-term impact on reducing cancer incidence and improving quality of life for XP patients.
At CARE, our mission is to improve adherence to health behaviours in order to reduce disease risk and improve outcomes. The XPAND trial is a prime example of how tailored, evidence-based interventions can make a difference, particularly in rare diseases where standardised care often falls short.
Funding and Collaborators
This study was the final output from a 5 year programme grant awarded to Professor John Weinman and Dr Robert Sarkany by the National Institute for Health Research (NIHR). Earlier studies in the programme had investigated the causes of non-adherence in XP and developed novel ways of assessing UVR exposure. The whole programme was conducted in collaboration with Guy’s and St Thomas’ NHS Foundation Trust, alongside other academic partners in the UK and other countries.
For More Information
If you would like to read more about XPAND or the work of the Centre for Adherence Research and Education (CARE), please visit King’s College London’s CARE page.