XPAND Trial: Enhancing XP Photoprotection Activities - New Directions (XPAND)
Xeroderma Pigmentosum
About this trial
This is an interventional prevention trial for Xeroderma Pigmentosum focused on measuring Adherence, Behaviour change, Intervention, Photoprotection, Ultraviolet radiation
Eligibility Criteria
Inclusion Criteria:
- A confirmed diagnosis (on the basis of DNA repair study results) of Xeroderma Pigmentosum
- Age >16 years
- Sub-optimal adherence to photoprotection when outdoors, identified by clinical team from data held in medical notes.
For those who participated in our previous research study, sub-optimal adherence will be confirmed from data collected during that study. They will be eligible if they meet any of the following criteria:
- Score <20 on the Adherence to Photoprotection scale (total score is 25 - optimal protection) from a cross-sectional questionnaire completed during our previous research.
- Using photoprotective clothing that have been assessed by the clinical team as anything other than "very good or excellent" on anytime outdoors, recorded on the daily UVR protection diary.
- Having a "resistant" mode of adjustment to photoprotection in the qualitative analysis
Exclusion Criteria:
- Adults diagnosed with cognitive impairment
- Adults with inadequate English to be able to converse with the intervention facilitators
- Adults diagnosed with current clinical depression or anxiety
Sites / Locations
- Guy's St Thomas' NHS Foundation Trust
Arms of the Study
Arm 1
Arm 2
Experimental
No Intervention
2018 XPAND Intervention Arm
2018 XPAND Control Arm
This group will receive the personalised adherence intervention in 2018 in addition to routine clinical care.
This group will receive routine clinical care and act as the control group for the primary objective: To compare the mean daily dose of UVR (SEDs) reaching the face between the intervention group and control group over a 3 week period in June to July (follow-up 1). This group will receive the intervention in 2019, to allow within group change to be assessed.