Status:
COMPLETED
XPAND Trial: Enhancing XP Photoprotection Activities - New Directions
Lead Sponsor:
Guy's and St Thomas' NHS Foundation Trust
Collaborating Sponsors:
King's College London
Newcastle University
Conditions:
Xeroderma Pigmentosum
Eligibility:
All Genders
16+ years
Phase:
NA
Brief 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 fa...
Detailed Description
Xeroderma Pigmentosum (XP) is a rare autosomal recessive inherited condition caused by defective Nucleotide Excision Repair. Patients may develop skin cancers from childhood onwards, ocular damage, an...
Eligibility Criteria
Inclusion
- 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
- 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
Key Trial Info
Start Date :
March 30 2018
Trial Type :
INTERVENTIONAL
Allocation :
ACTUAL
End Date :
January 30 2020
Estimated Enrollment :
15 Patients enrolled
Trial Details
Trial ID
NCT03445052
Start Date
March 30 2018
End Date
January 30 2020
Last Update
July 22 2020
Active Locations (1)
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1
Guy's St Thomas' NHS Foundation Trust
London, United Kingdom, SE1 7EH