PReS-FINAL-2119: United Kingdom survey of current management of juvenile localised scleroderma

Results 48 clinicians (35 dms, 13 prs) from across the UK responded. At time of survey response, dms reported managing a mean 4.2 CYP with JLS; prs 17.9. 26% dms managed all CYP in collaboration (with a PR, paediatrician, adult rheumatologist or another DM) whilst 31% prs managed all CYP in collaboration (with a DM or paediatrician). 43% of dms and 91% prs reported formal transition arrangements. 9% dms and 69% prs reported involving an adult rheumatologist in transition; 8% prs involved a DM in transition. Medical photography (100%), thermography (67%) and drawing in notes/use of pre-printed body map (both 56%) were the most regularly used mts by prs; photography (81%) drawing in notes (56%) and ultrasound (22%) were most regularly used by dms. Of 4 skin scores, the modified Rodnan skin score was the one clinicians used most frequently. However it was only used regularly by 33% prs and 3% dms. Familiarity, use (frequently or occasionally) and perceived benefit of all other skin scores was low (0-40%). Laser doppler imaging, laser doppler flowmetry and 3.0T MRI were perceived useful by larger proportions (15-70%) of clinicians than reported using them (either occasionally (0-60%) or regularly (0-11%)). Table 1 shows reported use of specific treatments for JLS by clinician group.