Finalist
XLH Matters – Driving Improved Care in XLH Through a Hybrid Meeting Approach
Summary of work
X-linked Hypophosphataemia (XLH) is a rare disease. Confidence in managing XLH has improved following the XLH Matters launch in 2021 with the paediatric-focused virtual meeting. However, post-evaluation stressed demand for a live meeting, including adult specialists and addressing educational gaps preventing unnecessary surgery and supporting transition to adult services. A second hybrid meeting engaged paediatric and adult XLH specialists, with an expert EMEA faculty delivering high-quality presentations and interactive workshops. Registrations surpassed expectations, with a 58% increase in attendance from 2021, including 100% in-person attendance (vs registrations). Following the meeting, a 106% increase in attendees that felt ‘confident’ or ‘very confident’ in the steps required to prepare adolescents for transition, 52% increase in rating the value of MDT in managing transition to adult care as ‘high’ or ‘very high’ and 82% increase felt ‘confident’ or ‘very confident’ working with orthopaedic surgeons to optimise patient outcomes. Clinical practice changes have been seen as a direct result of this meeting. Following a case discussion with the faculty, an attendee called their hospital during the meeting to stop an unnecessary surgery. Additionally, 12 HCPs have requested access to treatment for their patients and four HCPs have taken practical steps to support improved transition since the meeting.
Judges’ comments
XLH Matters had a solid situational analysis and good benchmarking. It had clear outputs and outtakes, plus tangible outcomes that relate back. The results were positive on the results and got to those hard-to-reach patients.
