The 3rd International XLH Symposium took place on the 1st July at University College, Dublin. The final session of the day was ‘Global Health Disparities and Access to Care’, where Oliver Gardiner presented results from the IXLHA International Patient Survey. There were representatives from XLH UK and several UK medical specialists in attendance.
Hosted by the International XLH Alliance in association with ICCBH, the scientific programme was aimed at Global Healthcare Professionals. Sessions covered the latest research, how to optimise the management of XLH, novel therapies and expert speakers with specialist knowledge in dentistry, biomechanics and neurology.
The international patient survey had been carried out to secure evidence for quality of care in XLH, to identify gaps In XLH care and to inform quality improvements to support a planned campaign on best care and key messages.
The online survey was conducted mid-2021, based primarily on the clinical recommendations in Haffner et al., 2019. The survey was available in English, German, Portuguese and Spanish and circulated by member organisations and across social media. This survey is the largest known XLH survey with 350 respondents from 35 countries
Some key findings from the research
In summary, whilst around 40% of patients do feel better informed about XLH & about their current condition & treatment for XLH…
- Of those surveyed, less than 2% of people living with XLH reported that their treatment met all aspects of best care. This was the general consensus across all countries.
- Regarding the preferred sources of obtaining XLH information, 47% received information from their medical professional and 87% would like their medical professional to be the major source of information regarding their disease and influencing a coordinated response across the relevant specialist disciplines.
- Within all those who took the survey, less than 10% received any routine physiotherapy and more than 80% had ever visited a psychologist.
Summing up our attendance at the Symposium, Sarah Mitson commented:
“At XLH UK we want to listen, represent and inform all those we support across the UK. XLH UK is a key member of the International XLH Alliance and we were delighted to be able to support and learn from such an informative and well attended event.”