Poster Presentation ESA-SRB-ANZBMS 2024 in conjunction with ENSA

Healthcare transition for adolescents and young adults with X-linked hypophosphataemia (#383)

Jessica L Sandy 1 , Craig F Munns 2 3 , Peter Simm 4 , Christine Rodda 5 , Lucy Collins 4 , Christie-Lee Wall 1 , Kerry Myatt 3 , Maria E Craig 1 , Andrew Biggin 1 , Aris Siafarikas 6
  1. The Children's Hospital At Westmead, Annandale, NEW SOUTH WALES, Australia
  2. Paediatrics, University of Queensland, Brisbane, NSW, Australia
  3. Endocrinology and Diabetes, Queensland Children's Hospital, Brisbane, NSW, Australia
  4. Endocrinology and Diabetes, Royal Children's Hospital, Melbourne, VIC, Australia
  5. Dept of Paediatrics, University of Melbourne, Melbourne, VIC, Australia
  6. Dept of Endocrinology and Diabetes, Perth Children's Hospital, Perth, WA, Australia

We aimed to describe current models of HCT care for individuals with XLH via an online questionnaire targeting physicians managing XLH.

 

Eleven surveys were returned from clinicians around Australia and New Zealand; three adult endocrinologists and eight paediatric specialists. Most clinicians saw < 6 patients with XLH. Physicians referred all individuals with XLH to a dentist, but only sometimes referred to physiotherapists, psychologists, and other HCP (Table 1).

 

There was variability in whether clinicians referred to public or private HCP. Main reason for private referrals was patient choice (n=9). Main reasons clinicians referred to public HCP were cost (n=10) and expertise (n=8).

 

Transition services were utilised by 71% (n=8). Only three clinicians (two postcodes) indicated there was a structured transition process for young persons with XLH at their clinic. A minority of clinicians (n=3) used transition specific questionnaires and none used any transition specific tools. Prior to HCT, all paediatric clinicians performed updated biochemical assessment, with only some performing an updated clinical/radiological assessment.

 

Most clinicians (73%, n=8) felt young people should show signs of self-management between 14-16 years. Average age of readiness was thought to be 14-18 years, ideal age at first adult clinician appointment was 14-18 years, and ideal age at last clinic visit with paediatric clinic was 17-19 years.

 

Most clinicians indicated that there were no specific modifications to physical or service delivery models for adolescents and young adults and identified barriers as represented in the Figure. Clinicians identified several other barriers and suggested possible solutions and resources that would be helpful.

 

This research describes current management of adolescents and young adults with XLH and HCT practices. We identified challenges and possible solutions and will use these data to assist in the creation of a local consensus guideline and transition resources specific to XLH.

 

66a6fa20db33e-Figure+HCT+Abstract.jpg