Original Article

Qualitative Parental Perceptions of a Paediatric MDT Clinic for Prader-Willi Syndrome

10.4274/jcrpe.galenos.2021.2021.0010

  • Jennifer S. Cox
  • Claire Semple
  • Rhian Augustus
  • Melanie Wenn
  • Shelley Easter
  • Rebecca Broadbent
  • Dinesh Giri
  • Elanor C. Hinton

Received Date: 10.03.2021 Accepted Date: 14.08.2021 J Clin Res Pediatr Endocrinol 0;0(0):0-0 [e-Pub] PMID: 34538048

Objective:

This preliminary review was conducted to inform the design of a new service to support families with children with Prader-Willi Syndrome. Families were invited to attend a pilot clinic at a hospital outpatient department, comprising of appointments with a multi-disciplinary team.

Method:

Following the clinic, families (n=6) were invited to partake in semi-structured qualitative interviews that were audio-recorded, transcribed and analysed using thematic analysis.

Results:

Families reported that the clinic offered enhanced support within the following categories; integrated care; professional input; signposting to social support (respite and financial); connection with the wider PWS community; and behavioural support.

Conclusion:

This is the first paper that documents the parental perspective of a multi-disciplinary team (MDT) clinic for children with Prader-Willi syndrome. The families felt an MDT led clinic was superior to current care, offering more convenient access to an enhanced service, which would provide integrated and consistent care for their children’s diverse, changing needs.

Keywords: Paediatric, Prader-Willi syndrome, multi-disciplinary team, qualitative