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

Area of Science:

• Pediatric Endocrinology
• Genetics
• Developmental Pediatrics

Background:

• Prader-Willi syndrome (PWS) presents complex, multifaceted health and developmental challenges.
• Families of children with PWS often require coordinated and specialized support services.
• Existing care models may not adequately address the diverse and evolving needs of individuals with PWS.

Purpose of the Study:

• To inform the design of a novel service supporting families with children with Prader-Willi syndrome (PWS).
• To evaluate the preliminary effectiveness and parental perception of a pilot multidisciplinary team (MDT) clinic for PWS.
• To gather insights into family-centered care needs for children with PWS.

Main Methods:

• A pilot clinic was established in a hospital outpatient setting, involving a multidisciplinary team (MDT).
• Six families with children diagnosed with PWS participated in semi-structured qualitative interviews post-clinic.
• Thematic analysis was employed to analyze transcribed audio recordings of the interviews.

Main Results:

• Families reported enhanced support across several domains, including integrated care and professional input.
• Key benefits identified were improved signposting to social support (respite, financial) and connection with the PWS community.
• Parents highlighted the clinic's effectiveness in providing behavioral support tailored to PWS.

Conclusions:

• This study presents the first documented parental perspective on an MDT clinic for children with PWS.
• Families perceived the MDT clinic as superior to current care models, offering more convenient access.
• The MDT clinic model is proposed to provide integrated, consistent, and enhanced care for the complex needs of children with PWS.