Endocrine Abstracts

Introduction: Prader Willi syndrome (PWS) is a complex neurodevelopmental genetic condition which is characterised by hyperphagia, endocrine dysfunction, behavioural and psychiatric issues. Current literature recommends a multi-disciplinary approach to PWS management to tackle its multi-faceted manifestations. No previous study has examined the views and satisfaction levels relating to the services provided for children with PWS in Wales.

Methods: Semi-structured interviews were conducted with participants (n=18) with a mean age of children discussed was 7.6 years. The study included a patient satisfaction survey which were audio recorded, transcribed, and then analysed using thematic analysis.

Results: The results of this evaluation demonstrated behaviour and dietary concerns to be the areas participants find the most challenging about management of PWS. Current overall satisfaction scores amongst participants in the study was 6.41/10 with dietary services particularly regarded as lacking in specialist dietician input. 53% of participants were “somewhat satisfied” with the services they were receiving currently. Common themes in the study included a lack of information given at the time of diagnosis and the need for the service to include specialist understanding of the condition. Services were felt to be accessible to families however there was a need for participants to be proactive in their search for support and there were some issues regarding communication and integration of services across different areas of Wales. Emotional and psychological support was commonly referred to as lacking in the services in Wales.

Conclusions: An overarching theme evaluation was the need for the services provided to be tailored towards PWS. The evaluation has highlighted a need for greater awareness and psychosocial support for not only the children with PWS in Wales but the parent and carers receiving the diagnosis and managing the condition. It is recommended that the patient pathway that has been drafted here should be presented amongst health professionals and to establish a PWS support group in Wales overseen by healthcare professionals to ensure that a sense of fear for the future is not created. The evaluation demonstrates the importance of evaluating patient satisfaction with services as a method to make improvements to quality of care.