ESPE2015 Poster Presentations Poster Category 1 DSD (11 abstracts)
Current Models of Practice & Professional Development of Clinicians in DSD Centres – Results from an International Survey of Specialist Care for DSD
Andreas Kyriakou a , Arianne B Dessens b , Jillian Bryce a , Ira Haraldsen c , Violeta Iotova d , Anders Juul e , Maciej Krawczynski f , Agneta Nordenskjöld g , Marta Rozas h , Caroline Sanders i , Olaf Hiort j & S Faisal Ahmed a
aDevelopmental Endocrinology Research Group, University of Glasgow, Glasgow, UK; bDepartment of Child and Adolescent Psychiatry, Erasmus MC – Sophia Children’s Hospital, Rotterdam, The Netherlands; cDepartment of Neuropsychiatry and Psychosomatic Medicine, Division of Surgery and Clinical Neuroscience, Oslo University Hospital, Oslo, Norway; dDepartment of Pediatrics and Medical Genetics, Medical University of Varna, Varna, Bulgaria; eDepartment of Growth and Reproduction, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark; fDepartment of Medical Genetics, Poznan University of Medical Science, Poznan, Poland; gPaediatric Surgery, Astrid Lindgren Children Hospital, Karolinska University Hospital, Stockholm, Sweden; hGrApSIA (Grupo de Apoyo al Síndrome de Insensibilidad a los Andrógenos), Barcelona, Spain; iAlder Hey Children’s Hospital NHS Trust and University of Central Lancashire, Liverpool, UK; jDivision of Experimental Paediatric Endocrinology and Diabetes, University of Lübeck, Lübeck, Germany
Background: In the optimal care of children with DSD, it is considered good practice to work within a multidisciplinary team (MDT) and engage in opportunities for professional development.
Method: To explore the current models of MDT practice and the extent of professional development in specialist DSD centres, an international survey of 124 paediatric endocrinologists, identified through DSDnet and the I-DSD Registry, was performed in 2014.
Results: A total of 77/124 (62%) clinicians, in 74 centres, from 38/42 (91%) countries responded to the survey. In 61 (82%) centres, the lead of the team that provided DSD care was a paediatric endocrinologist with the next commonest being a clinical geneticist in 5 (7%) centres. The surveyed clinicians responded that the paediatric specialists routinely involved in the initial evaluation of a newborn were: endocrinologist (98%), surgeon/urologist (95%), radiologist (94%), neonatologist (90%), clinical geneticist (81%) and clinical psychologist (69%). However, a team consisting of paediatric specialists in endocrinology, surgery/urology, clinical psychology, neonatology and nursing was only possible in 29/74 (38%) centres. During the first three months after presentation, a team comprising of paediatric specialists in endocrinology, surgery/urology, clinical psychology, nursing and clinical genetics was only possible in 33/74 (43%) centres. A nationally organised network/plan for managing rare conditions such as DSD was reported to exist in 14/38 (37%) countries. Of the 77 clinicians, 28 (36%) kept a local DSD registry only, 40 (52%) shared their data in a multicentre DSD registry and 9 (12%) did not record any data. Participation in audits/quality improvement exercises in DSD care was reported by 13/74 (18%) centres. Attendance in local, national or international DSD related educational programs was reported by 69, 78 and 82% clinicians respectively.
Conclusion: Although an increasing number of DSD centres have access to specialist staff, the actual delivery and quality of care provided by these staff requires further exploration. Professional development and engagement in activities leading to improved care need further attention.
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