Dr. Arianne Dessens from the Child & Psychiatry Department at Erasmus MC participated in an Endo-ERN Exchange to facilitate the foundation of an international learning network for disorders/difference of sex development (DSD). Her detailed summary outlines the experience of developing a specialized learning network using the ERN Clinical Exchange opportunity.
“Disorders/differences of sex development (DSD) can be treated well medically, but families will encounter many psychosocial challenges. Providers of psychosocial care are facing challenges to find adaptations in line with recent development in medical knowledge and practices and changed patients’ and parental attitudes and expectations regarding clinical management. Harmonization of psychosocial care and assessment will facilitate systematic evaluation of care and enable studies in specific research questions.
From a survey among providers we learned that collaboration is hampered as providers do not meet in traditional bodies of organization.
With the help of the ERN Exchange Program Anna Strandqvist and I started an international learning network in 2022. The aim of the network is to become an international fellow working group with a focus on improvement of psychosocial care by exchange of knowledge and experiences, harmonization in psychosocial practice and collaboration in research activities.
We organized two digital meetings attended by colleagues from different centers for DSD-care in Europe and the United States. These first meetings were focused on getting to know each other and on surveying expectations for this network. The third meeting will be held the 2nd of December and will be dedicated to decision making and family-centered care, a topic for discussion requested by many colleagues during the first two meetings.
We consulted the founder of the American DSD network to learn from his experiences. We made preparations, designed and wrote texts for a Google site webpage for information regarding network and meetings. For the future we also aim to share presentations, measures, instruments and references on the website.
In the recent ERN Exchange visit we focused on consolidation of the network. After two meetings and one ahead we are better able to give a more precise summary of aims for the network. Now we can organize meetings on requested themes in the near future and for the long term.
The request on training will be served by using the ERN CPMS digital training service. For the upcoming year we outlined a program that will bring fruitful discussions, necessary for future collaboration.
During our exchange weeks we also organized digital meetings with representatives of the healthcare teams for DSD in the UK and USA and invited them to present and host network meetings in the near We discussed common parameters to monitor quality of life in conditions within the DSD spectrum and made preliminary plans to cooperate on future applications and joint research projects.
We shared literature and instruments and reflected on common clinical issues and challenges. Finally, we had meetings with clinicians in pediatric endocrinology and medical psychology, with whom we exchanged clinical experiences and discussed organization of education and profession in our countries.
For the start of this digital network, the ERN Clinical Exchange has been of great value. In between we often had short working meetings after business hours, but significant progress could be made in this one week of focus and intense collaboration.
Face-to-face working on the project is highly motivating and brings more fun in an initiative that is already nice in itself, but takes a lot of extra time and effort.”
- Dessens et al., Understanding the needs of professionals who provide psychosocial care for children and adults with disorders of sex development. BMJ Paediatrics Open Aug 2017, 1 (1) e000132; DOI: 10.1136 ↩