Laura Kranenburg
Maasstad Ziekenhuis, Netherlands
Title: Global application of the assessment of communication skills of paediatric endocrinology fellows in the management of differences of sex development using the ESPE e-learning.org portal
Biography
Biography: Laura Kranenburg
Abstract
Information-sharing in chronic conditions such as Disorders/Differences of Sex Development (DSD) is essential for a comprehensive understanding by parents and patients. Information sharing in DSD conditions is particularly challenging as the management of individuals with DSD is continually evolving and is also taking place within the context of changing perceptions of sex and gender. Communicating DSD information requires navigating difficult subjects such anticipated stigma, potential future sexual activity or fertility, and awareness of one’s own tendencies to perpetuate own cultural norms that might negatively affect the developing identity of an individual with DSD. We report on a qualitative analysis of communication skills of fellows undergoing training in paediatric endocrinology. Fellows worldwide were invited to study two interactive online cases and to describe communication with the parents of a newborn with CAH and a young woman with 46XY gonadal dysgenesis. The replies were analyzed on completeness, quality and evidence of empathy. Guidelines for structured assessment of responses were developed and evaluation guidelines were created. Fellows’ replies showed considerable variation in completeness, quality of wording and empathy. Many aspects of competent clinical communication were not mentioned such as long-term implications and reassurance. In 15-17% (case 1:2) the overall assessment of the replies was considered poor/insufficient by the experts. Interestingly we noted considerable diversity in the application of the guidelines to assess communication skills among the senior experts. The guidelines were adjusted to a three-level assessment to better reflect the qualitative differences in the replies and for simplicity of use. E-learning can play an important role not only when preparing for face-to-face experiences but also in assessing communication skills of trainees and physician educators. Moreover, a practical tool is provided to assess information sharing with patients with DSD and their families, and should be refined by interdisciplinary health professionals and patient representatives