Global Application of the Assessment of Communication Skills of Paediatric Endocrinology Fellows in the Management of Differences in Sex Development Using the ESPE E-Learning.Org Portal

Abstract

Background: Information sharing in chronic conditions such as disorders of/differences in sex development (DSD) is essential for a comprehensive understanding by parents and patients. We report on a qualitative analysis of communication skills of fellows undergoing training in paediatric endocrinology. Guidelines are created for the assessment of communication between health professionals and individuals with DSD and their parents. Methods: Paediatric endocrinology fellows worldwide were invited to study two interactive online cases (www.espe-elearning.org) and to describe a best practice communication with (i) the parents of a newborn with congenital adrenal hyperplasia and (ii) a young woman with 46,XY gonadal dysgenesis. The replies were analysed regarding completeness, quality, and evidence of empathy. Guidelines for structured assessment of responses were developed by 22 senior paediatric endocrinologists worldwide who assessed 10 selected replies. Consensus of assessors was established and the evaluation guidelines were created. Results: The replies of the fellows showed considerable variation in completeness, quality of wording, and evidence of empathy. Many relevant aspects of competent clinical communication were not mentioned; 15% (case 1) and 17% (case 2) of the replies were considered poor/insufficient. There was also marked variation between 17 senior experts in the application of the guidelines to assess communication skills. The guidelines were then adjusted to a 3-level assessment with empathy as a separate key item to better reflect the qualitative differences in the replies and for simplicity of use by evaluators. Conclusions: E-learning can play an important role in assessing communication skills. A practical tool is provided to assess how information is shared with patients with DSD and their families and should be refined by all stakeholders, notably interdisciplinary health professionals and patient representatives.

Caring for individuals with a difference of sex development (DSD): a Consensus Statement

“…The creation of multidisciplinary teams dedicated to the management of DSD conditions worldwide poses its own challenges. Apart from economical limitations and practical hurdles, training of staff with respect to the acquisition of knowledge, as well as communication skills, is an ongoing endeavour 159 . Examples that outline the role of team members as well as team responsibilities are available 28,160 .…”

Diagnosis of DSD in Children—Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study

“…Research shows that the health provider's communication skills affect parents' decision-making processes [53]. These skills vary wildly, even amongst DSD specialists [54]. While the developed tool for professionals outside the DSD center encompasses tips on how to communicate with the family, no advice on this matter was included in the material for the multi-professional team in the DSD center.…”

Teaching medical students about Kawasaki Disease: The development and evaluation of a digital educational resource

“…While some resources are designed for the purposes of providing quick access to high-yield information such as the Peds Cardiology Handbook app (Rochelson et al 2022), others are targeted towards a wider audience and take the form of written, audio and video content, as discussed in Martiniuk et al’s study (2022). Resources have also been created to provide training in areas of paediatrics that traditionally take place face-to-face, such as paediatric resuscitation (O’Leary 2012) and communication (Kranenburg et al 2017). Both studies found this mode of teaching to be effective in improving knowledge and competence in their respective areas among healthcare professionals.…”