Laura J C Kranenburg1,2, Sam T H Reerds2, Martine Cools3, Julie Alderson4, Miriam Muscarella5, Ellie Magrite6, Martijn Kuiper1, Shereen Abdelgaffar7, Antonio Balsamo8, Raja Brauner9, Jean Pierre Chanoine10, Asma Deeb11, Patricia Fechner12, Alina German13, Paul Martin Holterhus14, Anders Juul15, Berenice B Mendonca16, Kristen Neville17, Anna Nordenstrom18, Wilma Oostdijk19, Rodolfo A Rey20, Meilan M Rutter21, Nalini Shah22, Xiaoping Luo23, Kalinka Grijpink24, Stenvert L S Drop2. 1. Department of Rheumatology, Maasstad Ziekenhuis, Rotterdam, the Netherlands. 2. Department of Pediatrics, Division of Pediatric Endocrinology, Sophia Children's Hospital/Erasmus MC, Rotterdam, the Netherlands. 3. Department of Pediatrics, Division of Pediatric Endocrinology, Ghent University, Ghent University Hospital, Ghent, Belgium. 4. Psychological Health Services, University Hospitals Bristol NHS Foundation Trust, Bristol, United Kingdom. 5. USCF School of Medicine, Class of 2019, San Francisco, California, USA. 6. Founder and Trustee, dsdfamilies, Edinburgh, United Kingdom. 7. Department of Pediatrics, Cairo University, Cairo, Egypt. 8. Department of Medical and Surgical Sciences, Division of Pediatric Endocrinology, University Hospital S. Orsola-Malpighi, Bologna, Italy. 9. Fondation Ophtalmologique Adolphe de Rothschild and Université Paris Descartes, Paris, France. 10. Department of Paediatrics, British Columbia Children's Hospital, Vancouver, British Columbia, Canada. 11. Department of Paediatrics, Mafraq Hospital, Abu Dhabi, United Arab Emirates. 12. Department of Pediatrics, University of Washington, Seattle Children's Hospital, Seattle, Washington, USA. 13. Department of Pediatrics, Bnai-Zion Medical Center, Technion, Haifa, Israel. 14. Department of Pediatrics, Division of Pediatric Endocrinology and Diabetes, University Hospital of Schleswig-Holstein, Campus Kiel/Christian Albrecht University of Kiel, Kiel, Germany. 15. Department of Growth and Reproduction, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark. 16. Department of Internal Medicine, Medical School, University of São Paulo, São Paulo, Brazil. 17. Department of Pediatric Endocrinology, Sydney Children's Hospital, Randwick, New South Wales, Australia. 18. Department of Women's and Children's Health, Karolinka Institutet, Stockholm, Sweden. 19. Department of Pediatrics, Leiden University Medical Center, Leiden, the Netherlands. 20. Pediatrics Centro de Investigaciones Endocrinológicas "Dr. César Bergadá" (CEDIE), CONICET-FEI División de Endocrinología, Hospital de Niños Ricardo Gutiérrez, Buenos Aires, Argentina. 21. Division of Endocrinology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, Ohio, USA. 22. Department of Endocrinology, Seth GS Medical College & KEM Hospital, Mumbai, India. 23. Department of Pediatrics, Tongji Hospital, Wuhan, China. 24. Division Education and Student Support, Faculty EEMS, Delft University of Technology, Delft, the Netherlands.
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.
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.
Authors: R Bertalan; A Lucas-Herald; Z Kolesinska; M Berra; Martine Cools; A Balsamo; O Hiort Journal: Orphanet J Rare Dis Date: 2018-12-18 Impact factor: 4.123