IDSD2026 Poster Abstracts Poster Abstracts (93 abstracts)
Patient information materials in DSD care: an international clinician survey with focus on androgen insensitivity syndrome
Anna Colding 1,2,3 , S. Faisal Ahmed 4,5 , Minglu Chen 4 , Jillian Bryce 4 , Louise S. Conwell 6 , Justin H. Davies 7 , Alina German 8,9 , Olaf Hiort 10 , Angela Lucas-Herald 5 , Anna Nordenström 11,12 , Marta Righetti 13 , Sabine E. Hannema 14,15,16 & Anne Skakkebæk 17
1Department of Clinical Medicine, Aarhus University, Aarhus, Denmark; 2Department of Molecular Medicine, Aarhus University Hospital, Aarhus, Denmark; 3Department of Endocrinology, Aarhus University Hospital, Aarhus, Denmark; 4Office for Rare Conditions, University of Glasgow, UK; 5Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK; 6Department of Endocrinology and Diabetes, Queensland Children’s Hospital; Greater Brisbane Clinical School, Medical School, Faculty of Health, Medicine and Behavioural Sciences, University of Queensland, Brisbane, Australia; 7Department of Paediatric Endocrinology, University Hospital Southampton NHS Foundation Trust, Southampton, UK; 8Pediatric Endocrinology and Diabetes Unit, HaEmek Medical Center, Afula, Israel; 9Institute of Clinical Sciences, Department of Pediatrics, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden; 10Division of Pediatric Endocrinology and Diabetes, Department of Pediatric and Adolescent Medicine, University of Lübeck, Lübeck, Germany; 11Department of Women’s and Children’s Health, Karolinska Institute, Stockholm, Sweden; 12Division of Paediatrics, Unit for Paediatric Endocrinology and Metabolic Disorders, Karolinska University Hospital, Stockholm, Sweden; 13Italian Association for Androgen Insensitivity Syndrome (IASIA), Rome, Italy; 14Department of Paediatric Endocrinology, Amsterdam UMC location Vrije Universiteit Amsterdam, Amsterdam, the Netherlands; 15Amsterdam Reproduction & Development, Amsterdam, the Netherlands; 16Amsterdam Gastroenterology Endocrinology Metabolism, Amsterdam, the Netherlands; 17Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark. Correspondence to: [email protected]
Background: Limited evidence exists on how androgen insensitivity syndrome (AIS)-specific and differences/disorders of sex development (DSD)-related information materials are used, perceived, and distributed in routine clinical practice. This study explores current practices and perceived gaps in patient information provision from the perspective of healthcare professionals involved in AIS care.
Methods: Centre leads on the I-DSD Registry with registered AIS cases were invited to complete an online survey (n = 70). The questionnaire assessed current use of patient information materials, perceived usefulness and adequacy, and priorities for future development. Responses were obtained from 45 centre leads from 25 countries, mainly paediatric endocrinologists working in university hospitals (67%) and specialised DSD centres (25%).
Results: Only 33% of respondents reported routinely providing AIS specific patient information materials. Among clinicians who provided materials, websites were the most commonly used format (73%), followed by printed brochures (33%) and other formats, including personalised letters and structured educational materials (27%). Videos and mobile applications were rarely used. Two thirds of respondents reported providing written or digital materials consistently or often. Available materials were most frequently rated as moderately useful (73%), while 27% considered them very useful. Overall, 67% of respondents agreed or strongly agreed that there is a lack of adequate AIS specific information materials in clinical practice. Priority areas for improved or updated materials included fertility and reproductive counselling, long term endocrine management, psychosexual development, gender identity, and surgical considerations. Structured information materials were considered particularly beneficial at diagnosis (87%), during adolescence (78%), and during transition to adult care (69%). Age specific materials were rated as very or extremely important by 93% of respondents, with adolescents and young adults identified as the groups with the greatest unmet needs. The majority (96%) of respondents indicated that they would be likely/very likely to use a centralised, structured AIS information platform in clinical practice.
Conclusion: This survey identifies substantial gaps in the availability, adequacy, and use of AIS specific patient information materials and supports the need for a centralised, age specific, culturally sensitive, and clinically integrated information platform to support patients, families, and healthcare professionals, particularly at diagnosis, during adolescence, and throughout transition to adult care.
Volume 118
Article tools
My recent searches
My recently viewed abstracts
Authors
Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
© Bioscientifica 2026 |
Privacy policy |
Cookie settings
BiosciAbstracts
Bioscientifica Abstracts is the gateway to a series of products that provide a permanent, citable record of abstracts for biomedical and life science conferences.
Find out more