BSPED2023 Poster Presentations Adrenal 2 (8 abstracts)
An international study of the association between local health care resources and acute adrenal insufficiency events in children with congenital adrenal hyperplasia
Xanthippi Tseretopoulou 1,2 , Salma R Ali 1,2 , Jillian Bryce 2 , Nadia Amin 3 , Navoda Atapattu 4 , Tania Bachega 5 , Federico Baronio 6 , Niels H Birkebaek 7 , Walter Bonfig 8 , Hedi L Claahsen-Van der Grinten 9 , Martine Cools 10 , Luisa de Sanctis 11 , Liat de Vries 12 , Heba Elsedfy 13 , Christa E Flueck 14 , Antony Fu 15 , Guilherme Guaragna-Filho 16 , Tulay Guran 17 , Ayla Guven 18 , Sabine E Hannema 19 , Violeta Iotova 20 , Daniel Konrad 21 , Nina Lenherr-Taube 21 , Marta Korbonits 22 , Nils P Krone 23 , Ruth Krone 24 , Sofia Leka-Emiris 25 , Corina R Lichiardopol 26 , Andrea Luczay 27 , Renata L Markosyan 28 , Inas Mazen 29 , Tatjana Milenkovic 30 , Klaus Mohnike 31 , Uta Neumann 32 , Marek Niedzela 33 , Anna Nordenstrom 34 , Franziska Phan-Hug 35,36 , Sukran Poyrazoglu 37 , Ursina Probst 38 , Tabitha Randell 39 , Ana Vieites 40 , Gianni Russo 41 , Ajay Thankamony 42 , Erica van den Akker 43 , Judith van Eck 44 , Hetty van der Kamp 45 , Malgorzata G Wasniewska 46 & Faisal S Ahmed 1,2
1Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK; 2Office for Rare Conditions, Royal Hospital for Children & Queen Elizabeth University Hospital, Glasgow, UK; 3Department of Paediatric Endocrinology, Leeds Teaching Hospitals NHS Trust, Leeds, UK; 4Lady Ridgeway Hospital, Colombo, Sri Lanka; 5Unidade de Endocrinologia do Desenvolvimento, Laboratório de Hormônios e Genética Molecular/LIM42, Disciplina de Endocrinologia, Hospital Das Clinicas, Faculdade De Medicina, Universidade de Sao Paulo, São Paulo, Brazil; 6Department Hospital of Woman and Child, Pediatric Unit, Center for Rare Endocrine Conditions (Endo-ERN), IRCCS – S.Orsola-Malpighi University Hospital, 40138 Bologna, Italy; 7Department of Paediatrics, Aarhus University Hospital, Aarhus, Denmark; 8Department of Paediatrics, Technical University Muänchen, D-80804 Munich, Germany and Department of Paediatrics, Klinikum Wels-Grieskirchen, A-4600 Wels, Austria, Munich, Germany; 9Department of Paediatric Endocrinology, Radboud University Medical Centre, Nijmegen Netherlands; 10Department of Paediatric Endocrinology, University Hospital Ghent, B-9000 Ghent University, Ghent, Belgium; 11Regina Margherita Children’s Hospital, Pediatric Endocrinology, AOU Citta della Salute e della Scienza, University of Turin, Turin, Italy; 12Institute for endocrinology and diabetes, Schneider Children Medical Center of Israel, Petah Tiqvah, Israel; 13Department of Pediatrics, Ain Shams University, 11566, Cairo, Egypt; 14Pediatric Endocrinology, Diabetology and Metabolism, Department of Pediatrics and Department of Biomedical Research, Bern University Hospital Inselspital, University of Bern, Bern, Switzerland; 15Department of Paediatrics and Adolescent Medicine, Princess Margaret Hospital, Hong Kong, China; 16Pediatrics Department, School of Medicine, Universidade Federal do Rio Grande do Sul (UFRGS), Porto Alegre, Brazil; 17Marmara University, Department of Pediatric Endocrinology and Diabetes, 34899 Pendik, Istanbul, Turkey; 18University of Health Science, Medical Faculty, Zeynep Kamil Women and Children Hospital, Pediatric Endocrinology Clinic, Istanbul, Turkey; 19Emma Children’s Hospital, Amsterdam UMC location Vrije Universiteit Amsterdam, Pediatric Endocrinology, Amsterdam, Netherlands; 20Department of Paediatrics, Medical University-Varna, Varna, Bulgaria; 21Department of Pediatrics, Division of Endocrinology, University Children’s Hospital Zurich, Zurich, University of Zurich, Switzerland; 22Department of Endocrinology, William Harvey Research Institute, Barts and the London School of Medicine, Queen Mary University of London, London, UK; 23University of Sheffield, Sheffield, UK; 24Birmingham Women’s & Children’s Hospital, Department for Endocrinology & Diabetes, Birmingham, UK; 25Pediatric Endocrinology Department, P&A Kyriakou Children’s Hospital, Athens, Greece; 26Department of Endocrinology, University of Medicine and Pharmacy Craiova, Craiova, Romania; 27Department of Paediatrics, Semmelweis University, Budapest, Hungary; 28Department of Endocrinology, YSMU, Yerevan, Armenia; 29Department of Clinical Genetics, National Research Center, Cairo, Egypt; 30Department of Endocrinology, Mother and Child Health Care Institute of Serbia “Dr Vukan Čupić”, Belgrade, Serbia; 31University of Magdeburg, Magdeburg, Germany; 32Centre for Chronic Sick Children, Institute for Experimental Paediatric Endocrinology, Charité – Universitätsmedizin Berlin, Berlin, Germany; 33Poznan University of Medical Sciences, Poland Institute of Pediatrics, Department of Pediatric Endocrinology and Rheumatology, Poznan, Poland; 34Karolinska University Hospital, Stockholm, Sweden; 35Paediatric Endocrinology, Hospital EHC-Morges, Morges, Switzerland; 36Paediatric Endocrinology, Hospital Valais-Sion, Sion, Switzerland; 37Istanbul Faculty of Medicine, Department of Paediatrics, Paediatric Endocrinology Unit, Istanbul University, Çapa 34093, Istanbul, Turkey; 38Kantonsspital Winterthur, Winterthur, Switzerland; 39Nottingham Children’s Hospital, Nottingham, UK; 40Centro de Investigaciones Endocrinológicas “Dr César Bergadá” (CEDIE), CONICET-FEI-División de Endocrinología, Hospital de Niños Ricardo Gutiérrez, Buenos Aires, Argentina; 41IRCCS Ospedale San Raffaele, Milan, Italy, Milan, Italy; 42Department of Paediatrics, University of Cambridge, Cambridge, UK; 43Erasmus University Medical Center – Sophia Children’s Hospital, dept Pediatric Endocrinology, Rotterdam, The Netherlands; 44Sophia Children’s Hospital, Erasmus Medical Center, 3015 CN Rotterdam, The Netherlands; Leiden University Medical Center, 2300 RC Leiden, The Netherlands, Rotterdam, The Netherlands; 45Wilhelmina Kinderziekenhuis, Division of Pediatric Endocrinology, Utrecht, The Netherlands; 46Pediatric Unit, Department of Human Pathology of Adulthood and Childhood, University of Messina, Messina, Italy
Background: The reported occurrence and management of acute adrenal insufficiency–related adverse events in children vary widely between centres and may depend on available resources.
Methods: Real world data from the I-CAH Registry that included a total of 2478 patient years follow-up on 607 children from 44 centres were studied and their association to the results of a health care survey of these centres that enquired about local resources and clinical management policies was investigated. Resources included written and steroid emergency plans with one point assigned for each resource. Of the 44 centres, 32 were from high income countries (HIC) and 12 from low/middle income (LMIC) countries.
Results: The median reported rate of sick day episodes (SDE) per patient year per centre at HIC and LMIC centres was 0.69 (range 0, 6) and 0.49 (0,3) respectively (P=0.603). Although the availability of resources for management of adverse events was numerically greater at HIC centres versus LMIC with a median score of 4 (1,7) and 3 (2,6) respectively, this did not reach statistical significance (P=0.109). There was no significant association between the availability of resources and the SDE rate in LMIC or HIC centres (P=0.195). The use of double dose hydrocortisone was reported more frequently in LMIC vs HIC centres (67% vs 22%, P=0.005). For management of adrenal crises, the most frequently reported medications included parenteral bolus hydrocortisone (100% in HIC vs 75% in LMIC, P=0.003) and saline solution (97% in HIC vs 83% in LMIC, P=0.112). Prednisolone was reported to be used more often in LMIC (13% in HIC vs 42% in LMIC, P=0.033). A hospital stay of less than 2 days was reported in 50% of HIC centres vs 8% of LMIC centres (P=0.041) while a hospital stay of more than 2 days was reported in 26% of HIC centres vs 70% of LMIC centres (P=0.001).
Conclusions: There is no clear association at centres between the level of resources available and the rate of SDE. However, there are differences in the management of adrenal crises and these may reflect local availability of resources.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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