ESPE Abstracts

Background: Recent studies using data from the International Congenital Adrenal Hyperplasia (CAH) Registry (www.i-cah.org) (1), have provided valuable insight into the determinants of reported acute adrenal insufficiency (AI) related adverse events, demonstrating that the I-CAH Registry can be used as a tool to create clinical benchmarks in CAH care.

Methods: Care quality reports were created for 32 centres who participated in the previous I-CAH study (1), providing information on the quality of data in the Registry and the quality of CAH care, as reflected by sick day episodes and adrenal crises. An online survey was circulated to centre leads to obtain feedback regarding the content and structure of the reports.

Results: Of the 32 centres, 27 (84%) in 18 countries responded to the survey. 22 (82%) agreed that the I-CAH care quality report would lead to an improvement in their centre’s record of entering data in the I-CAH Registry, with 12 (45%) strongly agreeing and 10 (37%) somewhat agreeing; 5 (19%) centres neither agreed nor disagreed and none disagreed. Overall, 19 (70%) agreed that the report would help to improve the care of children with CAH at their centre, with 11 (41%) strongly agreeing; 6 (22%) neither agreed nor disagreed and 2 (7%) disagreed. 26 (96%) agreed that the report was useful to determine how their centre compares to other centres with regards to entering data into the Registry, with 16 (59%) and 10 (37%) strongly agreeing and somewhat agreeing, respectively; 1 (4%) neither agreed nor disagreed. Respondents were asked whether the report was useful to determine how their centre compares to other centres in looking after children with CAH, 21 (77%) agreed that the report was useful in this respect, 13 (48%) strongly agreed; 4 (15%) neither agreed nor disagreed and 2 (7%) somewhat disagreed. 19 (70%) stated that the amount of information in the report was satisfactory, 5 (19%) and 3 (11%) stated that there was too much or too little information, respectively.

Conclusions: The real world data within the I-CAH registry are a valuable resource for studying core clinical outcomes that can be used as benchmarks for improving clinical care. Further work needs to be undertaken to determine whether the exercise of producing regular care quality reports for centres is associated with an improvement in these benchmarks.

1. Ali SR et al. Real-world estimates of AI-related adverse events in children with CAH. J Clin Endocrinol Metab. 2021;106: e192-e203