Recommendations of patients and families of girls with 46XX congenital adrenal hyperplasia in the United Kingdom regarding the timing of surgery
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In brief
In brief
UK survey of 61 CAH families reveals that those who underwent childhood surgery recommend early intervention (infancy/toddler years) over delaying to adulthood, though selection bias exists. Findings may inform multidisciplinary teams counseling newly diagnosed families on surgical timing for genital reconstruction.
Written by the GCMD Library team from the article.
Abstract
Purpose
The timing of surgery for congenital adrenal hyperplasia (CAH) is contentious. We aimed to survey expert families and patients for their recommendations regarding timing of surgery for a family with a newly diagnosed CAH child.
Methods
A Survey Monkey questionnaire was performed at the 2017 meeting of the CAH support group, “Living with CAH”, and also sent to the members of the CAH support group. The surgical-timing responses were a Likert score from 1 (strongly disagree) to 5 (strongly agree). Data were analysed by Kruskal–Wallis test. p < 0.05 taken as significant.
Results
Of the 61 respondents, 12 were CAH patients, 43 were CAH parents, 3 were physicians, 1 surgeon and 2 others. For all respondents, the Likert score was 3 for infant, toddler and adult timing of surgery (neutral), not statistically significant (ns). For parents and/or children who had surgery (n = 26), the score was 4 (3–5) for infant vs. 4 (3–4) for toddler-years vs. 2 (1–3) for adulthood. This was statistically significant (p = 0.0002). When only patients who had CAH surgery were included, there were only 8 respondents and their scores were: infancy 3 (2–4) vs. toddler-years 4 (2–4) vs. adulthood 1 (1–4), ns.
Conclusion
Expert families and patients in the United Kingdom who have had CAH surgery, recommend surgery in the first few years of life vs. adulthood. There is a selection bias, however this may support MDTs in continuing to discuss surgery as an option in childhood.