Supplementary Material for: Cross-Cultural Disparities in Psychosocial Research with Individuals with Classical Congenital Adrenal Hyperplasia: A Scoping Review

Objective There are increased calls to address psychosocial needs among individuals with classical Congenital Adrenal Hyperplasia (CAH). However, cross-cultural disparities exist in treatment practices and psychosocial outcomes that impact the generalizability of evidence-based recommendations. To date, this disparity has not been quantified. The present scoping review uses a dual approach to contrast rates of CAH diagnosis to CAH psychosocial research rates across countries.
Methods Six electronic database searches were conducted for: (1) CAH incidence/birth/prevalence rates, and (2) psychosocial research with affected individuals and their families. Two authors reviewed each abstract for inclusion criteria.
Results Sixty-eight and 93 full-text articles, respectively, were evaluated for incidence and country. The countries/regions with the highest reported CAH rates are Thailand, Ghana, and India. Those with the greatest portion of psychosocial publications are United States, Germany, and United Kingdom.
Discussion A discrepancy exists between those countries with the highest CAH rates and those publishing psychosocial research. Specifically, increased rates of CAH are seen in non-Western countries/regions, whereas most psychosocial research arises out of Western Europe and the US. Due to cultural differences between these regions, increased global collaboration is needed to both inform psychosocial research and translate findings in ways that are representative worldwide.