Sozialpädiatrisches Zentrum (SPZ), Center for Chronically Sick Children, Charité, University Medicine, Berlin, Germany.
Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden.
J Psychosom Res. 2024 Apr;179:111636. doi: 10.1016/j.jpsychores.2024.111636. Epub 2024 Mar 1.
Congenital conditions with atypical development of chromosomal, gonadal, or anatomic sex characteristics are referred to as Differences of Sex Development (DSD). Psychosocial care is recommended to be an integral part of clinical management for individuals with DSD. Few studies have examined the perceived need for, utilization of and the opinions of individuals with DSD regarding psychological support.
This cross-sectional study was part of a European multicentre study in 14 different medical centres in six countries. In total, 1040 individuals with DSD participated in a patient-reported outcome questionnaire asking about experiences and opinions regarding psychological support in DSD care.
A majority of the participants reported that they had not received psychological support, in childhood and/or adolescence (70.6%, n = 692) nor in adulthood (67.9%, n = 661). Need for psychological support in childhood and/or adolescence was reported by 51.3% (n = 503), need for psychological support in adulthood, was reported by 49.5% (n = 482). The majority (80.2%; n = 718) agreed with the statement that people with DSD should always be offered psychological support. According to 78.7% (n = 697) of the participants, parents of children with DSD should always be offered psychological support.
Our findings support the existing consensus that psychological support should be an integral part of DSD care. The discrepancy between received and perceived need for psychological support suggests that individuals with DSD experience barriers to access mental health care services. Psychosocial and psychological services for children, adolescents and adults should therefore be available and offered throughout the lifespan to individuals with DSD.
具有染色体、性腺或解剖性别特征非典型发育的先天性疾病被称为性别发育差异（DSD）。建议将社会心理保健作为 DSD 个体临床管理的一个组成部分。很少有研究检查过 DSD 个体对心理支持的需求、利用情况和意见。
本横断面研究是在六个国家的 14 个不同医疗中心的欧洲多中心研究的一部分。共有 1040 名 DSD 患者参与了一项患者报告的结果调查问卷，询问他们在 DSD 护理中对心理支持的经验和意见。
大多数参与者报告说，他们在儿童期和/或青春期（70.6%，n=692）和成年期（67.9%，n=661）都没有接受过心理支持。51.3%（n=503）报告在儿童期和/或青春期需要心理支持，49.5%（n=482）报告在成年期需要心理支持。大多数人（80.2%，n=718）同意 DSD 患者应始终提供心理支持的说法。根据 78.7%（n=697）的参与者的说法，应始终向 DSD 患儿的父母提供心理支持。
我们的研究结果支持现有的共识，即心理支持应成为 DSD 护理的一个组成部分。接受和感知到的心理支持需求之间的差异表明，DSD 个体在获得精神保健服务方面存在障碍。因此，应在整个生命周期中为 DSD 个体提供社会心理和心理服务。
