Ali Salma R, Macqueen Zoe, Gardner Melissa, Xin Yiqiao, Kyriakou Andreas, Mason Avril, Shaikh M Guftar, Wong Sze C, Sandberg David E, Ahmed S Faisal
1Developmental Endocrinology Research Group, School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK.
2Susan B Meister Child Health Evaluation and Research Center, Department of Pediatrics, University of Michigan Medical School, Ann Arbor, Michigan USA.
Int J Pediatr Endocrinol. 2020;2020:3. doi: 10.1186/s13633-020-0073-x. Epub 2020 Feb 14.
There is a paucity of tools that can be used in routine clinical practice to assess the psychosocial impact of Disorders/Differences of Sex Development (DSD) on parents and children.
To evaluate the use of short Parent Self-Report and Parent Proxy-Report questionnaires that can be used in the outpatient setting.
Previously validated DSD-specific and generic items were combined to develop a Parent Self-Report questionnaire and a Parent Proxy-Report questionnaire for children under 7 years. Of 111 children approached at one tertiary paediatric hospital, the parents of 95 children (86%) with DSD or other Endocrine conditions completed these questionnaires.
Questionnaires took under 10 min to complete and were found to be easy to understand. Compared to reference, fathers of children with DSD reported less stress associated with Clinic Visits ( = 0.02) and managing their child's Medication ( = 0.04). However, parents of children with either DSD or other Endocrine conditions reported more symptoms of Depression ( = 0.03). Mothers of children with DSD reported greater Future Concerns in relation to their child's condition (median SDS - 0.28; range - 2.14, 1.73) than mothers of children with other Endocrine conditions (SDS 1.17; - 2.00, 1.73) ( = 0.02). Similarly, fathers of children with DSD expressed greater Future Concerns (median SDS -1.60; - 4.21, 1.00) than fathers of children with other Endocrine conditions (SDS 0.48; - 2.13, 1.52) ( = 0.04).
DSD was associated with greater parental concerns over the child's future than other Endocrine conditions. Brief parent-report tools in DSD can be routinely used in the outpatient setting to assess and monitor parent and patient needs.
在常规临床实践中，可用于评估性发育障碍/差异（DSD）对父母和孩子心理社会影响的工具匮乏。
评估可在门诊环境中使用的简短父母自评问卷和父母代评问卷的实用性。
将先前验证过的特定于DSD的条目和通用条目相结合，开发了一份父母自评问卷和一份针对7岁以下儿童的父母代评问卷。在一家三级儿科医院接触的111名儿童中，95名（86%）患有DSD或其他内分泌疾病的儿童的父母完成了这些问卷。
问卷完成时间不到10分钟，且易于理解。与对照组相比，DSD患儿的父亲报告称与门诊就诊相关的压力较小（P = 0.02），管理孩子药物方面的压力也较小（P = 0.04）。然而，患有DSD或其他内分泌疾病的儿童的父母报告有更多抑郁症状（P = 0.03）。与患有其他内分泌疾病的儿童的母亲相比，DSD患儿的母亲对孩子病情的未来担忧更大（SDS中位数 -0.28；范围 -2.14，1.73）（P = 0.02）。同样，与患有其他内分泌疾病的儿童的父亲相比，DSD患儿的父亲表达了更大的未来担忧（SDS中位数 -1.60；-4.21，1.00）（P = 0.04）。
与其他内分泌疾病相比，DSD使父母对孩子未来的担忧更大。DSD中的简短父母报告工具可在门诊环境中常规用于评估和监测父母及患者的需求。
