Standardized instruments for assessing psychiatric, behavioral, sexual problems, and quality of life in male and female adults with disorders of sex development in Indonesia

Abstract

Disorders of Sex Development (DSD) are a group of congenital medical conditions defined as atypical development of chromosomal, gonadal, and anatomical sex. Psychiatric, behavioral, and gender-associated problems could arise in both male and female adult with DSD. Structured assessments for each variable are needed to properly measure psychiatric and sexual issues and overall quality of life in adults with DSD. This study aims to review structured questionnaire instruments that had been used to assess psychiatric, behavioral, sexual problems, and quality of life in adults with DSD. For psychiatric or behavioral problems, adults with DSD can be assessed with GHQ-28, Brief Symptoms Inventory, Achenbach and Rescorla’s Adult Behavior Checklist, Rosenberg Self-esteem Scale, Mini International Neuropsychiatric Interview plus, Hospital anxiety and depression scale, Body image scale, Adult ADHD self-report scale screener, Short Autism Spectrum Quotient, and coping with DSD questionnaire. For quality of life, assessment could be done with WHOQOL and Short Form-36. Gender role assessment in adults with DSD can be done using Core Gender Identity, Sexual Orientation, and Gender Role Behavior and Utrecht Gender Dysphoria Scale. Both of the apparent male and female DSD patients can be assessed using the instruments available. Recommendations are made based on its function, compliance, validity, reliability, and avaibility of an Indonesian version of the questionnaire. There are a plethora of structured questionnaire tools that have been used to measure psychiatric or behavioral problems, quality of life, and gender roles in adult with DSD, each with its own advantages and disadvantages