Patient-reported outcome measures for paediatric gender-affirming care: A systematic review

Abstract

Objectives Patient needs must be comprehensively measured to offer paediatric gender-affirming care in line with clinical standards. Patient-reported outcome measures (PROMs) are self-report tools that measure outcomes deemed to be of importance to patients. PROMs may assess a single outcome or multiple outcomes simultaneously, such as symptoms, functional ability, and quality of life. This study aims to identify PROMs for paediatric gender-affirming care. Methods This systematic review is PRISMA-compliant and was prospectively registered on PROSPERO (CRD42023461959). Six databases were searched: PubMed, Embase, MEDLINE, PsycINFO, CINAHL, and Web of Science from inception to December 16, 2022. Articles meeting the following criteria were included: 1) Original article; 2) Administers a formally-developed PROM; 3) Focuses on gender-affirming care; and 4) Focuses on paediatric populations. Screening and data extraction occurred independently and in duplicate. Data extracted include study/demographic information, and details of PROM used. Results In total, 20 articles were included, representing a total of 5793 paediatric patients undergoing gender-affirming care. Most studies (13, 65%) focused on hormonal gender-affirming care. A total of 38 different PROMs for paediatric gender-affirming care were identified, ranging from 4 to 120 items each (mean 23 items; median 14 items). Most PROMs (n = 22) measured psychological functioning, with eight PROMs measuring quality of life, and three PROMs measuring gender-related concepts (i.e., gender dysphoria/euphoria). Commonly used PROMs include the Utrecht Gender Dysphoria Scale (n = 4; 20%), Body Image Scale (n = 5;25%), and Youth Self-Report (n = 8; 40%). Conclusions A total of 38 PROMs were identified measuring a range of concepts for paediatric gender-affirming care.