A systematic review of decision aids for gender affirming therapy.

BACKGROUND

Transgender and gender diverse (TGD) persons considering gender affirming therapy have to make many complex medical decisions, potentially without understanding the associated harms or benefits of hormonal and surgical interventions. Further, clinicians are often unaware of how best to communicate information to persons seeking gender affirming therapy. Patient decision aids have been developed to provide evidence-based information as a way to help people make decisions in collaboration with their clinicians. It is unclear whether such tools exist for persons seeking gender affirming therapy. The objective of our systematic review is to search for and determine the quality of any existing patient decision aids developed for TGD persons considering gender affirming therapy, and the outcomes associated with their use.

METHODS

We adapted a search strategy for databases using two key concepts "decision support intervention/patient decision aid" and "transgender". We also conducted a brief online search of Google and abstracts from relevant conferences to identify any tools not published in the academic literature. Following study selection and data extraction, we used the International Patient Decision Aid Standards instrument (IPDASi) to assess the quality of patient decision aids, and the Standards for UNiversal reporting of patient Decision Aid Evaluations (SUNDAE) checklist to assess the quality of evaluations.

RESULTS

We identified 762 studies; none were identified from Google or conference content. One tool met our inclusion criteria: an online, pre-encounter patient decision aid for transmasculine genital gender-affirming surgery developed in Amsterdam, translated in English and Dutch. The tool met all the IPDASi qualifying criteria, and scored a 17/28 on the certification criteria, and 57/112 on the quality criteria. The efficacy of the patient decision aid has not been evaluated.

CONCLUSIONS

Despite multiple decisions required for gender affirming therapies, only one patient decision aid has been developed for transmasculine genital reconstruction. Further research is required to develop patient decision aids for the multiple decision points along the gender affirming journey.

Informations de copyright

2021 Translational Andrology and Urology. All rights reserved.

Déclaration de conflit d'intérêts

Conflicts of Interest: The authors have completed the ICMJE uniform disclosure form (available at http://dx.doi.org/10.21037/tau-20-1000). The series “Controversies and Considerations of Penile Surgery” was commissioned by the editorial office without any funding or sponsorship. GE has edited and published books that provide royalties on sales by the publishers: the books include Shared Decision Making (Oxford University Press) and Groups (Radcliffe Press). He has in the past provided consultancy for organizations including (I) Emmi Solutions LLC who developed patient decision support tools; (II) National Quality Forum on the certification of decision support tools; (III) Washington State Health Department on the certification of decision support tools; (IV) SCiMentu LLC, Amsterdam (workshops for shared decision making). He is the Founder and Director of &think LLC which owns the registered trademark for Option Grids TM patient decision aids. Founder and director of SHARPNetwork LLC, a provider of training for shared decision making. He provides advice in the domain of shared decision making and patient decision aids to (I) Access Community Health Network, Chicago Federally Qualified Medical Centers); (II) EBSCO Health Option Grids TM patient decision aids; (III) Bind Insurance; (IV) PatientWisdom Inc; (V) abridge AI Inc. GE’s academic interests are focused on shared decision making and coproduction. He owns copyright in measures of shared decision making and care integration namely collaboRATE, integRATE, consideRATE, coopeRATE, toleRATE, Observer OPTION-5 and Observer OPTION-12. The authors have no other conflicts of interest to declare.