Desired decision-making role and treatment satisfaction among trans people during medical transition: results from the ENIGI follow-up study

BACKGROUND: Shared decision making (SDM) is particularly important in transition-related medical interventions (TRMIs) given the nature of treatment and history of gatekeeping in transgender health care. Yet few studies have investigated trans people's desired decision-making role within TRMI and factors that influence these desires. AIMS: The study investigated trans people's desired level of decision making during medical transition as well as possible sociodemographic predictors and correlations between decision-making desires and satisfaction with treatment. METHODS: Data were collected from a clinical sample from 3 trans health care centers, as part of the larger ENIGI study. The data consisted of 568 trans individuals (60.2% assigned male at birth) 20 to 82 years of age (mean age = 38.58 years) who took part in the study 4 to 6 years after initial clinical contact. Binary logistic regressions were conducted to determine whether independent variables predicted group membership in decision-making role subgroups while a Spearman rank-order correlation was conducted to determine the relationship between desired decision-making involvement and satisfaction with care. OUTCOMES: Main measures were desired decision-making role, satisfaction with treatment, age, education level, country of residence, treatment status, individual treatment progress score (ITPS), gender identity, and sex assigned at birth. RESULTS: The vast majority of participants wanted to make medical decisions themselves. Age, education level, country of residence, treatment status, gender identity, and sex assigned at birth showed no significant effects in desired level of decision making, while the ITPS neared significance. Satisfaction with treatment was overall very high. For participants assigned male at birth, desire for a more active role in decision making was negatively correlated with satisfaction of labia surgery. CLINICAL IMPLICATIONS: A desired decision-making role cannot be predicted based on the trans person's sociodemographic characteristics. More involvement from health professionals addressing medical information and education obligations may be needed when offering surgical construction of labia to individuals assigned male at birth. STRENGTHS AND LIMITATIONS: This study builds on the few existing analyses of desired levels of decision-making role among trans people during transition. It is the first to investigate the role of education level and treatment status/ITPS on the desire of decision-making role. Gender identity and influence of nonbinary identity were not investigated for treatment satisfaction as these items were presented based on sex assigned at birth. CONCLUSION: This study highlights that trans people in 3 European trans health care centers during medical transition desire a more active role in decision making. Satisfaction with treatment received was overall very high.