Beyond the Numbers: Registry-Based Mortality Outcomes and Structural Challenges in Transgender Health Surveillance
1
Department of Medical Sciences, Clinical Psychiatry, Uppsala University, Uppsala, Sweden
2
Queen Mary University of London, London, United Kingdom
3
Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden
4
Department of Medicine, Karolinska Institute, Solna, Sweden
Popul. Med. 2026;8(Supplement Supplement 1):
ABSTRACT
BACKGROUND:
Transgender and gender-diverse (TGD) individuals experience elevated mortality risk,1 yet national estimates of cause-specific mortality remain limited. Prior studies have focused on narrow subgroups or outdated cohorts, leaving gaps in understanding current mortality disparities. Swedish registry data provide an opportunity to evaluate mortality outcomes in a national, more broadly representative cohort of TGD individuals.
METHODS:
Using a retrospective cohort design, we estimated cause-specific mortality among 10107 TGD individuals in Sweden (2001–2023), matched to non-transgender controls (cisgender) by age and county. We calculated age-standardized mortality rates, mortality rate ratios (MRR), and years of life lost (YLL), stratified by sex assigned at birth. Outcomes: TGD individuals had elevated mortality risk (n=210; all-cause MRR=1.9, 95% CI: 1.6–2.2), particularly from external causes (36.2%). Stratified analyses revealed distinct patterns: transfeminine individuals (assigned male sex at birth) had higher mortality risk from ill-defined causes (MRR vs. cisgender women: 2.4–10.6; vs. cisgender men: 2.7–11.7), while transmasculine individuals (assigned female sex at birth) showed higher mortality risk from respiratory diseases (MRR vs. cisgender women: 1.8–18.4; vs. cisgender men: 1.2–11.3). YLL ranged from 26302–36740 for transfeminine and 11129–44034 for transmasculine individuals compared to controls.
CONCLUSIONS:
These findings underscore persistent health inequities and a need for targeted public health interventions. The high rate of deaths from ill-defined causes suggests potential issues in post-mortem investigation and documentation. Similar patterns in United Kingdom and Dutch samples2,3 indicate that this may reflect broader structural challenges in post-mortem documentation and investigation processes. However, registry and insurance claims-based analyses exclude TGD individuals who have not accessed healthcare related to gender incongruence, likely resulting in underestimated mortality. Given globally recognized barriers to accessing gender-affirming treatments4–6 and their association with suicide risk,7,8 the inclusion of individuals on gender clinic waiting lists and alternative sampling strategies should be explored to improve surveillance and equity.
Transgender and gender-diverse (TGD) individuals experience elevated mortality risk,1 yet national estimates of cause-specific mortality remain limited. Prior studies have focused on narrow subgroups or outdated cohorts, leaving gaps in understanding current mortality disparities. Swedish registry data provide an opportunity to evaluate mortality outcomes in a national, more broadly representative cohort of TGD individuals.
METHODS:
Using a retrospective cohort design, we estimated cause-specific mortality among 10107 TGD individuals in Sweden (2001–2023), matched to non-transgender controls (cisgender) by age and county. We calculated age-standardized mortality rates, mortality rate ratios (MRR), and years of life lost (YLL), stratified by sex assigned at birth. Outcomes: TGD individuals had elevated mortality risk (n=210; all-cause MRR=1.9, 95% CI: 1.6–2.2), particularly from external causes (36.2%). Stratified analyses revealed distinct patterns: transfeminine individuals (assigned male sex at birth) had higher mortality risk from ill-defined causes (MRR vs. cisgender women: 2.4–10.6; vs. cisgender men: 2.7–11.7), while transmasculine individuals (assigned female sex at birth) showed higher mortality risk from respiratory diseases (MRR vs. cisgender women: 1.8–18.4; vs. cisgender men: 1.2–11.3). YLL ranged from 26302–36740 for transfeminine and 11129–44034 for transmasculine individuals compared to controls.
CONCLUSIONS:
These findings underscore persistent health inequities and a need for targeted public health interventions. The high rate of deaths from ill-defined causes suggests potential issues in post-mortem investigation and documentation. Similar patterns in United Kingdom and Dutch samples2,3 indicate that this may reflect broader structural challenges in post-mortem documentation and investigation processes. However, registry and insurance claims-based analyses exclude TGD individuals who have not accessed healthcare related to gender incongruence, likely resulting in underestimated mortality. Given globally recognized barriers to accessing gender-affirming treatments4–6 and their association with suicide risk,7,8 the inclusion of individuals on gender clinic waiting lists and alternative sampling strategies should be explored to improve surveillance and equity.
| eISSN: | 2654-1459 |
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