Observational studyQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026
Understanding determinants of patient-reported outcome measure non-response among transgender and gender diverse individuals: an intersectional multilevel analysis of sociodemographic and structural vulnerabilities.
Observational study in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
purposePatient-reported outcome measures (PROMs) are increasingly integrated into routine clinical care and value-based accountability frameworks, yet systematic non-response may exclude structurally marginalized populations, including transgender and gender diverse (TGD) individuals. This study examined individual- and neighborhood-level predictors of non-response to the PROMIS Global Health (PROMIS-10) questionnaire among TGD individuals using an intersectional multilevel framework.
methodsWe conducted an observational cohort study used electronic health record data from 2015 to 2023 within a large U.S. healthcare system. TGD adults (≥18 years) assigned the PROMIS-10 during clinical encounters were included. PROM non-response was defined as a questionnaire assigned but not completed. Multivariable regression evaluated sociodemographic predictors, and multilevel analysis of individual heterogeneity and discriminatory accuracy quantified variance across intersectional strata. Structural predictors included segregation (Delta Index) and Social Vulnerability Index (SVI).
resultsNon-response at encounter level was high among 7528 TGD patients (85.8%; 95% CI 84.2-87.4). Older age (≥ 36 years; β = 3.3; 95% CI 1.12-5.50) and lower educational attainment (β = 3.23; 95% CI 1.05-5.41) were associated with increased non-response, while insurance type was not associated and ethno-racial identity showed a small, non-significant increase after adjustment. Intersectional strata explained only 1% of variance in non-response, decreasing to 0.3% after adjustment. Higher segregation (Delta Index; β = 10; 95% CI 4.0-17.0) and residence in the highest vulnerability areas (SVI > 0.75; β = 7.9; 95% CI 0.6-15.0) predicted greater non-response.
conclusionsPROM non-response among TGD individuals reflects individual and structural inequities. Equity-centered PROM implementation strategies are needed to prevent systematic exclusion from outcome-based evaluation.
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