Stigma As a Barrier to Treatment: Evidence from the National Health and Wellness Survey

OBJECTIVES: Stigmatized conditions are often underdiagnosed and undertreated (e.g., mental health conditions, skin conditions, sexually transmitted diseases, etc.). Disease stigmatization may act as a barrier to proper diagnosis and treatment uptake. We assessed the association between stigmatization, proper diagnosis, and treatment uptake across a variety of stigmatized conditions in a nationally representative real-world dataset.

METHODS: Data from the 2023 US National Health and Wellness Survey, a cross-sectional, nationally representative, general population survey, were used. Disease-specific stigmatization was assessed with a self-report Likert-type three-item composite scale (anchored at 1 “Not at all” and 7 “Very much so”). Associations between self-reported stigmatization and outcomes of interest (i.e., proper diagnosis and treatment uptake) were assessed with Spearman correlations without adjustment for covariates.

RESULTS: Analyses included 75,007 respondents, with a focus on respondents who reported at least 1 of 22 stigmatized health conditions. Stigmatization varied across these 22 conditions, ranging from minor stigmatization reported by those with endometriosis (N=3,437, M=1.7, SD=1.5) to more severe stigmatization reported by those with AIDS (N=347, M=4.6, SD=2.0). As predicted, across conditions the association between stigmatization and proper diagnosis and treatment uptake tended to be negative. However, there was considerable variability in the strength and direction of this association (range for proper diagnosis: ρ=-0.44 [lupus] to ρ=0.14 [phobias]; range for treatment uptake: ρ=-0.26 [multiple sclerosis] to ρ=0.14 [endometriosis]).

CONCLUSIONS: These results suggest that there is meaningful variation in the extent to which health conditions are stigmatized and that stigma may act as a barrier to care. However, the magnitude (and even the direction) of this association varies by condition. As many individuals remain unnecessarily undiagnosed or untreated for their stigmatized condition, future studies may be well-served by quantifying the extent to which stigmatization versus other more commonly assessed factors (e.g., transportation, income, literacy) act as barriers to care.