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. 2024 Oct 8;22(1):435.
doi: 10.1186/s12916-024-03661-z.

Measuring internalized health-related stigma across health conditions: development and validation of the I-HEARTS Scale

Rebecca L Pearl  1 , Yulin Li  2 , Laurie C Groshon  3 , Marian Hernandez  4 , Danielle Saunders  3 , Miriam Sheynblyum  3 , Kimberly A Driscoll  3 , Joel M Gelfand  5 , Preeti Manavalan  6 , Marjorie Montanez-Wiscovich  7 , Deidre B Pereira  3 , Rebecca M Puhl  8 , Thomas A Wadden  9 , Lori B Waxenberg  3 , Sarah C Westen  3 , Xiang-Yang Lou  2
Affiliations

Measuring internalized health-related stigma across health conditions: development and validation of the I-HEARTS Scale

Rebecca L Pearl et al. BMC Med. .

Abstract

Background: Health-related stigma and its internalization among individuals with chronic health conditions contribute to impaired mental and physical health and quality of life. Research on health-related stigma has been siloed, with disease-specific measures that may not capture the experiences of individuals with multiple health conditions and that prevent comparisons across health conditions. The current study aimed to develop and test a transdiagnostic measure of internalized health-related stigma for use among adults with different physical health conditions.

Methods: An existing measure of internalized mental health stigma was adapted to assess stigma due to chronic physical health conditions following COSMIN procedures, with input from advisory boards of community members living with a range of stigmatized health conditions (obesity, type 1 and type 2 diabetes, skin diseases, HIV, chronic pain, and cancers) and of health professionals who specialized in these conditions. The new Internalized Health-Related Stigma (I-HEARTS) Scale was tested in an online sample of 300 adults with these health conditions, recruited from ResearchMatch. Additional psychosocial measures of mental health and quality of life were administered, and participants provided information about their health conditions and demographic characteristics. Exploratory factor analysis and tests of reliability and validity were conducted to determine the psychometric properties of the I-HEARTS Scale, and k-means clustering and receiver of characteristic curve analysis were used to determine a clinically meaningful cutoff score indicating high levels of internalized stigma.

Results: Factor analysis results yielded a 25-item scale with a 3-factor solution, with subscales of Perceived and Anticipated Stigma, Stereotype Application and Self-Devaluation, and Stigma Resistance. Psychometric properties for internal consistency, inter-item and item-total correlations, and test-retest reliability were strong. Certain demographics (e.g., younger age) and characteristics related to health conditions (e.g., greater symptom severity) were associated with higher levels of internalized stigma. I-HEARTS Scale scores correlated moderately to strongly with related but distinct psychosocial measures, and a cutoff score of 3.40 or higher on the 1-7 rating scale was determined to indicate clinically meaningful levels of internalized stigma.

Conclusions: The I-HEARTS Scale is a reliable and valid measure for the assessment of internalized health-related stigma among adults with varied stigmatized chronic health conditions. STUDY PRE-REGISTRATION: https://osf.io/84c5d/?view_only=87238512f6d6475c87f8f64280a8a15f .

Keywords: Cancer; Chronic disease; Diabetes; HIV; Internalized stigma; Obesity; Pain; Psychometrics; Skin disease.

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Conflict of interest statement

Dr. Gelfand served as a consultant for Abbvie, Artax (DSMB), BMS, Boehringer Ingelheim, Celldex (DSMB), FIDE (which is sponsored by multiple pharmaceutical companies) GSK, Inmagene (DSMB), Lilly, Leo, Moonlake (DSMB), Janssen Biologics, Novartis Corp, UCB (DSMB), Neuroderm (DSMB), and Veolia North America receiving honoraria; receives research grants (to the Trustees of the University of Pennsylvania) from Amgen, BMS, and Pfizer Inc.; and received payment for continuing medical education work related to psoriasis that was supported indirectly pharmaceutical sponsors. Dr. Gelfand is a co-patent holder of resiquimod for treatment of cutaneous T cell lymphoma. Dr Gelfand is a Deputy Editor for the Journal of Investigative Dermatology receiving honoraria from the Society for Investigative Dermatology, is Chief Medical Editor for Healio Dermatology (receiving honoraria), and is a member of the Board of Directors for the International Psoriasis Council and the Medical Dermatology Society, receiving no honoraria. The other authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Mean I-HEARTS Scale scores by health condition
See this image and copyright information in PMC

References

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