Representation Matters—Diversity in Retina Clinical Trials

Baxter, Sally L.

doi:10.1001/jamaophthalmol.2022.3930

Cited by 7 publications

(3 citation statements)

References 6 publications

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“…Different racial/ethnic groups may respond differently to surgical procedures, and different SES groups may require different practice strategies to achieve the best treatment outcome. Moreover, since minority groups are often disproportionately affected by vision‐threatening conditions, it is important to generate high‐level clinical trial evidence regarding treatment effects and clinical outcomes in these populations 104 . While often overlooked, recognising the disparities in clinical trial and ensuring appropriate recruitment are essential to not only accurate result interpretation, but also the pursuit of health equity 105 …”

Section: Discussionmentioning

confidence: 99%

Social determinants of health and health disparities in glaucoma: A review

Acuff,

Wu,

Varkhedi

et al. 2024

Clinical Exper Ophthalmology

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Social determinants of health and barriers to care can significantly impact patients' access to glaucoma care and treatment, resulting in disparities within disease presentation, progression, management, and treatment outcomes. The widespread adoption of electronic health record systems has allowed researchers and clinicians to further explore these relationships, identifying factors such as race, ethnicity, and socioeconomic status to be risk factors for more severe disease and lower treatment adherence. These disparities highlight potential targets for interventions to combat these disparities and improve overall patient outcomes. This article provides a summary of the available data on health disparities within glaucoma disease presentation, progression, management, treatment, and outcomes and discusses interventions to improve care delivery and outcomes among patients with glaucoma.

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Section: Discussionmentioning

confidence: 99%

Social determinants of health and health disparities in glaucoma: A review

Acuff,

Wu,

Varkhedi

et al. 2024

Clinical Exper Ophthalmology

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“… 37 Although there is a notable lack of underrepresented minorities (URMs) in the ophthalmology workforce (7.7% of ophthalmology residents and 6% of practicing ophthalmologists are URM compared with 33% of the U.S. population), 38 efforts are underway to increase URM representation, including the American Academy of Ophthalmology Minority Ophthalmology Mentorship Program for URM students 39 on a national scale, as well as outreach interventions by individual residency and fellowship programs. 40 …”

Section: Discussionmentioning

confidence: 99%

Racial Disparities in Barriers to Care for Patients With Diabetic Retinopathy in a Nationwide Cohort

Huang

Saseendrakumar

Delavar

et al. 2023

Trans. Vis. Sci. Tech.

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Purpose To ascertain specific barriers of care among patients with diabetic retinopathy (DR) from different racial/ethnic groups. Methods In this cross-sectional study, we included adult participants in the National Institutes of Health All of Us Research Program with DR who answered questions in the Healthcare Access & Utilization survey and Social Determinants of Health (SDoH) survey. Logistic regression was used to study the association between barriers to care and race/ethnicity. Results Our cohort included 885 DR patients who answered the Healthcare Access & Utilization survey and 385 DR patients who responded to the SDoH survey. After adjusting for confounders, Hispanic individuals were more likely than non-Hispanic White individuals to report delaying getting medical care due to not being able to get child care (odds ratio [OR] = 6.57 [95% confidence interval {CI}, 1.67–27.8]). Furthermore, compared to non-Hispanic White individuals, non-Hispanic Black individuals were significantly more likely to report being treated with less respect (OR = 2.62 [95% CI, 1.15–5.80]), treated with less courtesy (OR = 2.51 [95% CI, 1.01–5.92]), and receive poorer service than other people (OR = 2.85 [95% CI, 1.25–6.34]) when they go to a doctor's office or other healthcare provider. Conclusions We found that Hispanic and non-Hispanic Black individuals with DR reported greater delays/barriers to care compared to non-Hispanic White individuals even after controlling for individualized socioeconomic factors. Translational Relevance This study highlights the importance of taking steps to promote health equity, such as increasing access to child care resources and reducing implicit bias among eye care providers, to increase access to care and prevent vision loss from DR.

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“…Unfortunately, the disparities in disease prevalence are also reflected in clinical trial participation, with minority group enrollment in ophthalmology clinical trials across the US not appearing representative of the proportion of the population affected by the diseases being investigated [ 14 , 15 , 16 , 17 ]. Specifically, Black and Hispanic participants have been consistently underrepresented in clinical trials that have resulted in US Food and Drug Administration (FDA) approvals, especially compared to the proportion of individuals affected by the disease under study [ 16 ].…”

Section: Introductionmentioning

confidence: 99%

Demographic and Socioeconomic Factors in Prospective Retina-Focused Clinical Trial Screening and Enrollment

Cao

Patel

Wong

et al. 2023

JPM

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Historically marginalized populations are disproportionately affected by many diseases that commonly affect the retina, yet they have been traditionally underrepresented in prospective clinical trials. This study explores whether this disparity affects the clinical trial enrollment process in the retina field and aims to inform future trial recruitment and enrollment. Age, gender, race, ethnicity, preferred language, insurance status, social security number (SSN) status, and median household income (estimated using street address and zip code) for patients referred to at least one prospective, retina-focused clinical trial at a large, urban, retina-based practice were retrospectively extracted using electronic medical records. Data were collected for the 12-month period from 1 January 2022, through 31 December 2022. Recruitment status was categorized as Enrolled, Declined, Communication (defined as patients who were not contacted, were contacted with no response, were waiting for a follow-up, or were scheduled for screening following a clinical trial referral.), and Did Not Qualify (DNQ). Univariable and multivariable analyses were used to determine significant relationships between the Enrolled and Declined groups. Among the 1477 patients, the mean age was 68.5 years old, 647 (43.9%) were male, 900 (61.7%) were White, 139 (9.5%) were Black, and 275 (18.7%) were Hispanic. The distribution of recruitment status was: 635 (43.0%) Enrolled, 232 (15.7%) Declined, 290 (19.6%) Communication, and 320 (21.7%) DNQ. In comparing socioeconomic factors between the Enrolled and Declined groups, significant odds ratios were observed for age (p < 0.02, odds ratio (OR) = 0.98, 95% confidence interval (CI) [0.97, 1.00]), and between patients who preferred English versus Spanish (p = 0.004, OR = 0.35, 95% CI [0.17, 0.72]. Significant differences between the Enrolled and Declined groups were also observed for age (p < 0.05), ethnicity (p = 0.01), preferred language (p < 0.05), insurance status (p = 0.001), and SSN status (p < 0.001). These factors may contribute to patient participation in retina-focused clinical trials. An awareness of these demographic and socioeconomic disparities may be valuable to consider when attempting to make clinical trial enrollment an equitable process for all patients, and strategies may be useful to help address these challenges.

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Representation Matters—Diversity in Retina Clinical Trials

Cited by 7 publications

References 6 publications

Social determinants of health and health disparities in glaucoma: A review

Social determinants of health and health disparities in glaucoma: A review

Racial Disparities in Barriers to Care for Patients With Diabetic Retinopathy in a Nationwide Cohort

Demographic and Socioeconomic Factors in Prospective Retina-Focused Clinical Trial Screening and Enrollment

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