Health disparities in rheumatoid arthritis

Obreja, E; Pillarisetty, Anjani; Constantinescu, Florina

doi:10.1177/1759720x221137127

Cited by 14 publications

(11 citation statements)

References 57 publications

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“…20,[25][26][27] Our results presented an unreasonable distribution of race/ ethnicity in pivotal trials leading to FDA new drug approval during the past 10 years. It reminds the significance of finding answers to another important problem: if there is a true difference in drug TA B L E 3 *…”

mentioning

confidence: 76%

“…Second, more delicate regulatory policies and guidelines are needed to avoid biases introduced when pursuing the goals of decreasing costs and speeding up enrollments. Last, other approaches to increase the enthusiasm of participating for minority populations include improving the clinical trial experience, eliminating distrust of medical recommendations, fear, and lack of information about clinical trials, and promoting awareness, referral, and access to clinical research opportunities 20,25–27 …”

Section: Discussionmentioning

confidence: 99%

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Characteristics of race/ethnicity in trials leading to anti‐rheumatic drug approval for inflammatory arthritis by the US Food and Drug Administration

Xie,

Liu,

Qin

et al. 2023

Int J of Rheum Dis

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ObjectivePresenting the racial/ethnic representation in clinical trials leading to new approvals of inflammatory arthritis (IA) by the US Food and Drug Administration (FDA) to determine the extent of racial/ethnic disparities.MethodsPivotal trials supporting the approval of new indications from July 2012 to June 2022 were collected from Drugs@FDA, the FDA‐approved drugs database. More details were then identified by searching Pubmed and the National Institutes of Health trials registry. General characteristics of the approved drugs and demographic data for each pivotal trial, especially the race/ethnicity data, were collected. The enrollment profiles of each race/ethnicity were analyzed and then compared with the 2020 US census data.ResultsFrom 2012 to 2022, 34 new approvals were identified based on 59 clinical trials. The Black was consistently underrepresented in all subtypes of IA and drugs, while the White was overrepresented compared to the 2020 US census data.For Asian and Hispanic participants, these pivotal trials presented relatively heterogeneities in enrollments. As for the trends over time, increased involvements of White were still observed in rheumatoid arthritis (RA), psoriatic arthritis, and spondyloarthritis, while increased involvements of Black and decreased enrollments of Asian and Hispanic were only observed in RA.ConclusionsDespite many efforts to eliminate racial/ethnic disparities, the Black was consistently underrepresented in pivotal clinical trials compared to the 2020 US national race/ethnicity distribution data. The White was consistently overrepresented, and the Hispanic presented heterogeneous results. No evident time trend was observed.

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mentioning

confidence: 76%

Section: Discussionmentioning

confidence: 99%

Characteristics of race/ethnicity in trials leading to anti‐rheumatic drug approval for inflammatory arthritis by the US Food and Drug Administration

Xie,

Liu,

Qin

et al. 2023

Int J of Rheum Dis

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“…Historical and present mistreatment of Black people have perpetuated a lack of trust in health care settings, which has been cited as a primary reason for Black patients delaying seeking care and nonadherence to treatment protocols for rheumatic conditions. 4 Furthermore, experiences of discrimination and disparities have been documented for Black patients both in the United States and the United Kingdom, with less access to medications and high-quality care, increased complications from treatments, and worsened outcomes overall compared with White patients in both the United States and the United Kingdom. [5][6][7] According to critical race theory (CRT), race is not a biologically grounded feature of physically distinct subgroups of human beings but is socially constructed and used to oppress and exploit people of color.…”

Section: Introductionmentioning

confidence: 99%

Rheumatoid Arthritis Care Experiences of Black People Living in Canada: A Qualitative Study to Inform Health Service Improvements

Thomas,

Barnabe,

Kleissen

et al. 2024

Arthritis Care & Research

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OBJECTIVEUnderstand experiences related to rheumatoid arthritis (RA) care and propose service‐level strategies to reduce and mitigate inequities for Black people living in Canada.METHODSPurposive and respondent driven sampling was used to recruit participants for qualitative interviews to explore population factors relevant to RA care, and challenges and facilitators for access to healthcare services, medications, and enacting preferred treatment plans. Thematic analysis was conducted using the Braun and Clarke method with inductive and deductive coding, and Critical Race Theory guiding analysis.RESULTSSix women and two men with RA, and two women healthcare professionals expressed how their racial identity contributed to their understanding of RA, their preferences for treatment, and outcome goals. Healthcare access was influenced by financial limitations and racism, exclusion, and discrimination, but also by cultural norms in seeking healthcare and awareness about RA within the Black community. Participants experienced health system fragmentation and were not connected to ancillary supports. Treatment decision‐making was influenced by the legacy of oppression and medical experimentation on Black people, and the predominance of biomedical approaches emphasized by healthcare providers. Holistic and cultural approaches, provided in safe, trauma‐informed care environments, with flexibility in service models, are desired. Partnerships between arthritis care services and Black community organizations are proposed to promote community awareness and knowledge about arthritis and provide support mechanisms for patients within their community.CONCLUSIONOur study highlights unique considerations based on race and ethnicity and provides suggestions for arthritis care to mitigate inequities for Black people living with arthritis.

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“…Patients are often referred to several specialists before seeing a rheumatologist and obtaining a diagnosis. Healthcare disparities have been found to affect many health outcomes including disease severity, long-term outcome, and mortality [10][11][12]. Although access to care and diagnostic delay for several pediatric rheumatic diseases has been studied, there is limited information for juvenile LS and SSc [12][13][14][15][16][17].…”

Section: Introductionmentioning

confidence: 99%

Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers’ perspectives

et al. 2023

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Background Juvenile localized scleroderma (LS) and systemic sclerosis (SSc) are rare pediatric conditions often associated with severe morbidities. Delays in diagnosis are common, increasing the risk for permanent damage and worse outcomes. This study explored caregiver perspectives on barriers they encountered while navigating diagnosis and care for their child’s scleroderma. Methods In this cross-sectional study, caregivers of juvenile LS or SSc patients were recruited from a virtual family scleroderma educational conference and a juvenile scleroderma online interest group. The survey queried respondents about their child’s condition and factors affecting diagnosis and treatment. Results The response rate was 61% (73/120), with 38 parents of LS patients and 31 parents of SSc patients. Most patients were female (80%) and over half were non-Hispanic white (55%). Most families had at least one person with a college education or higher (87%), traveled ≤ 2 h to see their rheumatologist (83%), and had private insurance (75%). Almost half had an annual household income ≥ $100,000 (46%). Families identified the following factors as barriers to care: lack of knowledge about scleroderma in the medical community, finding reliable information about pediatric scleroderma, long wait times/distances for a rheumatology/specialist appointment, balance of school/work and child’s healthcare needs, medication side effects, and identifying effective medications. The barrier most identified as a major problem was the lack of knowledge about juvenile scleroderma in the medical community. Public insurance, household income less than $100,000, and Hispanic ethnicity were associated with specific barriers to care. Lower socioeconomic status was associated with longer travel times to see the rheumatologist/specialist. Diagnosis and systemic treatment initiation occurred at greater than one year from initial presentation for approximately 28% and 36% of patients, respectively. Families of LS patients were commonly given erroneous information about the disease, including on the need and importance of treating active disease with systemic immunosuppressants in patients with deep tissue or rapidly progressive disease. Conclusion Caregivers of children with LS or SSc reported numerous common barriers to the diagnosis, treatment, and ongoing care of juvenile scleroderma. The major problem highlighted was the lack of knowledge of scleroderma within the general medical community. Given that most of the caregiver respondents to the survey had relatively high socioeconomic status, additional studies are needed to reach a broader audience, including caregivers with limited English proficiency, geographical limitations, and financial constraints, to determine if the identified problems are generalizable. Identifying key care barriers will help direct efforts to address needs, reduce disparities in care, and improve patient outcomes.

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Health disparities in rheumatoid arthritis

Cited by 14 publications

References 57 publications

Characteristics of race/ethnicity in trials leading to anti‐rheumatic drug approval for inflammatory arthritis by the US Food and Drug Administration

Characteristics of race/ethnicity in trials leading to anti‐rheumatic drug approval for inflammatory arthritis by the US Food and Drug Administration

Rheumatoid Arthritis Care Experiences of Black People Living in Canada: A Qualitative Study to Inform Health Service Improvements

Barriers to care in juvenile localized and systemic scleroderma: an exploratory survey study of caregivers’ perspectives

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