Barriers to Care among Patients with Sarcoidosis: A Qualitative Study

Harper, Logan J.; Love, Gabrielle; Singh, Rijuta; Smith, Alastair; Culver, Daniel A.; Thornton, J. Daryl

doi:10.1513/annalsats.202011-1467oc

Cited by 18 publications

(17 citation statements)

References 23 publications

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“…The annual incidence of sarcoidosis varies between 1 and 15 per 100,000 depending on the region. The rates are lowest in Eastern Asian countries (0.5-1 per 100,000) [2,3], higher in North America and Australia (5-10) [4][5][6], and highest in Northern European (Scandinavian) countries (11)(12)(13)(14)(15) [7,8]. In Southern Europe, estimates are lower than in the North (Fig.…”

Section: Epidemiology Of Sarcoidosismentioning

confidence: 93%

“…Similarly, in France, the highest incidence is in individuals of Afro-Caribbean and North African ancestry (16.9 and 9.7 per 100,000 per year, respectively) [10]. We should emphasize that ancestry and race are inadequate proxies for genetic risk and can reflect social inequities in health [11,12]. Most studies have focused on nondiverse popu-lations, limiting our understanding of the role of race.…”

Section: Epidemiology Of Sarcoidosismentioning

confidence: 99%

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Sarcoidosis: Epidemiology and clinical insights

et al. 2023

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Sarcoidosis is characterized by noncaseating granulomas which form in almost any part of the body, primarily in the lungs and/or thoracic lymph nodes. Environmental exposures in genetically susceptible individuals are believed to cause sarcoidosis. There is variation in incidence and prevalence by region and race. Males and females are almost equally affected, although disease peaks at a later age in females than in males. The heterogeneity of presentation and disease course can make diagnosis and treatment challenging. Diagnosis is suggestive in a patient if one or more of the following is present: radiologic signs of sarcoidosis, evidence of systemic involvement, histologically confirmed noncaseating granulomas, sarcoidosis signs in bronchoalveolar lavage fluid (BALF), and low probability or exclusion of other causes of granulomatous inflammation. No sensitive or specific biomarkers for diagnosis and prognosis exist, but there are several that can be used to support clinical decisions, such as serum angiotensin‐converting enzyme levels, human leukocyte antigen types, and CD4 Vα2.3+ T cells in BALF. Corticosteroids remain the mainstay of treatment for symptomatic patients with severely affected or declining organ function. Sarcoidosis is associated with a range of adverse long‐term outcomes and complications, and with great variation in prognosis between populations. New data and technologies have moved sarcoidosis research forward, increasing our understanding of the disease. However, there is still much left to be discovered. The pervading challenge is how to account for patient variability. Future studies should focus on how to optimize current tools and develop new approaches so that treatment and follow‐up can be targeted to individuals with more precision.

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Section: Epidemiology Of Sarcoidosismentioning

confidence: 93%

Section: Epidemiology Of Sarcoidosismentioning

confidence: 99%

Sarcoidosis: Epidemiology and clinical insights

et al. 2023

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“…It is hoped that this will ensure ongoing clinical evaluation to discriminate for the need to introduce alternate steroid-sparing therapy. Lack of vigilance of glucocorticoid use is common and is reported by both patients and researchers to be associated with adverse outcomes especially in non-whites and those of lower socioeconomic status (28,(40)(41)(42)(43)(44)(45). In some sarcoidosis centers glucocorticoids are used as a bridge with concomitant weaning until steroid-sparing agents reach efficacious doses (28).…”

Section: Brief Review Of the Currently Available Medications And Trea...mentioning

confidence: 99%

Sarcoidosis: Updates on therapeutic drug trials and novel treatment approaches

et al. 2022

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Sarcoidosis is a systemic granulomatous inflammatory disease of unknown etiology. It affects the lungs in over 90% of patients yet extra-pulmonary and multi-organ involvement is common. Spontaneous remission of disease occurs commonly, nonetheless, over 50% of patients will require treatment and up to 30% of patients will develop a chronic progressive non-remitting disease with marked pulmonary fibrosis leading to significant morbidity and death. Guidelines outlining an immunosuppressive treatment approach to sarcoidosis were recently published, however, the strength of evidence behind many of the guideline recommended drugs is weak. None of the drugs currently used for the treatment of sarcoidosis have been rigorously studied and prescription of these drugs is often based on off-label” indications informed by experience with other diseases. Indeed, only two medications [prednisone and repository corticotropin (RCI) injection] currently used in the treatment of sarcoidosis are approved by the United States Food and Drug Administration. This situation results in significant reimbursement challenges especially for the more advanced (and often more effective) drugs that are favored for severe and refractory forms of disease causing an over-reliance on corticosteroids known to be associated with significant dose and duration dependent toxicities. This past decade has seen a renewed interest in developing new drugs and exploring novel therapeutic pathways for the treatment of sarcoidosis. Several of these trials are active randomized controlled trials (RCTs) designed to recruit relatively large numbers of patients with a goal to determine the safety, efficacy, and tolerability of these new molecules and therapeutic approaches. While it is an exciting time, it is also necessary to exercise caution. Resources including research dollars and most importantly, patient populations available for trials are limited and thus necessitate that several of the challenges facing drug trials and drug development in sarcoidosis are addressed. This will ensure that currently available resources are judiciously utilized. Our paper reviews the ongoing and anticipated drug trials in sarcoidosis and addresses the challenges facing these and future trials. We also review several recently completed trials and draw lessons that should be applied in future.

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“…16 In an effort to document sarcoidosis patient-reported challenges in receiving care based on low-and high-income zip codes, authors of a study revealed that patients in both income brackets shared similar concerns in their health care management but noted that people residing in the low-income zip code communities more often reported concerns about racially biased discrimination in care as well as income bias. 17 For certain populations, like the Amish community, geographic and technological barriers can play a role in access to health care. Culturally, many in the community choose not to use technology such as cellular phones, computers, or the Internet.…”

Section: Defining Disparitiesmentioning

confidence: 99%

What Rare Disease Patient Advocacy Groups Are Doing to Mitigate the Effects of Disparities

Drell

Silva

Lee

2022

Advances in Pulmonary Hypertension

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Compared with chronic diseases affecting larger populations, rare disease (RD) patients experience great inequities in diagnosis, care, and research. Within RDs, health disparities compound these inequities, as marginalized communities experience additional barriers in accessing clinical care and are often underrepresented from participation in research and clinical trials. For almost 40 years, the National Organization for Rare Disorders (NORD), a RD umbrella organization with over 300 nonprofit organizational members, has led efforts to understand and address inequities for the RD community through innovative research, programming, and collaboration with patients, caregivers, practitioners, and external stakeholders. The beginning of the COVID-19 pandemic in 2020 brought to light longstanding disparities and discrimination for marginalized communities as well as pivotal racial justice movements. These events spurred many RD nonprofit organizations’ interest in increasing outreach and engagement with minoritized communities within RDs and diversifying their organization internally. Building on the increased interest in diversity, equity, and inclusion (DEI), NORD has focused on collecting case studies from within NORD and its member organizations to capture current efforts to improve DEI within the RD ecosystem. One way clinicians can work to mitigate the effects of disparities is to collaborate with RD patient organizations; this article provides a means by which clinicians and researchers can understand some of the challenges RD nonprofit organizations face in bridging disparities and learn about solutions to supporting marginalized patients within their communities. Clinicians are encouraged to join NORD in our policy efforts advocating to ensure patient access to health care providers practicing in a different state vis-à-vis telehealth.

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Barriers to Care among Patients with Sarcoidosis: A Qualitative Study

Cited by 18 publications

References 23 publications

Sarcoidosis: Epidemiology and clinical insights

Sarcoidosis: Epidemiology and clinical insights

Sarcoidosis: Updates on therapeutic drug trials and novel treatment approaches

What Rare Disease Patient Advocacy Groups Are Doing to Mitigate the Effects of Disparities

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