Tackling Health Care Disparities: How to Build a Sarcoidosis Center

Main Article Content

Jordana Kron
Aamer Syed
Thomas Iden
Kelly Gwathmey
Kelly Polly
Jessica Randolph
Vikram Brar
Patrick Nana-Sinkam
Kenneth Ellenbogen
Huzaefah Syed

Keywords

sarcoidosis, health care disparities, multidisciplinary

Abstract

Sarcoidosis is a multi-organ system inflammatory disease of unknown etiology that disproportionately affects women and black patients in the United States. In addition, woman and minority patients have worse outcomes. In 2015, sarcoidosis physicians in cardiology, pulmonary medicine and rheumatology joined forces to create a multidisciplinary sarcoidosis at Virginia Commonwealth University.  In 2019, the clinic was recognized as a World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) Center of Excellence. We identify four pillars of a patient-centered sarcoidosis clinic: clinical care, research, teaching, and community outreach. We detail how each of these facets plays a critical role in improving the health of individual patients, creating a strong infrastructure to improve the future of sarcoidosis treatment, and developing community-based resources that can empower patients.  Most importantly, we highlight how a multidisciplinary clinic can help identify and combat healthcare disparities.  

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References

1. Patel N, Kalra R, Doshi R, Arora H, Bajaj NS, Arora G and Arora P. Hospitalization Rates, Prevalence of Cardiovascular Manifestations, and Outcomes Associated With Sarcoidosis in the United States. Journal of the American Heart Association. 2018;7.
2. Hoehn RS, Rieser CJ, Winters S, Stitt L, Hogg ME, Bartlett DL, Lee KK, Paniccia A, Ohr JP, Gorantla VC, Krishnamurthy A, Rhee JC, Bahary N, Olson AC, Burton S, Ellsworth SG, Slivka A, McGrath K, Khalid A, Fasanella K, Chennat J, Brand RE, Das R, Sarkaria R, Singhi AD, Zeh HJ and Zureikat AH. A Pancreatic Cancer Multidisciplinary Clinic Eliminates Socioeconomic Disparities in Treatment and Improves Survival. Annals of surgical oncology. 2021;28:2438-2446.
3. Tang C, Hoffman KE, Allen PK, Gabel M, Schreiber D, Choi S, Chapin BF, Nguyen QN, Davis JW, Corn P, Logothetis C, Ward J, Frank SJ, Navai N, McGuire SE, Anscher M, Pisters L, Pettaway CA, Kumar R, Linson P, Tripuraneni P, Tomaszewski JJ, Patel AB, Augspurger M and Kuban DA. Contemporary prostate cancer treatment choices in multidisciplinary clinics referenced to national trends. Cancer. 2020;126:506-514.
4. Larsson J, Graff P, Bryngelsson IL and Vihlborg P. Sarcoidosis and increased risk of comorbidities and mortality in sweden. Sarcoidosis, vasculitis, and diffuse lung diseases : official journal of WASOG. 2020;37:104-135.
5. Nowiński A, Puścińska E, Goljan A, Peradzynska J, Bednarek M, Korzybski D, Kamiński D, Stokłosa A, Czystowska M, Śliwiński P and Górecka D. The influence of comorbidities on mortality in sarcoidosis: a observational prospective cohort study. The clinical respiratory journal. 2017;11:648-656.
6. Kostorz S, Jastrzębski D, Sikora M, Zebrowska A, Margas A, Stepanik D, Swinder H and Ziora D. Predominance of Comorbidities in the Detriment of Daily Activity in Sarcoidosis Patients. Advances in experimental medicine and biology. 2018;1040:7-12.
7. Jasti S, Afzal M, Kalbfleisch Steven J, Ellenbogen Kenneth A, Bogun Frank M, Chicos Alexandru B, Roukoz H, Zimetbaum Peter J, Murgatroyd F, Torosoff M, Judson M, Platonov Pyotr G, Bhan Adarsh K, Rosenfeld Lynda E, De Lurgio David B, Garlitski Ann C, Hermel Melody H, Vedantham V, Soejima K, Dickfeld Timm-Michael L, Gu X, Puroll E, Crawford Thomas C and Kron J. TRADITIONAL RISK FACTORS INCREASE THE RISK OF POOR OUTCOMES IN PATIENTS WITH CARDIAC SARCOIDOSIS. Journal of the American College of Cardiology. 2022;79:253-253.
8. Acharya NR, Browne EN, Rao N and Mochizuki M. Distinguishing Features of Ocular Sarcoidosis in an International Cohort of Uveitis Patients. Ophthalmology. 2018;125:119-126.
9. Birnie DH, Sauer WH, Bogun F, Cooper JM, Culver DA, Duvernoy CS, Judson MA, Kron J, Mehta D, Cosedis Nielsen J, Patel AR, Ohe T, Raatikainen P and Soejima K. HRS expert consensus statement on the diagnosis and management of arrhythmias associated with cardiac sarcoidosis. Heart rhythm. 2014;11:1305-23.
10. Ekström K, Lehtonen J, Nordenswan HK, Mäyränpää MI, Räisänen-Sokolowski A, Kandolin R, Simonen P, Pietilä-Effati P, Alatalo A, Utriainen S, Rissanen TT, Haataja P, Kokkonen J, Vihinen T, Miettinen H, Kaikkonen K, Kerola T and Kupari M. Sudden death in cardiac sarcoidosis: an analysis of nationwide clinical and cause-of-death registries. European heart journal. 2019;40:3121-3128.
11. Syed H, Ascoli C, Linssen CF, Vagts C, Iden T, Syed A, Kron J, Polly K, Perkins D, Finn PW, Novak R, Drent M, Baughman R and Sweiss NJ. Infection prevention in sarcoidosis: proposal for vaccination and prophylactic therapy. Sarcoidosis, vasculitis, and diffuse lung diseases : official journal of WASOG. 2020;37:87-98.
12. Sheridan R, Martin-Kerry J, Hudson J, Parker A, Bower P and Knapp P. Why do patients take part in research? An overview of systematic reviews of psychosocial barriers and facilitators. Trials. 2020;21:259.
13. Sharp M, Eakin MN and Drent M. Socioeconomic determinants and disparities in sarcoidosis. Current opinion in pulmonary medicine. 2020;26:568-573.
14. Kron J, Crawford T, Mihalick V, Koelling T, Bogun F, Federmann E, Syed H, Syed A, Iden T, Polly K, Lathkar-Pradhan S, Bray K, Ellenbogen Kenneth A, Van Tassell B, Hundley G, Jordan Jennifer H and Abbate A. FEASIBILITY OF ENROLLMENT AND INTERIM SAFETY ANALYSIS OF IL-1 BLOCKADE IN THE MULTIMODALITY ASSESSMENT OF GRANULOMAS IN CARDIAC SARCOIDOSIS - ANAKINRA RANDOMIZED TRIAL (MAGIC-ART). Journal of the American College of Cardiology. 2022;79:33-33.
15. Harper LJ, Love G, Singh R, Smith A, Culver DA and Thornton JD. Barriers to Care among Patients with Sarcoidosis: A Qualitative Study. Annals of the American Thoracic Society. 2021;18:1832-1838.
16. Delisle VC, Gumuchian ST, Rice DB, Levis AW, Kloda LA, Körner A and Thombs BD. Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review. The patient. 2017;10:283-293.
17. Savelkoul M, de Witte LP, Candel MJ, van der Tempel H and van den Borne B. Effects of a coping intervention on patients with rheumatic diseases: results of a randomized controlled trial. Arthritis and rheumatism. 2001;45:69-76.
18. Bartlett YK and Coulson NS. An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient education and counseling. 2011;83:113-9.

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