Sarcoidosis Illuminations on Living During COVID-19: Patient Experiences of Diagnosis, Management, and Survival Before and During the Pandemic

Lesley Ann Saketkoo; Kelly Jensen; Dimitra Nikoletou; Jacqui J Newton; Frank J Rivera; Mike Howie; Rodney K Reese; Melanie Goodman; Patricia B Hart; Whitney Bembry; Adam Russell; Isabelle Lian; Matthew R Lammi; Mary Beth Scholand; Anne-Marie Russell

doi:10.1177/23743735221075556

Sarcoidosis Illuminations on Living During COVID-19: Patient Experiences of Diagnosis, Management, and Survival Before and During the Pandemic

J Patient Exp. 2022 Mar 24:9:23743735221075556. doi: 10.1177/23743735221075556. eCollection 2022.

Authors

Lesley Ann Saketkoo^{1

2

3

4}, Kelly Jensen^{4

5}, Dimitra Nikoletou⁶, Jacqui J Newton⁷, Frank J Rivera^{8

9}, Mike Howie^{7

10

11}, Rodney K Reese^{8

9

12}, Melanie Goodman¹³, Patricia B Hart^{14

15}, Whitney Bembry⁴, Adam Russell¹⁶, Isabelle Lian⁴, Matthew R Lammi^{1

2

3}, Mary Beth Scholand¹⁷, Anne-Marie Russell^{18

19}

Affiliations

¹ New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA, USA.
² University Medical Center - Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, New Orleans, LA, USA.
³ Louisiana State University School of Medicine, Section of Pulmonary Medicine, New Orleans, LA, USA.
⁴ Tulane University School of Medicine, New Orleans, LA, USA.
⁵ Oregon Health and Science University School of Medicine, Portland, OR, USA.
⁶ Kingston University, St. George's University of London, London, UK.
⁷ Sarcoidosis UK, London, UK.
⁸ Foundation for Sarcoidosis Research, Chicago, IL, USA.
⁹ National Sarcoidosis Support Group, Long Island, NY, USA.
¹⁰ Burdwood Surgery, Patient Participation Group Chair, Berkshire, UK.
¹¹ CGI UK, Space Defense & Intelligence (Cyber Security Operations) - Senior Security Consultant & Mental Health First Aider, London, UK.
¹² Sarcoidosis Awareness Foundation of Louisiana, Baton Rouge, LA, USA.
¹³ New Orleans Sarcoidosis Support Group, New Orleans, LA, USA.
¹⁴ Sarcoidosis for Beginners National Support Group, New York, NY, USA.
¹⁵ Holistic Approach to Sarcoidosis National Support Group, Certified Health & Wellness Coach, International Association of Professionals, New York, NY, USA.
¹⁶ AR Transcripts and Design, Holmfirth, UK.
¹⁷ University of Utah, Pulmonary Fibrosis Center, Salt Lake City, UT, USA.
¹⁸ University of Exeter, College of Medicine and Health, Exeter, UK.
¹⁹ Royal Devon and Exeter NHS Foundation Trust, Devon, UK.

Abstract

Background: Inspired by intense challenges encountered by patients and clinicians, we examined the experiences of living with sarcoidosis in three of the hardest impacted English-speaking cities during the early COVID-19 pandemic: London, New Orleans, and New York. Methods: A multi-disciplinary, multi-national research team including 6 patient leaders conducted qualitative investigations with analyses rooted in grounded theory. Recruitment occurred by self-referral through patient advocacy groups. Results: A total of 28 people living with sarcoidosis participated. The majority of patients had multi-system and severe sarcoidosis. Dominant themes were consistent across groups with differences expressed in spirituality and government and health systems. Racial, gender, and able-bodied inequity were voiced regarding healthcare access and intervention, societal interactions, and COVID-19 exposure and contraction. Agreement regarding extreme disruption in care and communication created concern for disability and survival. Concerns of COVID-19 exposure triggering new sarcoidosis cases or exacerbating established sarcoidosis were expressed. Pre-COVID-19 impediments in sarcoidosis healthcare delivery, medical knowledge, and societal burdens were intensified during the pandemic. Conversely, living with sarcoidosis cultivated personal and operational preparedness for navigating the practicalities and uncertainties of the pandemic. Optimism prevailed that knowledge of sarcoidosis, respiratory, and multi-organ diseases could provide pathways for COVID-19-related therapy and support; however, remorse was expressed regarding pandemic circumstances to draw long-awaited attention to multi-organ system and respiratory conditions. Conclusion: Participants expressed concepts warranting infrastructural and scientific attention. This framework reflects pre- and intra-pandemic voiced needs in sarcoidosis and may be an agent of sensitization and strategy for other serious health conditions. A global query into sarcoidosis will be undertaken.

Keywords: COVID; chronic; disparities; multi-organ; multi-system; patient-centered; quality of life; sarcoidosis.

Grants and funding

L30 HL129466/HL/NHLBI NIH HHS/United States