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Sarcoidosis: An Old but Always Challenging Disease

Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes

New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA 70112, USA
Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, University Medical Center, New Orleans, LA 70112, USA
Section of Pulmonary Medicine, Louisiana State University School of Medicine, New Orleans, LA 70112, USA
Tulane University School of Medicine, Tulane University, New Orleans, LA 70112, USA
College of Medicine and Health, University of Exeter, Devon EX1 2LU, UK
Imperial College Healthcare NHS Foundation Trust, London W2 1NY, UK
Department of Internal Medicine, Oregon Health and Science University, Portland, OR 97239, USA
Respiratory Medicine, Royal Devon and Exeter Hospital NHS Foundation Trust, Exeter EX2 5DW, UK
Department of Neurology, National Jewish Health, Denver, CO 80206, USA
Sarcoidosis UK, China Works, Black Prince Road, London SE1 7SJ, UK
Foundation for Sarcoidosis Research, Chicago, IL 60614, USA
National Sarcoidosis Support Group, Stronger than Sarcoidosis, New York, NY 11727, USA
CGI UK, Space Defense & Intelligence (Cyber Security Operations), London EC3M 3BY, UK
Sarcoidosis Awareness Foundation of Louisiana, Baton Rouge, LA 70812, USA
New Orleans Sarcoidosis Support Group, New Orleans, LA 70112, USA
iHart Wellness Holistic Approach to Sarcoidosis Certified Health & Wellness Coach, International Association of Professionals, New York, NY 11727, USA
Department of Physiotherapy, Gelderse Vallei Hospital, 10, 6716 RP Ede, The Netherlands
ildcare Foundation Research Team, 6711 NR Ede, The Netherlands
Admiraal de Ruyter Hospital (Adrz), 114, 4462 RA Goes, The Netherlands
Department of Medical and Clinical Psychology, Tilburg University, 5037 AB Tilburg, The Netherlands
Cutaneous Sarcoidosis Clinic, Department of Dermatology, University of Pennsylvania, Philadelphia, PA 19104, USA
Division of Pulmonary Medicine, Interstitial Lung Disease Center, University of Utah, Salt Lake City, UT 84132, USA
Department of Medicine, University of Cincinnati Medical Center, Cincinnati, OH 45267, USA
Division of Rheumatology, Department of Medicine, University of Illinois at Chicago, Chicago, IL 60612, USA
Division of Pulmonary Medicine and Critical Care, Albany Medical College, Albany, NY 12208, USA
Interstitial Lung Diseases (ILD) Center of Excellence, Department of Pulmonology, St. Antonius Hospital, Koekoekslaan 1, 3435 CM Nieuwegein, The Netherlands
Department of Pharmacology and Toxicology, Faculty of Health and Life Sciences, Maastricht University, 40, 6229 ER Maastricht, The Netherlands
Authors to whom correspondence should be addressed.
Academic Editor: Claudio Tana
Diagnostics 2021, 11(6), 1089;
Received: 30 April 2021 / Revised: 30 May 2021 / Accepted: 2 June 2021 / Published: 15 June 2021
(This article belongs to the Special Issue Diagnosis and Management of Sarcoidosis)
Health-related quality of life (HRQoL), though rarely considered as a primary endpoint in clinical trials, may be the single outcome reflective of patient priorities when living with a health condition. HRQoL is a multi-dimensional concept that reflects the degree to which a health condition interferes with participation in and fulfillment of important life areas. HRQoL is intended to capture the composite degree of physical, physiologic, psychological, and social impairment resulting from symptom burden, patient-perceived disease severity, and treatment side effects. Diminished HRQoL expectedly correlates to worsening disability and death; but interventions addressing HRQoL are linked to increased survival. Sarcoidosis, being a multi-organ system disease, is associated with a diffuse array of manifestations resulting in multiple symptoms, complications, and medication-related side effects that are linked to reduced HRQoL. Diminished HRQoL in sarcoidosis is related to decreased physical function, pain, significant loss of income, absence from work, and strain on personal relationships. Symptom distress can result clearly from a sarcoidosis manifestation (e.g., ocular pain, breathlessness, cough) but may also be non-specific, such as pain or fatigue. More complex, a single non-specific symptom, e.g., fatigue may be directly sarcoidosis-derived (e.g., inflammatory state, neurologic, hormonal, cardiopulmonary), medication-related (e.g., anemia, sleeplessness, weight gain, sub-clinical infection), or an indirect complication (e.g., sleep apnea, physical deconditioning, depression). Identifying and distinguishing underlying causes of impaired HRQoL provides opportunity for treatment strategies that can greatly impact a patient’s function, well-being, and disease outcomes. Herein, we present a reference manual that describes the current state of knowledge in sarcoidosis-related HRQoL and distinguish between diverse causes of symptom distress and other influences on sarcoidosis-related HRQoL. We provide tools to assess, investigate, and diagnose compromised HRQoL and its influencers. Strategies to address modifiable HRQoL factors through palliation of symptoms and methods to improve the sarcoidosis health profile are outlined; as well as a proposed research agenda in sarcoidosis-related HRQoL. View Full-Text
Keywords: sarcoidosis; quality of life; symptom burden; symptom distress; shared decision making; patient-centeredness; patient centered care; mindfulness; exercise; physical activity sarcoidosis; quality of life; symptom burden; symptom distress; shared decision making; patient-centeredness; patient centered care; mindfulness; exercise; physical activity
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MDPI and ACS Style

Saketkoo, L.A.; Russell, A.-M.; Jensen, K.; Mandizha, J.; Tavee, J.; Newton, J.; Rivera, F.; Howie, M.; Reese, R.; Goodman, M.; Hart, P.; Strookappe, B.; De Vries, J.; Rosenbach, M.; Scholand, M.B.; Lammi, M.R.; Elfferich, M.; Lower, E.; Baughman, R.P.; Sweiss, N.; Judson, M.A.; Drent, M. Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes. Diagnostics 2021, 11, 1089.

AMA Style

Saketkoo LA, Russell A-M, Jensen K, Mandizha J, Tavee J, Newton J, Rivera F, Howie M, Reese R, Goodman M, Hart P, Strookappe B, De Vries J, Rosenbach M, Scholand MB, Lammi MR, Elfferich M, Lower E, Baughman RP, Sweiss N, Judson MA, Drent M. Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes. Diagnostics. 2021; 11(6):1089.

Chicago/Turabian Style

Saketkoo, Lesley A., Anne-Marie Russell, Kelly Jensen, Jessica Mandizha, Jinny Tavee, Jacqui Newton, Frank Rivera, Mike Howie, Rodney Reese, Melanie Goodman, Patricia Hart, Bert Strookappe, Jolanda De Vries, Misha Rosenbach, Mary B. Scholand, Mathew R. Lammi, Marjon Elfferich, Elyse Lower, Robert P. Baughman, Nadera Sweiss, Marc A. Judson, and Marjolein Drent. 2021. "Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes" Diagnostics 11, no. 6: 1089.

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