{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T17:15:07Z","timestamp":1790874907474,"version":"4.1.0"},"reference-count":166,"publisher":"MDPI AG","issue":"6","license":[{"start":{"date-parts":[[2021,6,15]],"date-time":"2021-06-15T00:00:00Z","timestamp":1623715200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Charles and Elizabeth Wetmore Foundation","award":["not assigned"],"award-info":[{"award-number":["not assigned"]}]},{"DOI":"10.13039\/100000050","name":"National Heart, Lung, and Blood Institute","doi-asserted-by":"publisher","award":["L30 HL129466"],"award-info":[{"award-number":["L30 HL129466"]}],"id":[{"id":"10.13039\/100000050","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100019434","name":"NIHR Exeter Clinical Research Facility","doi-asserted-by":"publisher","award":["70@70"],"award-info":[{"award-number":["70@70"]}],"id":[{"id":"10.13039\/501100019434","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Pulmonary Fibrosis Trust","award":["unknown"],"award-info":[{"award-number":["unknown"]}]},{"name":"Irish Lung Fibrosis Association","award":["unkown"],"award-info":[{"award-number":["unkown"]}]},{"name":"Sarcoidosis Awareness Foundation of Louisiana","award":["not applicable"],"award-info":[{"award-number":["not applicable"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Diagnostics"],"abstract":"<jats:p>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\u2019s 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.<\/jats:p>","DOI":"10.3390\/diagnostics11061089","type":"journal-article","created":{"date-parts":[[2021,6,15]],"date-time":"2021-06-15T11:00:33Z","timestamp":1623754833000},"page":"1089","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":67,"title":["Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes"],"prefix":"10.3390","volume":"11","author":[{"given":"Lesley Ann","family":"Saketkoo","sequence":"first","affiliation":[{"name":"New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA 70112, USA"},{"name":"Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, University Medical Center, New Orleans, LA 70112, USA"},{"name":"Section of Pulmonary Medicine, Louisiana State University School of Medicine, New Orleans, LA 70112, USA"},{"name":"Tulane University School of Medicine, Tulane University, New Orleans, LA 70112, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0468-3537","authenticated-orcid":false,"given":"Anne-Marie","family":"Russell","sequence":"additional","affiliation":[{"name":"College of Medicine and Health, University of Exeter, Devon EX1 2LU, UK"},{"name":"Imperial College Healthcare NHS Foundation Trust, London W2 1NY, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelly","family":"Jensen","sequence":"additional","affiliation":[{"name":"New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA 70112, USA"},{"name":"Tulane University School of Medicine, Tulane University, New Orleans, LA 70112, USA"},{"name":"Department of Internal Medicine, Oregon Health and Science University, Portland, OR 97239, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica","family":"Mandizha","sequence":"additional","affiliation":[{"name":"Respiratory Medicine, Royal Devon and Exeter Hospital NHS Foundation Trust, Exeter EX2 5DW, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jinny","family":"Tavee","sequence":"additional","affiliation":[{"name":"Department of Neurology, National Jewish Health, Denver, CO 80206, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacqui","family":"Newton","sequence":"additional","affiliation":[{"name":"Sarcoidosis UK, China Works, Black Prince Road, London SE1 7SJ, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2393-3623","authenticated-orcid":false,"given":"Frank","family":"Rivera","sequence":"additional","affiliation":[{"name":"Foundation for Sarcoidosis Research, Chicago, IL 60614, USA"},{"name":"National Sarcoidosis Support Group, Stronger than Sarcoidosis, New York, NY 11727, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mike","family":"Howie","sequence":"additional","affiliation":[{"name":"Sarcoidosis UK, China Works, Black Prince Road, London SE1 7SJ, UK"},{"name":"CGI UK, Space Defense & Intelligence (Cyber Security Operations), London EC3M 3BY, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rodney","family":"Reese","sequence":"additional","affiliation":[{"name":"Foundation for Sarcoidosis Research, Chicago, IL 60614, USA"},{"name":"National Sarcoidosis Support Group, Stronger than Sarcoidosis, New York, NY 11727, USA"},{"name":"Sarcoidosis Awareness Foundation of Louisiana, Baton Rouge, LA 70812, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melanie","family":"Goodman","sequence":"additional","affiliation":[{"name":"New Orleans Sarcoidosis Support Group, New Orleans, LA 70112, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patricia","family":"Hart","sequence":"additional","affiliation":[{"name":"iHart Wellness Holistic Approach to Sarcoidosis Certified Health & Wellness Coach, International Association of Professionals, New York, NY 11727, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6605-4907","authenticated-orcid":false,"given":"Bert","family":"Strookappe","sequence":"additional","affiliation":[{"name":"Department of Physiotherapy, Gelderse Vallei Hospital, 10, 6716 RP Ede, The Netherlands"},{"name":"ildcare Foundation Research Team, 6711 NR Ede, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3002-1323","authenticated-orcid":false,"given":"Jolanda","family":"De Vries","sequence":"additional","affiliation":[{"name":"Admiraal de Ruyter Hospital (Adrz), 114, 4462 RA Goes, The Netherlands"},{"name":"Department of Medical and Clinical Psychology, Tilburg University, 5037 AB Tilburg, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Misha","family":"Rosenbach","sequence":"additional","affiliation":[{"name":"Cutaneous Sarcoidosis Clinic, Department of Dermatology, University of Pennsylvania, Philadelphia, PA 19104, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary Beth","family":"Scholand","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine, Interstitial Lung Disease Center, University of Utah, Salt Lake City, UT 84132, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5125-1801","authenticated-orcid":false,"given":"Mathew R.","family":"Lammi","sequence":"additional","affiliation":[{"name":"New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center, New Orleans, LA 70112, USA"},{"name":"Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs, University Medical Center, New Orleans, LA 70112, USA"},{"name":"Section of Pulmonary Medicine, Louisiana State University School of Medicine, New Orleans, LA 70112, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marjon","family":"Elfferich","sequence":"additional","affiliation":[{"name":"Department of Physiotherapy, Gelderse Vallei Hospital, 10, 6716 RP Ede, The Netherlands"},{"name":"ildcare Foundation Research Team, 6711 NR Ede, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elyse","family":"Lower","sequence":"additional","affiliation":[{"name":"Department of Medicine, University of Cincinnati Medical Center, Cincinnati, OH 45267, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert P.","family":"Baughman","sequence":"additional","affiliation":[{"name":"Department of Medicine, University of Cincinnati Medical Center, Cincinnati, OH 45267, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nadera","family":"Sweiss","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, Department of Medicine, University of Illinois at Chicago, Chicago, IL 60612, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marc A.","family":"Judson","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine and Critical Care, Albany Medical College, Albany, NY 12208, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1586-0110","authenticated-orcid":false,"given":"Marjolein","family":"Drent","sequence":"additional","affiliation":[{"name":"ildcare Foundation Research Team, 6711 NR Ede, The Netherlands"},{"name":"Interstitial Lung Diseases (ILD) Center of Excellence, Department of Pulmonology, St. Antonius Hospital, Koekoekslaan 1, 3435 CM Nieuwegein, The Netherlands"},{"name":"Department of Pharmacology and Toxicology, Faculty of Health and Life Sciences, Maastricht University, 40, 6229 ER Maastricht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,6,15]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"00141","DOI":"10.1183\/23120541.00141-2018","article-title":"Sarcoidosis: Patient Treatment Priorities","volume":"4","author":"Baughman","year":"2018","journal-title":"ERJ Open Res."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"255","DOI":"10.1183\/09031936.00002512","article-title":"Sarcoidosis-Associated Fatigue","volume":"40","author":"Drent","year":"2012","journal-title":"Eur. 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