Health-related quality of life (HRQoL) in sarcoidosis: Diagnosis, management and health outcomes

Lesley Ann Saketkoo*, 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 Beth Scholand, Mathew R. Lammi, Marjon Elfferich, Elyse Lower, Robert P. Baughman, Nadera SweissMarc A. Judson, Marjolein Drent

*Corresponding author for this work

Research output: Contribution to journalReview articleScientificpeer-review

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Abstract

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.
Original languageEnglish
Article number1089
Number of pages35
JournalDiagnostics
Volume11
Issue number6
DOIs
Publication statusPublished - 2021

Keywords

  • ALL-CAUSE MORTALITY
  • EVERYDAY COGNITIVE FAILURE
  • FATIGUE ASSESSMENT SCALE
  • IDIOPATHIC PULMONARY-FIBROSIS
  • IMPORTANT DIFFERENCE
  • INTERSTITIAL LUNG-DISEASE
  • PALLIATIVE CARE
  • PATIENT PERSPECTIVES
  • SMALL FIBER NEUROPATHY
  • SYSTEMIC-SCLEROSIS
  • exercise
  • mindfulness
  • patient centered care
  • patient-centeredness
  • physical activity
  • quality of life
  • sarcoidosis
  • shared decision making
  • symptom burden
  • symptom distress

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