TY - JOUR
T1 - Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes
AU - Saketkoo, L.A.
AU - Russell, A.M.
AU - Jensen, K.
AU - Mandizha, J.
AU - Tavee, J.
AU - Newton, J.
AU - Rivera, F.
AU - Howie, M.
AU - Reese, R.
AU - Goodman, M.
AU - Hart, P.
AU - Strookappe, B.
AU - De Vries, J.
AU - Rosenbach, M.
AU - Scholand, M.B.
AU - Lammi, M.R.
AU - Elfferich, M.
AU - Lower, E.
AU - Baughman, R.P.
AU - Sweiss, N.
AU - Judson, M.A.
AU - Drent, M.
PY - 2021/6/1
Y1 - 2021/6/1
N2 - 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.
AB - 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.
KW - ALL-CAUSE MORTALITY
KW - EVERYDAY COGNITIVE FAILURE
KW - FATIGUE ASSESSMENT SCALE
KW - IDIOPATHIC PULMONARY-FIBROSIS
KW - IMPORTANT DIFFERENCE
KW - INTERSTITIAL LUNG-DISEASE
KW - PALLIATIVE CARE
KW - PATIENT PERSPECTIVES
KW - SMALL FIBER NEUROPATHY
KW - SYSTEMIC-SCLEROSIS
KW - exercise
KW - mindfulness
KW - patient centered care
KW - patient-centeredness
KW - physical activity
KW - quality of life
KW - sarcoidosis
KW - shared decision making
KW - symptom burden
KW - symptom distress
U2 - 10.3390/diagnostics11061089
DO - 10.3390/diagnostics11061089
M3 - (Systematic) Review article
C2 - 34203584
SN - 2075-4418
VL - 11
JO - Diagnostics
JF - Diagnostics
IS - 6
M1 - 1089
ER -