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

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.

The relationship between grip strength with health-related quality of life and mortality in hemodialysis patients

“…In addition, impaired quality of life reflects a compromised physical, social, environmental, and emotional state. Such aspects are more associated with the worsening of health status and not necessarily as a direct cause of mortality [ 40 ].…”

Small Fiber Neuropathy in Sarcoidosis

“…At the same time, when focusing on the main complaints as well as on instrumental and laboratory deviations, clinicians often do not attach the necessary importance to the manifestations of SFN. It is necessary to identify the main causes that are responsible for a patient’s quality of life deteriorating in order to determine a treatment strategy and to improve the prognosis of the patient’s disease [ 31 , 32 ].…”

Ageing with Interstitial lung disease: preserving health and well being

“…Even people described as frail benefit from and tolerate exercise and increased activity [21–26,27 ▪▪ ,28 ▪ ,32 ▪ ,33–35,61,62,63 ▪ ]. As part of medication history-taking, routinely documenting exercise and physical activity, allows for review of patient goals and priorities and for continued encouragement and education [28 ▪ ,29 ▪ ,32 ▪ ].…”