Health-Related Quality of Life in Sarcoidosis

Ndili, Ogugua

doi:10.1055/s-0040-1710080

Cited by 12 publications

(8 citation statements)

References 169 publications

(325 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…HRQoL describes the impact of a health condition, such as ILD, or ageing on a person's life. This includes symptom burden, patient-perceived disease severity, treatment adverse effects, healthcare interactions, as well as physical, psychological, and social well being [29 ▪ ,30]. HRQoL reflects the degree of ease with which one is able to still care for themselves and participate in important areas of life (family, work/school, social, hobbies).…”

Section: Frailty and Health Related Quality Of Lifementioning

confidence: 99%

Ageing with Interstitial lung disease: preserving health and well being

Saketkoo

Ndili

Patterson

et al. 2022

Current Opinion in Pulmonary Medicine

Self Cite

View full text Add to dashboard Cite

Purpose of reviewAgeing, the accrual of molecular and cellular damage over a lifetime confers progressive physiologic dysfunction of bodily systems, leaving the body in a heightened state of vulnerability to biophysical and psychosocial stressors. The inflection point is frailty which easily leads to disability and death. Interstitial lung disease (ILD) creates biophysical and psychosocial stresses difficult for even optimally fit patients to cope with. With evolving ILD treatment pathways, people with ILD are living longer. Recent findingsILD and ageing are bi-directionally influential: ILD, its treatments, complications, and collateral systemic extra-pulmonary damage (hypoxic and oxidative stress) wear on the ageing person and ageing impacts a person's tolerance of ILD. ILD extent may proportionally accelerate age-related vulnerabilities. ILD related to inflammatory systemic diseases, e.g. connective tissue diseases or sarcoidosis, exert an even more complex biophysical impact on the body.

show abstract

Section: Frailty and Health Related Quality Of Lifementioning

confidence: 99%

Ageing with Interstitial lung disease: preserving health and well being

Saketkoo

Ndili

Patterson

et al. 2022

Current Opinion in Pulmonary Medicine

Self Cite

View full text Add to dashboard Cite

show abstract

“…Consequently, though well intended, the specifics of these concepts are subject to interpretation. Furthermore, there remains an inconsistency in the risk parameters and PROMs used to quantify these concepts ( 26 ). For patients with pulmonary sarcoidosis, initiation of systemic treatment is reserved for patients who communicate symptomatic disease impacting HRQoL ( 4 , 5 ); and/or whether the patient’s disease can lead to progressive lung function decline or significant morbidity or mortality ( 4 , 5 , 27 ).…”

Section: Brief Review Of the Currently Available Medications And Trea...mentioning

confidence: 99%

Sarcoidosis: Updates on therapeutic drug trials and novel treatment approaches

et al. 2022

Self Cite

View full text Add to dashboard Cite

Sarcoidosis is a systemic granulomatous inflammatory disease of unknown etiology. It affects the lungs in over 90% of patients yet extra-pulmonary and multi-organ involvement is common. Spontaneous remission of disease occurs commonly, nonetheless, over 50% of patients will require treatment and up to 30% of patients will develop a chronic progressive non-remitting disease with marked pulmonary fibrosis leading to significant morbidity and death. Guidelines outlining an immunosuppressive treatment approach to sarcoidosis were recently published, however, the strength of evidence behind many of the guideline recommended drugs is weak. None of the drugs currently used for the treatment of sarcoidosis have been rigorously studied and prescription of these drugs is often based on off-label” indications informed by experience with other diseases. Indeed, only two medications [prednisone and repository corticotropin (RCI) injection] currently used in the treatment of sarcoidosis are approved by the United States Food and Drug Administration. This situation results in significant reimbursement challenges especially for the more advanced (and often more effective) drugs that are favored for severe and refractory forms of disease causing an over-reliance on corticosteroids known to be associated with significant dose and duration dependent toxicities. This past decade has seen a renewed interest in developing new drugs and exploring novel therapeutic pathways for the treatment of sarcoidosis. Several of these trials are active randomized controlled trials (RCTs) designed to recruit relatively large numbers of patients with a goal to determine the safety, efficacy, and tolerability of these new molecules and therapeutic approaches. While it is an exciting time, it is also necessary to exercise caution. Resources including research dollars and most importantly, patient populations available for trials are limited and thus necessitate that several of the challenges facing drug trials and drug development in sarcoidosis are addressed. This will ensure that currently available resources are judiciously utilized. Our paper reviews the ongoing and anticipated drug trials in sarcoidosis and addresses the challenges facing these and future trials. We also review several recently completed trials and draw lessons that should be applied in future.

show abstract

“…Regardless of organ phenotype and demographic features, quality of life impairment is common in sarcoidosis. 15 16 In a large survey, quality of life was the most important disease metric identified by patients. 17 In addition to psychosocial strain, sarcoidosis is associated with work absenteeism, which is a risk for financial strain.…”

Section: Introductionmentioning

confidence: 99%

“…Regardless of organ phenotype and demographic features, quality of life impairment is common in sarcoidosis 15 16. In a large survey, quality of life was the most important disease metric identified by patients 17.…”

Section: Introductionmentioning

confidence: 99%

Rationale and design of the SARCoidosis Outcomes in all respiratory Viral Infectious Diseases (SARCOVID) Study

et al. 2022

View full text Add to dashboard Cite

IntroductionRespiratory infections are ubiquitous. The COVID-19 pandemic has refocused our attention on how morbid and potentially fatal they can be, and how host factors have an impact on the clinical course and outcomes. Due to a range of vulnerabilities, patients with sarcoidosis may be at higher risk of poor outcomes from respiratory infections. The objective of the SARCoidosis Outcomes in all respiratory Viral Infectious Diseases (SARCOVID) Study is to determine the short-term and long-term impacts of respiratory viral illnesses (COVID-19 and non-COVID-19) in sarcoidosis.Methods and analysisUp to 20 clinical sites across the USA are participating in the recruitment of 2000 patients for this observational, prospective study. To ensure that the study cohort is representative of the general population with sarcoidosis, participating sites include those dedicated to reaching under-represented minorities or patients from non-urban areas. Baseline data on demographic features, comorbidities, sarcoidosis characteristics and pre-enrolment lung function will be captured at study entry. During this 3-year study, all acute respiratory infectious events (from SARS-CoV-2 and any other respiratory pathogen) will be assessed and recorded at quarterly intervals. The level of required medical care and survival outcomes determine infection severity, and the impact of infection on quality of life measures will be recorded. Post-infection lung function and imaging results will measure the long-term impact on the trajectory of sarcoidosis. Patients will be analysed according to the clinical phenotypes of cardiac and fibrotic pulmonary sarcoidosis. Control groups include non-infected patients with sarcoidosis and patients with non-sarcoidosis interstitial lung disease.Ethics and disseminationEach site received local institutional review board approval prior to enrolling patients, with the consent process determined by local institution standards. Data will be published in a timely manner (goal <12 months) at the conclusion of the 3-year follow-up period and will be made available upon request.

show abstract

Health-Related Quality of Life in Sarcoidosis

Cited by 12 publications

References 169 publications

Ageing with Interstitial lung disease: preserving health and well being

Ageing with Interstitial lung disease: preserving health and well being

Sarcoidosis: Updates on therapeutic drug trials and novel treatment approaches

Rationale and design of the SARCoidosis Outcomes in all respiratory Viral Infectious Diseases (SARCOVID) Study

Contact Info

Product

Resources

About