A conceptual model of health-related quality of life in sarcoidosis

Victorson, David; Cella, David; Grund, Heidi; Judson, Marc A.

doi:10.1007/s11136-013-0438-1

Cited by 26 publications

(16 citation statements)

References 29 publications

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“…An assessment of overall organ involvement, extrapulmonary physician organ severity tool (ePOST) [36], was performed at each visit, using all information available to the physician. Patients also completed several additional patient reported outcomes (PRO) questionnaires, including the 36-item short form health survey (SF-36) [37], the Fatigue Assessment Scale (FAS) [38], the sarcoidosis assessment tool (SAT) [39], and a patient global assessment (PGA) of overall wellbeing on a visual analogue scale. An Independent Data Monitoring Committee reviewed all available data after the 15th randomised patient had completed the week-16 visit and, periodically, thereafter.…”

Section: Methodsmentioning

confidence: 99%

Safety and efficacy of ustekinumab or golimumab in patients with chronic sarcoidosis

et al. 2014

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Sarcoidosis is characterised by non-caseating granulomas that secrete pro-inflammatory cytokines, including interleukin (IL)-12, IL-23, and tumour necrosis factor (TNF)-a. Ustekinumab and golimumab are monoclonal antibodies that specifically inhibit IL-12/IL-23 and TNF-a, respectively.Patients with chronic pulmonary sarcoidosis (lung group) and/or skin sarcoidosis (skin group) received either 180 mg ustekinumab at week 0 followed by 90 mg every 8 weeks, 200 mg golimumab at week 0 followed by 100 mg every 4 weeks, or placebo. Patients underwent corticosteroid tapering between weeks 16 and 28. The primary end-point was week 16 change in percentage predicted forced vital capacity (DFVC % pred) in the lung group. Major secondary end-points were: week 28 for DFVC % pred, 6-min walking distance, St George's Respiratory Questionnaire (lung group), and Skin Physician Global Assessment response (skin group).At week 16, no significant differences were observed in DFVC % pred with ustekinumab (-0.15, p50.13) or golimumab (1.15, p50.54) compared with placebo (2.02). At week 28, there were no significant improvements in the major secondary end-points, although a nonsignificant numerically greater Skin Physician Global Assessment response was observed following golimumab treatment (53%) when compared with the placebo (30%). Serious adverse events were similar in all treatment groups.Although treatment was well tolerated, neither ustekinumab nor golimumab demonstrated efficacy in pulmonary sarcoidosis. However, trends towards improvement were observed with golimumab in some dermatological end-points. @ERSpublicationsNeither ustekinumab nor golimumab demonstrated efficacy for the treatment of patients with pulmonary sarcoidosis

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Section: Methodsmentioning

confidence: 99%

Safety and efficacy of ustekinumab or golimumab in patients with chronic sarcoidosis

et al. 2014

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“…Patients with sarcoidosis often report a diminished health-related quality of life [58], with a range of symptoms such as emotional distress, lung problems, pain, physical limitations, fatigue, social limitations, eye issues, skin disorders, and sleep disruption [59]. Side effects of treatments for sarcoidosis may also negatively impact quality of life for these patients [60].…”

Section: Differences In Prognosismentioning

confidence: 99%

Sarcoidosis: Sex-Dependent Variations in Presentation and Management

Birnbaum

Rifkin

2014

Journal of Ophthalmology

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Sarcoidosis is an inflammatory disease with a wide range of clinical presentations. The manifestations and prognosis in sarcoidosis are dependent upon not only organ involvement but also age and sex. The purpose of this review is to describe the systemic and ocular manifestations of sarcoidosis with a specific focus on sex-dependent difference in presentation and management. Sarcoidosis is more common in women, particularly in patients who present after age of 50 years. Women with sarcoidosis are more likely to develop cystoid macular edema and the mortality rate is higher than that of men.

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“…55,56 They are self-administered questionnaires that assess a patient's subjective feeling of wellbeing, perception of relevant physical symptoms, and their opinion of the impact of disease on their QoL. 55,[57][58][59] PROMs should be approved by the Food and Drug Administration Agency prior to implementation and should be reliable, valid, and able to detect change. 55 Detailed discussions of these concepts are beyond the scope of this paper, and a brief description is provided below and summarized in ►Table 1.…”

Section: Patient-reported Outcome Measuresmentioning

confidence: 99%

“…Sarcoidosis is a systemic disease with protean clinical manifestations, and generic measures of HRQoL are not always sufficiently sensitive to detect the impact of all aspects of disease on QoL. 57,58,117 Additionally, assessing HRQoL in sarcoidosis presents a unique challenge because successful antigranuloma treatment is not always associated with improved HRQoL. 5,30,46,47,57,118 Sarcoidosis-specific PROMs have been developed to address these shortcomings and include the SHQ, 35,68,72,73,107,[118][119][120][121][122] Kings Sarcoidosis Questionnaire (KSQ), 92,[123][124][125][126][127] and the Sarcoidosis Assessment Tool (SAT) 93,118 (►Table 3).…”

Section: Sarcoidosis-specific Patient-reported Outcome Measuresmentioning

confidence: 99%

“…The SAT was developed by modifying an existing instrument: patient-reported outcomes measurement information system (PROMIS) and adding new sarcoid-specific items based on a conceptual model of HRQoL in sarcoidosis that encompassed several overlapping domains identified through physician and patient-based interviews. 57,58,93 Judson et al found that after adjusting for race, age, gender, and severity of illness, patients who received higher cumulative doses of corticosteroids (>500 mg) in the preceding year had worse HRQoL scores on the SAT-fatigue, SAT-daily activities, and SAT-satisfaction domains but not on the SAT-pain and -lung domains. 118 This suggests that fatigue and inability to perform daily activities are associated with lower HRQoL despite more aggressive antigranuloma therapy with corticosteroids.…”

Section: Sarcoidosis Health Questionnairementioning

confidence: 99%

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Health-Related Quality of Life in Sarcoidosis

Ndili

2020

Semin Respir Crit Care Med

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Health-related quality of life (HRQoL) describes an individual's perception of the impact of health, disease, and treatment on their quality of life (QoL). It is a reflection of how the manifestation of an illness and its treatment is personally experienced. Assessing HRQoL is particularly important in sarcoidosis because the attributable disease mortality is relatively low, and one of the major reasons for initiating treatment is to improve quality of life. HRQoL has been assessed in sarcoidosis using various generic and sarcoid-specific patient-reported outcome measures (PROMs). It is important that both the direct and indirect effects of the disease, as well as potential toxicities of therapy, are captured in the various PROMs used to assess HRQoL in sarcoidosis. This article provides a general overview of HRQoL in patients with sarcoidosis. It describes the various PROMs used to assess HRQoL in sarcoidosis and addresses the various factors that influence HRQoL in sarcoidosis. Specific attention is paid to fatigue, small fiber neuropathy, corticosteroid therapy, and other disease-specific factors that affect HRQoL in sarcoidosis. It also provides an insight into interventions that have been associated with improved HRQoL in sarcoidosis and offers suggestions for future research in this important area.

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A conceptual model of health-related quality of life in sarcoidosis

Cited by 26 publications

References 29 publications

Safety and efficacy of ustekinumab or golimumab in patients with chronic sarcoidosis

Safety and efficacy of ustekinumab or golimumab in patients with chronic sarcoidosis

Sarcoidosis: Sex-Dependent Variations in Presentation and Management

Health-Related Quality of Life in Sarcoidosis

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