Humanistic and cost burden of systemic sclerosis: A review of the literature

Fischer, Aryeh; Zimovetz, Evelina; Ling, Caroline; Eßer, Dirk; Schoof, Nils

doi:10.1016/j.autrev.2017.09.010

Cited by 47 publications

(40 citation statements)

References 21 publications

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“…Given the considerable comorbidity burden of SSc and the availability of limited, and only partly effective, treatment options, it is not surprising that substantial healthcare costs associated with SSc have been reported 12 . However, the economic burden of SSc has been estimated in a limited number of studies [12][13][14][15][16][17] , with only 2 such studies 18,19 including US patients. One of them (Furst,et al 18 ) found that patients with SSc had significantly higher annual healthcare costs and healthcare resource utilization (HRU) than matched controls but only included data up to 2008, and thus may be outdated and not reflective of the current treatment landscape.…”

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confidence: 99%

Economic Burden among Commercially Insured Patients with Systemic Sclerosis in the United States

Zhou

Fan²,

Tang³

et al. 2019

J Rheumatol

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Objective.To quantify healthcare resource utilization (HRU), work loss, and annual direct and indirect healthcare costs among patients with systemic sclerosis (SSc) compared to matched controls in the United States.Methods.Data were obtained from a large US commercial claims database. Patients were ≥ 18 years old at the index date (first SSc diagnosis) and had ≥ 1 SSc diagnosis in the inpatient (IP) or emergency room (ER) setting, or ≥ 2 SSc diagnoses on 2 different dates in the outpatient (OP) setting between January 1, 2005, and March 31, 2015; continuous enrollment was required during the followup period (12 months after the index date). Individuals with no SSc diagnoses were matched 1:1 to patients with SSc. Wilcoxon signed-rank and McNemar tests were used for comparisons and regressions with generalized estimating equations for adjusted OR (aOR) and incidence rate ratios (IRR) between 2 cohorts.Results.There were 2192 pairs of patients with SSc and matched controls included (mean age 57.6 yrs; 84.3% female); of these, 233 were eligible for work loss/indirect cost analyses. Compared to matched controls, patients with SSc had significantly higher HRU and costs during the 1-year followup period, IP admissions (adjusted IRR = 2.4), IP hospitalization days (adjusted IRR = 3.1), ER visits (adjusted IRR = 2.0), OP visits (adjusted IRR = 2.3), and days of work loss (adjusted IRR = 2.6). The adjusted difference in annual direct and indirect costs was US$12,820 and $3103, respectively (all p < 0.0001).Conclusion.Patients with SSc had a high direct and indirect economic burden postdiagnosis.

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confidence: 99%

Economic Burden among Commercially Insured Patients with Systemic Sclerosis in the United States

Zhou

Fan²,

Tang³

et al. 2019

J Rheumatol

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“…Estimated cumulative 10‐year survival is between 56–78%, depending on the disease severity (Rubio‐Rivas, Royo, Simeon, Corbella, & Fonollosa, ). Although the total number of affected SSc patients per country is low, the economic and human burden is high (Fischer, Zimovetz, Ling, Esser, & Schoof, ). SSc patients are high users of healthcare resources and have high annual medical costs—particularly those patients with serious disease complications and more functional disability (Chevreul, Brigham, Gandre, Mouthon, & Network, ; Meijs et al, ).…”

Section: Introductionmentioning

confidence: 99%

Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol

Kocher

Simon

Dwyer

et al. 2019

Journal of Advanced Nursing

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Aim The aim of the management of systemic sclerosis (MANOSS) study described in this protocol is to develop a chronic care model, based on a contextual analysis and stakeholder involvement, for patients living with the rare disease systemic sclerosis (SSc) in Switzerland. Design Applying an implementation science approach, this study starts with an explanatory sequential mixed method study for contextual analysis, followed by broad stakeholder involvement for model development and a Delphi study to reach consensus. Methods First, a quantitative cross‐sectional survey with patients and healthcare professionals (HPs) will be conducted to identify current practice patterns of chronic illness management and technology readiness. Second, qualitative interviews with patients, family members and HPs will be performed to gain a deeper understanding of care needs identified in the quantitative survey. Third, a model of care will be co‐created with input from patients, HPs and other experts. The eHealth enhanced Chronic Care Model will serve as a guiding framework. The new model and corresponding outcome parameters will be refined using a Delphi‐study approach to reach consensus on a testable model of care for persons living with SSc. The protocol has received research ethics committee approval in September 2018 by the Swiss Ethics Committee. Discussion The MANOSS study's participatory approach is essential for contextual fit of the model for patients with SSc in this setting. Subsequent feasibility testing and implementation are planned to evaluate the model's value in relation to health disparities faced by this patient population. Impact Patients living with this rare disease lack access to coordinated, specialized care and self‐management support from qualified HPs. Reengineering of current care, with consideration for technological opportunities, is warranted to meet patients’ and families’ needs.

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“…The systemic connective tissue diseases (SCTD) including systemic vasculitis, systemic lupus erythematosus (SLE), systemic sclerosis (SSc), Sjögren syndrome, polymyositis and dermatomyositis are a group of chronic inflammatory systemic autoimmune disorders associated with disability, pain, deterioration in quality of life, morbidity and excess mortality . These disorders are also associated with substantial health care costs and productivity losses (work disability, early retirement) imposing significant economic burden on patients, healthcare systems and societies . For instance, there was a 3‐fold difference in total costs for SLE in an incipient cohort compared with matched population controls in southern Sweden .…”

Section: Introductionmentioning

confidence: 99%

“…For instance, there was a 3‐fold difference in total costs for SLE in an incipient cohort compared with matched population controls in southern Sweden . Hospitalizations are a key driver of healthcare costs among people with SCTD . A recent study estimated that 58% of total healthcare costs of Swedish patients with SLE were attributed to hospitalization .…”

Section: Introductionmentioning

confidence: 99%

Hospitalizations due to systemic connective tissue diseases: Secular trends and regional disparities in Sweden, 1998‐2016

2018

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Humanistic and cost burden of systemic sclerosis: A review of the literature

Cited by 47 publications

References 21 publications

Economic Burden among Commercially Insured Patients with Systemic Sclerosis in the United States

Economic Burden among Commercially Insured Patients with Systemic Sclerosis in the United States

Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol

Hospitalizations due to systemic connective tissue diseases: Secular trends and regional disparities in Sweden, 1998‐2016

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