Social/economic costs and health-related quality of life in patients with scleroderma in Europe

López-Bastida, Julio; Linertová, Renata; Oliva‐Moreno, Juan; Serrano‐Aguilar, Pedro; Paz, Manuel Posada de la; Kanavos, Panos; Taruscio, Domenica; Schieppati, Arrigo; Искров, Георги; Péntek, Márta; Delgado, Claudia; Schulenburg, Johann Mathias von der; Persson, Ulf; Chevreul, Karine; Fattore, Giovanni

doi:10.1007/s10198-016-0789-y

Cited by 31 publications

(24 citation statements)

References 36 publications

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“…Besides these, patients with SSc incur considerable costs (eg, non-reimbursement of certain therapies) and experience substantial deterioration in health-related quality of life (HRQoL). 12 13 Additionally, no specific recommendations are at hand regarding non-pharmacological interventions (eg, behavioural/psychological, educational, physical/occupational therapy) to improve HRQoL. However, incentives like the ‘Scleroderma Patient centered Intervention Network’, which aims to develop, test and disseminate a set of accessible interventions designed to complement standard care to improve HRQoL, are encouraging.…”

Section: Unmet Needs Identificationmentioning

confidence: 99%

Systemic sclerosis: state of the art on clinical practice guidelines

et al. 2018

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Systemic sclerosis (SSc) is an orphan disease characterised by autoimmunity, fibrosis of the skin and internal organs, and vasculopathy. SSc may be associated with high morbidity and mortality. In this narrative review we summarise the results of a systematic literature research, which was performed as part of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases project, aimed at evaluating existing clinical practice guidelines or recommendations. Only in the domains ‘Vascular & Ulcers’ (ie, non-pharmacological approach to digital ulcer), ‘PAH’ (ie, screening and treatment), ‘Treatment’ and ‘Juveniles’ (ie, evaluation of juveniles with Raynaud’s phenomenon) evidence-based and consensus-based guidelines could be included. Hence there is a preponderance of unmet needs in SSc referring to the diagnosis and (non-)pharmacological treatment of several SSc-specific complications. Patients with SSc experience significant uncertainty concerning SSc-related taxonomy, management (both pharmacological and non-pharmacological) and education. Day-to-day impact of the disease (loss of self-esteem, fatigue, sexual dysfunction, and occupational, nutritional and relational problems) is underestimated and needs evaluation.

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Section: Unmet Needs Identificationmentioning

confidence: 99%

Systemic sclerosis: state of the art on clinical practice guidelines

et al. 2018

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“…For example, the annual direct per patient cost of SSc in Canada is estimated to be CAD$5038, [ 5 ] in the US to range between USD$8441 and $17,365, [ 23 , 24 ] in Spain to be €8235, [ 7 ] in France to be €8452, [ 6 ] in Hungry to be €4232, [ 3 ] and in Europe to range between €1413 and 17,300. [ 8 ] In our study, hospital related cost accounted for the majority of the total direct healthcare cost (44.4%), followed by medication cost (31.2%) and ambulatory care cost (21.1%). Our healthcare costs in SSc are consistent with other countries such as Canada where hospital cost accounted for 34.9% while medication cost accounted for 31.2% of direct cost in SSc patients, [ 5 ] and in America were ambulatory care accounted for 19% of the total healthcare cost incurred by SSc patients.…”

Section: Discussionmentioning

confidence: 73%

“…Studies of healthcare utilization and economic burden specific to SSc are scarce and those available are cross-sectional or retrospective in nature, with small patient cohorts. [ 6 – 8 ] Economic and health-related quality of life studies are essential for clinicians and health policy makers in order to quantify the burden of disease and to assess the outcomes of health policies and interventions.…”

Section: Introductionmentioning

confidence: 99%

Quantifying the direct public health care cost of systemic sclerosis

et al. 2017

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“…Lõpez‐Bastida et al conducted a cross‐sectional study of 589 patients with SSc from Germany, Italy, Spain, France, the UK, Hungary, and Sweden in 2016 28 . The researchers collected data on demographic characteristics, healthcare resource utilization, informal care, labor productivity losses, and health‐related quality of life from the questionnaires completed by patients or their caregivers.…”

Section: Resultsmentioning

confidence: 99%

“…Average annual costs varied largely among countries. Direct medical costs ranged from $2021 to $24 748, and direct non‐medical costs ranged from $2682 to $6701 28 …”

Section: Resultsmentioning

confidence: 99%

The economic burden of systemic sclerosis—A systematic review

Chen

Hernández‐Muñoz

et al. 2021

Int J of Rheum Dis

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Aim Systemic sclerosis (SSc) is a rare, chronic autoimmune disease associated with a substantial economic burden. This study aimed to assess the costs associated with SSc and to identify major cost drivers. Methods A systematic search was conducted in MEDLINE and Embase to identify relevant studies. Two independent reviewers evaluated studies based on inclusion/exclusion criteria and performed data extraction. Costs were converted into 2017 US dollars by purchasing power parity. The review was conducted following the Preferred Reporting Items for Systematic Review and Meta‐analysis (PRISMA) guideline. Results The original literature search identified 113 potentially relevant citations, of which 10 articles met all the inclusion/exclusion criteria and were included in the data extraction and analysis. The identified studies evaluated costs associated with SSc in 11 countries from North America, Europe, and Australia published between 2009 and 2018. Eight studies reported direct costs and seven studies reported indirect costs. Direct costs varied from $3356 (Hungary) to $27 032 (Germany) with hospitalization and medication being two of the biggest components of direct medical costs in most studies. The indirect costs for lost productivity varied from $2433 (Italy) to $20 663 (UK), accounting for a significant portion of the total economic burden. Conclusions Large variations existed in annual costs of SSc, but all studies found that SSc imposed a substantial economic burden on patients and their families. The identified studies were mostly from high‐income countries and there is still a knowledge gap regarding the cost of SSc in other parts of the world.

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Social/economic costs and health-related quality of life in patients with scleroderma in Europe

Cited by 31 publications

References 36 publications

Systemic sclerosis: state of the art on clinical practice guidelines

Systemic sclerosis: state of the art on clinical practice guidelines

Quantifying the direct public health care cost of systemic sclerosis

The economic burden of systemic sclerosis—A systematic review

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