ArticleThe European journal of health economics : HEPAC : health economics in prevention and care2016
Social/economic costs and health-related quality of life in patients with scleroderma in Europe.
Article in The European journal of health economics : HEPAC : health economics in prevention and care, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
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Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 35 citations in OpenAlex.
- Cost-of-illness studies in nine Central and Eastern European countries.The European journal of health economics : HEPAC : health economics in prevention and care · 2019Pooled it
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- A roadmap for genome projects to foster psychosocial and economic evidence to further policy and practice.Communications medicine · 2025Review
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- Population-level norm values by EQ-5D-3L in Hungary - a comparison of survey results from 2022 with those from 2000.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Health-related quality of life in patients with diverse rare diseases: An online survey.Genetics in medicine open · 2024Article
- Are We Capturing the Socioeconomic Burden of Rare Genetic Disease? A Scoping Review of Economic Evaluations and Cost-of-Illness Studies.PharmacoEconomics · 2023Article
- Rare disease emerging as a global public health priority.Frontiers in public health · 2022Review
- Valuing the "Burden" and Impact of Rare Diseases: A Scoping Review.Frontiers in pharmacology · 2022Article
- Cost-of-illness studies in rare diseases: a scoping review.Orphanet journal of rare diseases · 2021Article
- MicroRNA-21 in Skin Fibrosis: Potential for Diagnosis and Treatment.Molecular diagnosis & therapy · 2017Review
- Productivity Losses and Costs in the Less-Common Systemic Autoimmune Rheumatic Diseases.Current rheumatology reports · 2017Review
Corrections and comments
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Authors and funding
16 authors at 13 institutions in 8 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThe aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with systemic sclerosis (SSc; scleroderma) in Europe.
methodsWe conducted a cross-sectional study of patients with SSc (involving both localised and systemic sclerosis) from Germany, Italy, Spain, France, the UK, Hungary and Sweden. Data on demographic characteristics, healthcare resource utilisation, informal care, labour productivity losses and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire.
resultsA total of 589 patients completed the questionnaire. The rate of patients with localised scleroderma, limited cutan and diffuse cutan SSc were 28, 68 and 4 %, respectively. Average annual costs varied from country to country and ranged from € 4607 to € 30,797 (reference year: 2012). Estimated direct healthcare costs ranged from € 1413 to € 17,300; direct non-healthcare costs ranged from € 1875 to € 4684 and labour productivity losses ranged from € 1701 to € 14,444. The mean EQ-5D index score for adult SSc patients varied from 0.49 to 0.75 and the mean EQ-5D visual analogue scale score was between 58.72 and 65.86.
conclusionThe main strengths of this study lie in our bottom-up approach to costing and our evaluation of SSs patients from a broad societal perspective. This type of analysis is very unusual in the international literature on rare diseases in comparison with other illnesses. We concluded that SSc patients incur considerable societal costs and experience substantial deterioration in HRQOL.
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