Science and Research

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

OBJECTIVE: The 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. METHODS: We 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. RESULTS: A 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 euro 4607 to euro 30,797 (reference year: 2012). Estimated direct healthcare costs ranged from euro 1413 to euro 17,300; direct non-healthcare costs ranged from euro 1875 to euro 4684 and labour productivity losses ranged from euro 1701 to euro 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. CONCLUSION: The 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.

  • Lopez-Bastida, J.; Linertova, R.; Oliva-Moreno, J.; Serrano-Aguilar, P.; Posada-de-la-Paz, M.; Kanavos, P.; Taruscio, D.; Schieppati, A.; Iskrov, G.; Pentek, M.; Delgado, C.; von der Schulenburg, J. M.; Persson, U.; Chevreul, K.; Fattore, G.; Burqol-Rd Research Network

Keywords

  • Adult
  • Aged
  • Caregivers
  • *Cost of Illness
  • Cross-Sectional Studies
  • Europe
  • Female
  • *Health Care Costs/statistics & numerical data
  • Humans
  • Male
  • Middle Aged
  • Patient Care/economics
  • *Quality of Life
  • Registries
  • Scleroderma, Systemic/*economics/psychology
  • Sick Leave/economics
  • Sickness Impact Profile
  • Socioeconomic Factors
  • Surveys and Questionnaires
  • United Kingdom
  • Visual Analog Scale
  • *Economic burden
  • *Health-related quality of life
  • *Localised scleroderma
  • *Scleroderma
  • *Systemic sclerosis
Publication details
DOI: 10.1007/s10198-016-0789-y
Journal: The European journal of health economics : HEPAC : health economics in prevention and care
Pages: 109-17 
Work Type: Original
Location: BREATH
Disease Area: COPD
Partner / Member: LUH
Access-Number: 27038626
See publication on PubMed

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