Social economic costs and health-related quality of life in patients with systemic sclerosis in Spain

Arthritis Care and Research

Volumn 66, Issue 3, 2014, Pages 473-480

  Lõpez Bastida, Julio ^a,b   Linertová, Renata ^b,c   Oliva Moreno, Juan ^a,b   Posada De La Paz, Manuel ^d   Serrano Aguilar, Pedro ^b,e  

^a UNIVERSITY OF CASTILLA LA MANCHA   (Spain)

^b Red de Investigación en Servicios Sanitarios en Enfermedades   (Spain)

^c BaEcon: Canary Islands Foundation for Health and Research   (Spain)

^d INSTITUTO DE SALUD CARLOS III   (Spain)

^e Evaluation and Planning Service at Canary Islands Health Service   (Spain)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; BARTHEL INDEX; CAREGIVER; CONTROLLED STUDY; COST OF ILLNESS; DEMOGRAPHY; ECONOMIC EVALUATION; FEMALE; HEALTH CARE COST; HEALTH CARE POLICY; HEALTH CARE UTILIZATION; HUMAN; INFORMATION PROCESSING; MAJOR CLINICAL STUDY; MALE; MEDICAL LITERATURE; MIDDLE AGED; PRODUCTIVITY; QUALITY OF LIFE; QUESTIONNAIRE; RESOURCE ALLOCATION; SPAIN; SYSTEMIC SCLEROSIS; VISUAL ANALOG SCALE;

ADULT; COST OF ILLNESS; CROSS-SECTIONAL STUDIES; EFFICIENCY; FEMALE; HUMANS; MALE; MIDDLE AGED; QUALITY OF LIFE; RETROSPECTIVE STUDIES; SCLERODERMA, SYSTEMIC; SPAIN;

EID: 84896804517     PISSN: 2151464X     EISSN: 21514658     Source Type: Journal    
DOI: 10.1002/acr.22167     Document Type: Article

References (50)

1. Commission of the European Countries. Communication from the commission to the European Parliament, the council, the European economic and social Committee and the committee of the regions on rare diseases: Europe's challenges. 2008. URL: http://ec.europa.eu/health/ph-threats/non-com/docs/rare- com-en.pdf.
2. Chifflot H, Fautrel B, Sordet C, Chatelus E, Sibilia J,. Incidence and prevalence of systemic sclerosis: a systematic literature review. Semin Arthritis Rheum 2008; 37: 223-35.
3. Czirjak L, Kiss CG, Lovei C, Suto G, Varju C, Fuzesi Z, et al. Survey of Raynaud's phenomenon and systemic sclerosis based on a representative study of 10,000 South-Transdanubian Hungarian inhabitants. Clin Exp Rheumatol 2005; 23: 801-8.
4. Villaverde-Hueso A, de la Paz MP, Martin-Arribas MC, Sanchez-Valle E, Ramirez-Gonzalez A, Biairdi P,. Prevalence of scleroderma in Spain: an approach for estimating rare disease prevalence using a disease model. Pharmacoepidemiol Drug Saf 2008; 17: 1100-7.
5. Silman A, Jannini S, Symmons D, Bacon P,. An epidemiological study of scleroderma in the West Midlands. Br J Rheumatol 1988; 27: 286-90.
6. Arias-Nunez MC, Llorca J, Vazquez-Rodriguez TR, Gomez-Acebo I, Miranda-Filloy JA, Martin J, et al. Systemic sclerosis in northwestern Spain: a 19-year epidemiologic study. Medicine (Baltimore) 2008; 87: 272-80.
7. Seibold J,. Scleroderma. In:, Harris E, Budd RC, Firestein GS, Genovese MC, Sergent JS, Ruddy S, et al, editors. Kelley's textbook of rheumatology. 7th ed. Philadelphia: Elsevier; 2005. p. 1279-308.
8. Thombs B, Taillefer S, Hudson M, Baron M,. Depression in patients with systemic sclerosis: a systematic review of the evidence. Arthritis Rheum 2007; 57: 1089-97.
9. Gyger G, Baron M,. Gastrointestinal manifestations of scleroderma: recent progress in evaluation, pathogenesis, and management. Curr Rheumatol Rep 2012; 14: 22-9.
10. Minier T, Pentek M, Brodszky V, Ecseki A, Karpati K, Polgar A, et al. Cost-of-illness of patients with systemic sclerosis in a tertiary care centre. Rheumatology (Oxford) 2010; 49: 1920-8.
11. Bernatsky S, Hudson M, Panopalis P, Clarke AE, Pope J, LeClercq S, et al, and the Canadian Scleroderma Research Group. The cost of systemic sclerosis. Arthritis Rheum 2009; 61: 119-23.
12. Belotti Masserini A, Zeni S, Cossutta R, Soldi A, Fantini F,. Cost-of-illness in systemic sclerosis: a retrospective study of an Italian cohort of 106 patients. Reumatismo 2003; 55: 245-55.
13. Wilson L,. Cost-of-illness of scleroderma: the case for rare diseases. Semin Arthritis Rheum 1997; 27: 73-84.
14. Hudson M, Thombs D, Steele R, Panopalis P, Newton E, Baron M, and the Canadian Scleroderma Research Group. Health-related quality of life in systemic sclerosis: a systematic review. Arthritis Rheum 2009; 61: 1112-20.
15. Strickland G, Pauling J, Cavill C, McHugh N,. Predictors of health-related quality of life and fatigue in systemic sclerosis: evaluation of the EuroQol-5D and FACIT-F assessment tools. Clin Rheumatol 2012; 31: 1215-22.
16. Gualtierotti R, Scalone L, Ingegnoli F, Cortesi P, Lubatti C, Zeni S, et al. Health related quality of life assessment in patients with systemic sclerosis. Reumatismo 2010; 62: 210-4.
17. Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Baron M, and the Canadian Scleroderma Research Group. Quality of life in patients with systemic sclerosis compared to the general population and patients with other chronic conditions. J Rheumatol 2009; 36: 768-72.
18. Hudson M, Steele R, Taillefer S, Baron M, and the Canadian Scleroderma Research Group. Quality of life in systemic sclerosis: psychometric properties of the World Health Organization Disability Assessment Schedule II. Arthritis Rheum 2008; 59: 270-8.
19. Andrade TL, Camelier AA, Rosa FW, Santos MP, Jezler S, Pereira e Silva JL,. Applicability of the 12-Item Short-Form health survey in patients with progressive systemic sclerosis. J Bras Pneumol 2007; 33: 414-22.
20. Khanna D, Ahmed M, Furst DE, Ginsburg SS, Park GS, Hornung R, et al. Health values of patients with systemic sclerosis. Arthritis Rheum 2007; 57: 86-93.
21. Rannou F, Poiraudeau S, Berezne A, Baubet T, Le-Guern V, Cabane J, et al. Assessing disability and quality of life in systemic sclerosis: construct validities of the Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Systemic Sclerosis HAQ, and Medical Outcomes Study 36-Item Short Form Health Survey. Arthritis Rheum 2007; 57: 94-102.
22. Linertova R, Serrano-Aguilar P, Posada-de-la-Paz M, Hens-Perez M, Kanavos P, Taruscio D, et al, on behalf of BURQOL -RD Research Group. Delphi approach to select rare diseases for a European representative survey: the BURQOL-RD study. Health Policy 2012; 108: 19-26.
23. Villaverde-Hueso A, Sanchez-Valle E, Alvarez E, Morant C, Carreira PE, Martin-Arribas MC, et al. Estimating the burden of scleroderma disease in Spain. J Rheumatol 2007; 34: 2236-42.
24. Lopez-Bastida J, Monton-Alvarez F, Serrano-Aguilar P, Perestelo-Perez L,. The social-economic costs in patients with ataxias cerebelosas in Spain. Mov Disord 2008; 23: 212-7.
25. Lopez-Bastida J, Perestelo-Perez L, Monton-Alvarez F, Serrano-Aguilar P, Alfonso-Sanchez JL,. Social economic costs and health-related quality of life in patients with amyotrophic lateral sclerosis in Spain. Amyotroph Lateral Scler 2008; 26: 1-7.
26. Brooks R,. EuroQol: the current state of play. Health Policy 1996; 37: 53-72.
27. Lopez-Bastida J, Oliva J, Perestelo-Perez L, Serrano-Aguilar P,. The economic costs and health-related quality of life of people with HIV and AIDS in the Canary Islands, Spain. BMC Health Serv Res 2009; 9: 55-62.
28. Drummond MF, O'Brien B, Stoddart GL, Torrance GW,. Methods for the economic evaluation of health care programmes. 2nd ed. Oxford: Oxford University Press; 1997.
29. Oblikue Consulting. Base de Datos de Costes Sanitarios eSALUD Barcelona. 2013. URL: http://www.oblikue.com/bddcostes.
30. CMP Medicom Editorial, SA. Vademecum Internacional España MediMedia-Medicom. 2013. URL: http://www.vademecum.es.
31. McDaid D,. Estimating the costs of informal care for people with Alzheimer's disease: methodological and practical challenges. Int J Geriatr Psychiatry 2001; 16: 400-5.
32. Van den Berg B, Brouwer W, Koopmanschap M,. Economic valuation of informal care: an overview of methods and applications. Eur J Health Econ 2004; 5: 36-45.
33. Instituto de Mayores y Servicios Sociales (IMSERSO). Las personas mayores en Espana: datos estadisticos estatales y por comunidades autonomas. 2008. URL: http://www.jubiladosugt.org/documentos/estudios-sociales/informe-personas- mayores-08-tomo-01.pdf.
34. Hodgson TA, Meiners MR,. Cost-of-illness methodology: a guide to assessment practices and procedures. Milbank Mem Fund Q 1982; 60: 429-91.
35. Instituto Nacional de Estadistica. Encuesta de estructura salarial 2002: resultados definitivos. 2004. URL: www.ine.es/prensa/np347.pdf.
36. Badia X, Roset M, Montserrat S, Herdman M, Segura A,. The Spanish version of EuroQol: a description and its applications. European quality of life scale. Med Clin 1999; 112: 79-85.
37. Dolan P,. Modeling valuations for EuroQol health states. Med Care 1997; 35: 1095-108.
38. Mahoney FI, Barthel DW,. Functional evaluation: the Barthel Index. Md State Med 1965; 14: 61-5.
39. Shah S, Vanclay F, Cooper B,. Improving the sensitivity of the Barthel Index for stroke rehabilitation. J Clin Epidemiol 1989; 42: 703-9.
40. Cid Ruzafa J, Damian Moreno J,. Valoracion de la discapacidad fisica: el Indice de Barthel. Rev Esp Salud Publica 1997; 71: 127-37.
41. Oliva-Moreno J, Lopez-Bastida J, Worbes-Cerezo M, Serrano-Aguilar P,. Health related quality of life of Canary Islands citizens: combining a general health survey and observational studies. BMC Public Health 2010; 10: 675-83.
42. Kanavos P, van den Aardweg S, Angelis A, Schurer W,. Socio-economic burden of rare diseases: methodological framework and empirical evidence. Internal report of BURQOL-RD. London: London School of Economics; 2011.
43. Lopez-Bastida J, Oliva Moreno J, Worbes Cerezo M, Perestelo Perez L, Serrano Aguilar P, Monton Alvarez F,. Social and economic costs and health-related quality of life in stroke survivors in the Canary Islands, Spain. BMC Health Serv Res 2012; 12: 315.
44. Oliva J, Vilaplana C, Osuna R,. The social value of informal care provided to elderly dependent people in Spain. Gac Sanit 2011; Suppl 2: 108-14.
45. Vilaplana Prieto C, Jimenez-Martin S, Garcia Gomez P,. Trade-off between formal and informal care in Europe. Gac Sanit 2011; Suppl 2: 115-24.
46. European Commission. The 2009 ageing report: economic and budgetary projections for the EU-27 member states (2008-2060). Brussels: EU Commission; 2009.
47. Ghatnekar O, Glenngard AH, Olofsson S, Persson U,. A literature review of instruments for measuring health-related quality of life in rare diseases: internal report of BURQOL-RD. Sweden: Swedish Institute for Health Economics; 2011.
48. Furst D, Khanna D, Matucci-Cerinic M, Clements P, Steen V, Pope J, et al. Systemic sclerosis: continuing progress in developing clinical measures of response. J Rheumatol 2007; 34: 1194-200.
49. Hu TW,. Perspectives: an international review of the national cost estimates of mental illness, 1990-2003. J Ment Health Policy Econ 2006; 9: 3-13.
50. Oliva J, Lopez-Bastida J, Montejo AL, Osuna R, Duque B,. The socioeconomic costs of mental illness in Spain. Eur J Health Econ 2009; 10: 361-9.