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

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Abstract

Background

The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states.

Methods

We conducted a cross-sectional study of patients with EB from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden and the United Kingdom. Data on demographic characteristics, health 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 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from €9509 to €49,233 (reference year 2012). Estimated direct healthcare costs ranged from €419 to €10,688; direct non-healthcare costs ranged from €7449 to €37,451 and labour productivity losses ranged from €0 to €7259. The average annual cost per patient across all countries was estimated at €31,390, out of which €5646 accounted for direct health costs (18.0 %), €23,483 accounted for direct non-healthcare costs (74.8 %), and €2261 accounted for indirect costs (7.2 %). Costs were shown to vary across patients with different disability but also between children and adults. The mean EQ-5D score for adult EB patients was estimated at between 0.49 and 0.71 and the mean EQ-5D visual analogue scale score was estimated at between 62 and 77.

Conclusion

In addition to its negative impact on patient HRQOL, our study indicates the substantial social/economic burden of EB in Europe, attributable mostly to high direct non-healthcare costs.

Electronic supplementary material

The online version of this article (doi:10.1007/s10198-016-0783-4) contains supplementary material, which is available to authorized users.

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Most cited references 30

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The Barthel Index is a valid measure of disability. In this study we investigated the reliability of four different methods of obtaining the score in 25 patients: self-report, asking a trained nurse who had worked with the patient for at least one shift, and separate testing by two skilled observers within 72 hours of admission. Analysis of total (summed) scores revealed a close correlation between all four methods: a difference of 4/20 points was likely to reflect a genuine difference. In individual items, most disagreement was minor and involved the definition of middle grades. Asking an informed nurse or relative was as reliable as testing, and is quicker.

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The Barthel Index is considered to be the best of the ADL measurement scales. However, there are some scales that are more sensitive to small changes in functional independence than the Barthel Index. The sensitivity of the Barthel Index can be improved by expanding the number of categories used to record improvement in each ADL function. Suggested changes to the scoring of the Barthel Index, and guidelines for determining the level of independence are presented. These modifications and guidelines were applied in the assessment of 258 first stroke patients referred for inpatient comprehensive rehabilitation in Brisbane, Australia during 1984 calendar year. The modified scoring of the Barthel Index achieved greater sensitivity and improved reliability than the original version, without causing additional difficulty or affecting the implementation time. The internal consistency reliability coefficient for the modified scoring of the Barthel Index was 0.90, compared to 0.87 for the original scoring.

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The classification of inherited epidermolysis bullosa (EB): Report of the Third International Consensus Meeting on Diagnosis and Classification of EB.

Jo-David Fine, Robin Eady, Eugene A. Bauer … (2008)

Since publication in 2000 of the Second International Consensus Report on Diagnosis and Classification of Epidermolysis Bullosa, many advances have been made to our understanding of this group of diseases, both clinically and molecularly. At the same time, new epidermolysis bullosa (EB) subtypes have been described and similarities with some other diseases have been identified. We sought to arrive at a new consensus of the classification of EB subtypes. We now present a revised classification system that takes into account the new advances, as well as encompassing other inherited diseases that should also be included within the EB spectrum, based on the presence of blistering and mechanical fragility. Current recommendations are made on the use of specific diagnostic tests, with updates on the findings known to occur within each of the major EB subtypes. Electronic links are also provided to informational and laboratory resources of particular benefit to clinicians and their patients. As more becomes known about this disease, future modifications may be needed. The classification system has been designed with sufficient flexibility for these modifications. This revised classification system should assist clinicians in accurately diagnosing and subclassifying patients with EB.

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Author and article information

Contributors

Aris Angelis: a.n.angelis@lse.ac.uk

Journal

Journal ID (nlm-ta): Eur J Health Econ

Journal ID (iso-abbrev): Eur J Health Econ

Title: The European Journal of Health Economics

Publisher: Springer Berlin Heidelberg (Berlin/Heidelberg )

ISSN (Print): 1618-7598

ISSN (Electronic): 1618-7601

Publication date (Electronic): 23 April 2016

Publication date PMC-release: 23 April 2016

Publication date (Print): 2016

Volume: 17

Issue: Suppl 1

Pages: 31-42

Affiliations

[1 ]Department of Social Policy and LSE Health, London School of Economics and Political Science, London, UK

[2 ]University of Castilla-La Mancha, Talavera de la Reina, Toledo Spain

[3 ]Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Madrid, Spain

[4 ]Fundación Canaria de Investigación Sanitaria (FUNCANIS), Las Palmas de Gran Canaria, Spain

[5 ]University of Castilla-La Mancha, Toledo, Spain

[6 ]Evaluation and Planning Service at Canary Islands Health Service, Santa Cruz de Tenerife, Spain

[7 ]Institute of Rare Diseases Research, ISCIII, SpainRDR and CIBERER, Madrid, Spain

[8 ]National Center for Rare Diseases, Istituto superiore di sanità (ISS), Rome, Italy

[9 ]Centro di Ricerche Cliniche per Malattie Rare Aldo e Cele Daccò, Istituto di Ricerche Farmacologiche Mario Negri, Ranica (Bergamo), Italy

[10 ]Institute of Rare Diseases, Plovdiv, Bulgaria

[11 ]Department of Social Medicine and Public Health, Faculty of Public Health, Medical University of Plovdiv, Plovdiv, Bulgaria

[12 ]Department of Health Economics, Corvinus University of Budapest, Budapest, Hungary

[13 ]Centre for Health Economics Research Hannover (CHERH), Leibniz Universität Hannover, Hannover, Germany

[14 ]URC Eco Ile de France, AP-HP, Paris, France

[15 ]Université Paris Diderot, Sorbonne Paris Cité, ECEVE, UMRS 1123, Paris, France

[16 ]INSERM, ECEVE, U1123, Paris, France

[17 ]The Swedish Institute for Health Economics, Lund, Sweden

[18 ]Centre for Research on Health and Social Care Management (CERGAS), Bocconi University, Milan, Italy

Article

Publisher ID: 783

DOI: 10.1007/s10198-016-0783-4

PMC ID: 4869727

PubMed ID: 27107597

SO-VID: 3245bcd8-cf71-4111-8a1a-79bda2cf06d0

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

History

Date received : 4 May 2015

Date accepted : 13 January 2016

Custom metadata

ScienceOpen disciplines: Economics of health & social care

Keywords: epidermolysis bullosa,cost-of-illness,social cost,health-related quality of life,european union,rare disease,i1

Data availability:

ScienceOpen disciplines: Economics of health & social care

Keywords: epidermolysis bullosa, cost-of-illness, social cost, health-related quality of life, european union, rare disease, i1

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

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Abstract

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Conclusion

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AboutScience

Most cited references 30

The Barthel ADL Index: a reliability study.

Improving the sensitivity of the Barthel Index for stroke rehabilitation.

The classification of inherited epidermolysis bullosa (EB): Report of the Third International Consensus Meeting on Diagnosis and Classification of EB.

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Cited by 35

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