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Funding decisions for newborn screening: A comparative review of 22 decision processes in Europe.

Int. J. Environ. Res. Public Health 11, 5403-5430 (2014)
Verlagsversion Volltext DOI PMC
Open Access Gold
Creative Commons Lizenzvertrag
Decision-makers need to make choices to improve public health. Population-based newborn screening (NBS) is considered as one strategy to prevent adverse health outcomes and address rare disease patients’ needs. The aim of this study was to describe key characteristics of decisions for funding new NBS programmes in Europe. We analysed past decisions using a conceptual framework. It incorporates indicators that capture the steps of decision processes by health care payers. Based on an internet survey, we compared 22 decisions for which answers among two respondents were validated for each observation. The frequencies of indicators were calculated to elicit key characteristics. All decisions resulted in positive, mostly unrestricted funding. Stakeholder participation was diverse focusing on information provision or voting. Often, decisions were not fully transparent. Assessment of NBS technologies concentrated on expert opinion, literature review and rough cost estimates. Most important appraisal criteria were effectiveness (i.e., health gain from testing for the children being screened), disease severity and availability of treatments. Some common and diverging key characteristics were identified. Although no evidence of explicit healthcare rationing was found, processes may be improved in respect of transparency and scientific rigour of assessment.
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Publikationstyp Artikel: Journalartikel
Dokumenttyp Wissenschaftlicher Artikel
Schlagwörter coverage; reimbursement; decision-making; internet survey; European Union; tandem mass spectronomy; Technology-assessment; Coverage Decisions; Jungner Criteria; Genetic Tests; Health; Accountability; Framework; Ethics; Wilson; Cost
ISSN (print) / ISBN 1661-7827
e-ISSN 1660-4601
Zeitschrift International Journal of Environmental Research and Public Health
Quellenangaben Band: 11, Heft: 5, Seiten: 5403-5430 Artikelnummer: , Supplement: ,
Verlag MDPI
Verlagsort Basel, Switzerland