Next Article in Journal
Geographical Distribution Patterns of Iodine in Drinking-Water and Its Associations with Geological Factors in Shandong Province, China
Previous Article in Journal
Range-Finding Risk Assessment of Inhalation Exposure to Nanodiamonds in a Laboratory Environment
Int. J. Environ. Res. Public Health 2014, 11(5), 5403-5430; doi:10.3390/ijerph110505403
Article

Funding Decisions for Newborn Screening: A Comparative Review of 22 Decision Processes in Europe

1,2,*  and 2,3
Received: 15 January 2014 / Revised: 29 April 2014 / Accepted: 9 May 2014 / Published: 19 May 2014
View Full-Text   |   Download PDF [255 KB, uploaded 19 June 2014]

Abstract

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.
Keywords: coverage; reimbursement; decision-making; internet survey; European Union; tandem mass spectronomy coverage; reimbursement; decision-making; internet survey; European Union; tandem mass spectronomy
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Share & Cite This Article

Further Mendeley | CiteULike
Export to BibTeX |
EndNote
MDPI and ACS Style

Fischer, K.E.; Rogowski, W.H. Funding Decisions for Newborn Screening: A Comparative Review of 22 Decision Processes in Europe. Int. J. Environ. Res. Public Health 2014, 11, 5403-5430.

View more citation formats

Related Articles

Article Metrics

For more information on the journal, click here

Comments

Cited By

[Return to top]
Int. J. Environ. Res. Public Health EISSN 1660-4601 Published by MDPI AG, Basel, Switzerland RSS E-Mail Table of Contents Alert