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Survey of information resources on newborn blood spot screening for parents and health professionals: a systematic review

What did we want to know?

What information is available for parents and health professionals in advance of newborn blood spot screening? How well does this information match the quality criteria available from the DISCERN tool for appraising information for treatment choices and the National Screening Committee criteria for mounting a screening programme.

Who wants to know?

Policy makers, clinicians, parents of newborn babies.

What did we find?

Most leaflets provided information on their purpose, the aims of screening, the conditions screened for, the screening procedure, the need for follow-up to confirm positive screening results, and treatment for the conditions. The appraisers, however, were generous when using the appraisal tool. In some cases the information provided in the leaflets barely met the requirement. Whilst most leaflets mentioned the benefits of screening, few addressed the issue of the possible harms, particularly false results, indicated that screening was a choice, discussed alternatives to screening, or gave information about when and how parents would receive results. Fewer still provided any sources of evidence for the information provided or how the information was developed.

What are the implications?

There is a need to develop high quality information for parents and health professionals about newborn screening.

We recommend:

  • Primary research about parents’ and professionals’ experiences and views of screening and about the details of communication practice: who should provide any information, what, how, when, or where. Specifically, more research is needed about: consent to screen using DNA; consent to receive results; and parental response to false-negative results, false-positive results and carrier results.
  • A survey of newborn screening services, in the UK and elsewhere, for their resources and policies and to compare these with the challenges to communication noted in this review in order to identify good practice.

How did we get these results?

An appraisal tool for patient information about treatment choices (DISCERN) was combined with the National Screening Committee criteria for screening and applied to 106 leaflets available for parents and health professionals found in the UK and on English language web sites internationally.

This report should be cited as: Hargreaves K, Stewart R, Oliver S (2005) Survey of information resources on newborn blood spot screening for parents and health professionals: a systematic review. London: Social Science Research Unit, Institute of Education, University of London.

  
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