Caution counselled on expanding ‘heel-prick test’ for newborns

Any expansion of the heel-prick test for newborn babies must not jeopardise existing operations, the health watchdog has said.

Newborn bloodspot screening, also referred to as the heel-prick test, is conducted within the first 72 to 120 hours of life. The test scans for eight conditions and each year approximately 110 babies are identified with one of these ailments.

The Health Information and Quality Authority (Hiqa) has said efforts should focus on safeguarding the existing national newborn screening process and public confidence regardless of “direction and extent of expansion” of the programme.

Hiqa has published a report on approaches for considering expansion of newborn bloodspot screening programmes.

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The report was provided to the National Screening Advisory Committee to help inform development of their processes for assessment of conditions being considered for inclusion in Ireland’s National Newborn Bloodspot Screening Programme .

The programme provides newborn bloodspot testing in the early hours of life and identification of conditions that can affect infants.Moreover, last year the committee recommended adding a ninth condition and following approval of this recommendation by Minister for Health Simon Donnelly the Health Service Executive has been arranging its inclusion.

The report notes that when considering expansion of a screening programme important ethical, legal and social implications must be taken into account. These include perspectives of a broad range of people involved, such as the child, their family, scientists, healthcare professionals and public health professionals.

Furthermore, resources required to expand the programme should be considered at an early stage, it said.

Safeguarding existing programme

Hiqa has recommended that a structured approach to each aspect of policymaking on the topic should be prepared to ensure consistency and transparency into the future.

“Regardless of the direction and extent of expansion of the national NBS [newborn bloodspot screening] programme, efforts should be focused on protecting the existing screening processes in place, and the public confidence therein; expansion must not jeopardise existing operations,” the report notes.

“International experience of large-scale expansion suggests that rapid implementation efforts and or under resourcing of implementation can result in negative consequences such as high numbers of false positives [and the harmful effects caused by this] and insufficient follow-up of patients diagnosed with a screen-detected condition.”

Máirín Ryan, Hiqa’s deputy chief executive and director of health technology assessment, said the current newborn screening programme is “highly successful” with consistently high uptake rates, estimated at about 99.9 per cent.

“In considering further expansion of the programme, it is vital that the existing processes are protected and maintained and that any expansion of the programme is preceded by clearly defined and transparent decision making to ensure ongoing trust and confidence in the programme,” said Dr Ryan.

“International screening advisory groups are increasingly recognising the importance of a ‘life-cycle’ approach to making recommendations on newborn bloodspot screening. This includes taking a thorough look at the practicalities of adding a new condition to the programme and making sure there is a long-term plan for the success of the programme, including its evaluation.”