Delivering Positive Newborn Screening Results: Cost Analysis of Existing Practice versus Innovative, Co-Designed Strategies from the ReSPoND Study.

Francesco Fusco,Holly Chinnery,James R Bonham,Alan Simpson,Louise Moody,Stephen Morris,Jane Chudleigh,Kevin W Southern,Pru Holder,Ellinor K Olander

doi:10.3390/ijns8010019

Abstract

Although the communication pathways of Newborn Bloodspot Screening (NBS) are a delicate task, these pathways vary across different conditions and are often not evidence-based. The ReSPoND interventions were co-designed by healthcare professionals alongside parents who had received a positive NBS result for their child. To calculate the cost of these co-designed strategies and the existing communication pathways, we interviewed 71 members of the clinical and laboratory staff of the 13 English NBS laboratories in the English National Health Service. Therefore, a scenario analysis was used to compare the cost of the existing communication pathways to the co-designed strategies delivered by (i) home-visits and (ii) telecommunications. On average, the existing communication pathway cost £447.08 per infant (range: £237.12 to £628.51) or £234,872.75 (£3635.99 to £1,932,986.23) nationally. Implementing the new interventions relying on home-visits exclusively would cost on average £521.62 (£312.84 to £646.39) per infant and £297,816.03 (£4506.37 to £2,550,284.64) nationally, or £447.19 (£235.79 to £552.03) and £231,342.40 (£3923.7 to £1,922,192.22) if implemented via teleconsultations, respectively. The new strategies delivered are not likely to require additional resources compared with current practice. Further research is needed to investigate whether this investment represents good value for money for the NHS budget.

Highlights

IntroductionNewborn bloodspot screening (NBS) in England covers nine conditions: cystic fibrosis (CF); sickle cell disease (SCD); congenital hypothyroidism (CHT) and six inherited metabolic diseases (IMDs), including phenylketonuria (PKU); medium-chain acyl-CoA dehydrogenase deficiency (MCADD); maple syrup urine disease (MSUD); isovaleric acidaemia (IVA); glutaric aciduria type 1(GA1) and homocystinuria (HCU)
Public Health England (PHE) attempted to standardise the communication of positive Newborn Bloodspot Screening (NBS) results by producing a national guideline, there is high-variability in the standard communication strategies currently used in England—which makes a concise description of the standard pathways problematic [13]
Inappropriate, communication strategies for positive NBS results can have a detrimental impact on parental outcomes in the short-term and can have a long-term impact on children and families [3–7,20,21]

Summary

Introduction

Newborn bloodspot screening (NBS) in England covers nine conditions: cystic fibrosis (CF); sickle cell disease (SCD); congenital hypothyroidism (CHT) and six inherited metabolic diseases (IMDs), including phenylketonuria (PKU); medium-chain acyl-CoA dehydrogenase deficiency (MCADD); maple syrup urine disease (MSUD); isovaleric acidaemia (IVA); glutaric aciduria type 1(GA1) and homocystinuria (HCU). NBS aims to identify pre-symptomatic, affected babies, allowing for early initiation of treatment. Almost 10,000 parents are informed of their child’s positive NBS result at around 2–8 weeks after birth, depending on the condition.

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