Service provision of non-invasive prenatal testing for Down syndrome in public and private healthcare sectors: a qualitative study with obstetric providers

Olivia Miu Yung Ngan,Huso Yi,Shenaz Ahmed

doi:10.1186/s12913-018-3540-9

Olivia Miu Yung Ngan, Huso Yi + Show 1 more

Open Access

https://doi.org/10.1186/s12913-018-3540-9

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Abstract

BackgroundCell-free fetal DNA sequencing based non-invasive prenatal testing (NIPT) for Down syndrome (DS) has become widely available. In Hong Kong, obstetric providers in the public sector refer women identified at high risk of having a child with Down syndrome to obstetric providers in the private sector for NIPT. Little is known about how the NIPT has been adopted in the public sector where DS screening is provided for free of charge. The study aimed to identify the factors influencing providers’ role enactment, such as consultation and referral, in the service provision of NIPT for DS in public and private healthcare sectors.MethodsIn-depth interviews were conducted with 20 obstetric providers offering NIPT in Hong Kong. Thematic narrative analysis was used to identify (i) the factors considered by participants when referring women for NIPT for Down syndrome in public and private healthcare sectors and (ii) their perceptions of the need to integrate NIPT into the current public antenatal service.ResultsParticipants raised concerns about the lack of transparent referral guideline between public and private sectors for NIPT. Public obstetric providers reported little obligation to provide women with much information about risks and benefits of NIPT as it was not provided by public sectors. Some private providers assumed that women referred from the public sector had already received sufficient information about NIPT. The providers were also concerned about potential application of NIPT for further detection without regulation.ConclusionsAlthough the providers had good knowledge of clinical advantages of NIPT over conventional screening, they were uncertain about how to introduce NIPT to women. Guidelines are necessary to enable better coordination of public and private sectors services to enable women to make informed choices about the uptake of NIPT.

Highlights

Cell-free fetal DNA sequencing based non-invasive prenatal testing (NIPT) for Down syndrome (DS) has become widely available
We have identified four major thematic categories following analysis: (1) perceptions of information to facilitate women’s decisions about Non-invasive prenatal testing (NIPT); (2) perceptions of clinical guidance needed on referral for NIPT; (3) private providers’ assumptions about the provision of public pre-test information for NIPT; and (4) perceptions of equitable access to NIPT
Perceptions of information to facilitate women’s decisions about NIPT In the consultation on prenatal screening, the obstetric providers said that they mostly focused on clinical and procedural aspects of testing. They did not discuss the options available after screening such as termination of pregnancy (TOP) and health conditions of the affected unborn baby, which they consider as topics of pre-counselling for invasive prenatal diagnoses (IPD)

Summary

Introduction

Cell-free fetal DNA sequencing based non-invasive prenatal testing (NIPT) for Down syndrome (DS) has become widely available. Non-invasive prenatal testing (NIPT) based on sequencing cell-free fetal DNA in maternal plasma [1] has marked increase in the accuracy of screening for Down Syndrome (DS) in antenatal care settings. Report little opportunity to discuss NIPT with obstetric providers and report layman resources (e.g., press media, pamphlets by testing companies) as more useful [7]. These resources provide selective information based on commercial interests and did not always meet clinical and ethical standards [14]. The literature of clinical use of NIPT highlighted the critical role by obstetric providers to ensure women receive accurate information before test uptake

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