Psychosocial consequences of communicating results of non-invasive prenatal testing to parents: an evidence map

ID: 

314

Session: 

Poster session 3

Date: 

Tuesday 18 September 2018 - 12:30 to 14:00

All authors in correct order:

Labonté V1, Meerpohl J1
1 Institute for Evidence in Medicine (for Cochrane Germany Foundation), Medical Center, Faculty of Medicine, University of Freiburg, Germany
Presenting author and contact person

Presenting author:

Valérie Labonté

Contact person:

Valérie Labonté
Joerg Meerpohl
Abstract text
Background: Since the early 2010s genomics-based non-invasive prenatal testing (NIPT) based on a blood sample from the mother is offered to expecting parents who have a risk for certain genetic anomalies such as Down syndrome. Compared to invasive prenatal testing-methods (e.g. amniocentesis), NIPT does not pose a risk of physical damage to either the mother or the unborn child. Only positive test results, i.e. that indicate a genetic anomaly, must then be confirmed with invasive methods because there is a small risk of false positive results. The possibility of NIPT might facilitate the decision for parents without elevated risk to use such testing. Testing the fetus for genetic anomalies and the possible decision for or against a having a child with a genetic anomaly can cause stress or anxiety and affect parents’ lives for years.

Objectives: To map the existing evidence on the psychosocial consequences of using NIPT to screen for Down syndrome and other aneuploidies that can currently be tested for non-invasively.

Methods: To map the existing evidence, we will develop comprehensive search strategies for the electronic databases MEDLINE, Web of Science, Cochrane Library, CINAHL, PSYNDEX and PsycINFO. Additionally, we will search the internet via Google and Google Scholar for further evidence. The results of the literature search will be charted regarding bibliographic and methodological details. For example, data on study design or type of outcomes will be evaluated in order to assess the quality of the study and its reporting. If applicable, data on psychosocial outcomes will be extracted and mapped in a user-friendly table or database. We will publish our evidence map in an open access journal, so that our results will be freely available.

Results: In a preliminary search, we identified several studies that reported psychological, social, or physical consequences of NIPT. Data abstraction, and analysis of findings is pending.

Conclusions: Not yet applicable.

Patient or healthcare consumer involvement: Mapping studies that analyzed such consequences and thereby identifying research gaps is one step towards enabling parents to make fully informed decisions for or against NIPT.

Relevance to patients and consumers: 

We plan to map evidence on the psychosocial health outcomes of people after non-invasive prenatal testing (NIPT). From the parents’ perspective it is important to also be aware of possible psychosocial consequences that may manifest long after a test result has been communicated. Having taken the decision to either live with a disabled child or terminate a pregnancy can cause stress or anxiety in parents and has the potential to seriously affect their lives for years. Mapping studies that analyzed such consequences and thereby identifying research gaps is one step towards enabling parents to make fully informed decisions for or against NIPT.