Psychological measures of patient’s decision-making for prenatal genetic testing

Abstract

Objective

To use a questionnaire to determine the levels of maternal decision-related distress, clarity of the pros and cons, and certainty when considering prenatal genetic diagnostic testing; and to assess the relationship between these constructs and patient characteristics.

Method

Cross-sectional study. Voluntary, anonymous questionnaires distributed 2017–2019 to women referred for invasive prenatal genetic testing. Excluded: English or Spanish illiterate. Maternal characteristics were collected. Questions evaluated distress, decisional certainty, and decisional clarity on a 5-point Likert scale (range: 0 = low/uncertain/unclear to 4 = high/certain/clear). Analysis: non-parametric Kruskal–Wallis, correlation statistics, and ANOVA.

Results

Forty-four female patients completed it. Most were married, white, Catholic, and multiparous. 58% had already made a testing decision. Patients expressed low distress levels (mean 1.18 ± 0.80) and expressed high decisional certainty (mean 3.28 ± 0.76) and clarity (mean 3.30 ± 0.99). Decisional certainty and clarity were positively correlated (r = 0.47, p < .01), whereas distress was negatively correlated with decisional certainty (r = −0.8136, p < .0005) and decisional clarity (r = −0.49, p = .007). No significant differences by religion or parity. Greater distress (p < .05) and less decisional clarity (p = .07) occurred between those still debating testing vs those who had decided.

Conclusions

Higher maternal distress scores were associated with lower decisional certainty and decisional clarity in women considering prenatal genetic testing.

Keywords:

• Prenatal genetic testing;
• amniocentesis;
• screening;
• patient understanding

Acknowledgements

We acknowledge Drs. Marci Lobel (Stony Brook University) and Lisa Rubin (New School for Social Research) for their work on the development of these instruments. We thank Giselle Gerardi MSN, RN, RNC-OB and Cecelia Avila MD, for translating the instruments into Spanish.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The study was approved by the Institutional Review Board of Stony Brook University (#2016-3406) and was performed in accordance with the Declaration of Helsinki.

Data and Materials are available by request from authors.