Should Clinicians Leave “Expanded” Carrier Screening Decisions to Patients?

Fakih, A; Spector‐Bagdady, Kayte

doi:10.1001/amajethics.2019.858

Cited by 4 publications

(1 citation statement)

References 19 publications

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“…[42][43][44][45] Other studies have demonstrated de cits in patient knowledge and decision-making for CS. 20,38,[46][47][48][49] While some of these are due to patient-related factors, others are due to healthcare-related factors, including impediments in provider knowledge and adherence to evidence-based guidelines about their use. [50][51][52][53][54][55][56][57] Our ndings indicate that it will require signi cant time and effort for healthcare providers to overcome the patients' de cits in knowledge.…”

Section: Discussionmentioning

confidence: 99%

Decision-Making for Prenatal Genetic Screening: How will Pregnant Women Navigate a Growing Number of Aneuploidy and Carrier Screening Options?

Farrell¹,

Pierce²,

Collart³

et al. 2021

Preprint

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Background: Prenatal genetic screens, including carrier screening (CS) and aneuploidy screening (AS), comprise an important component of reproductive healthcare delivery. Clinical practice guidelines emphasize the importance of informed decision-making and patient’s preferences regarding the use of these screens. Yet, it is unclear how to achieve this ideal as prenatal genetic screening options rapidly become more complex and increasingly available to patients. With increased complexity and availability of reproductive testing options, decision-support strategies are critical to prepare patients to consider AS and/or CS.Methods: A self-administered survey evaluated knowledge and decision-making preferences for expanded carrier (CS) and aneuploidy (AS) prenatal screening. The survey was administered to participants before their first prenatal visit to assess baseline decision-making needs and preference at the initiation of prenatal care. Analysis was approached as a descriptive process. Results: Participants had similar familiarity with the concepts associated with AS compared to CS; mean knowledge scores for CS was 0.59 [possible range 0.00 to 1.00] and 0.55 for AS. Participants reported preferences to learn about a range of conditions, including those with severe or mild impact, childhood-onset, and adult-onset. Decision-making preference with respect to learning about the associated disease phenotypes for the contained on AS and CS panel shifted with the complexity of the panel, with a greater preference to learn about conditions post-test compared pre-test education as panels increased from 5-100 conditions. Conclusion: Patients’ baseline knowledge of prenatal genetic screens coupled with evolving decision-making preferences presents challenges for the delivery of prenatal genetic screens. This calls for the development and implementation of innovative approaches to support pregnant patients’ decision-making commensurate with advances in prenatal genomics.

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Section: Discussionmentioning

confidence: 99%

Decision-Making for Prenatal Genetic Screening: How will Pregnant Women Navigate a Growing Number of Aneuploidy and Carrier Screening Options?

Farrell¹,

Pierce²,

Collart³

et al. 2021

Preprint

View full text Add to dashboard Cite

show abstract

Exploring the use of a comic for education about expanded carrier screening among a diverse group of mothers

Rothwell

Cheek-O'Donnell

Johnson

et al. 2021

Journal of Communication in Healthcare

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Decision-making for prenatal genetic screening: how will pregnant women navigate a growing number of aneuploidy and carrier screening options?

Farrell

Pierce

Collart

et al. 2021

BMC Pregnancy Childbirth

View full text Add to dashboard Cite

Background Prenatal genetic screens, including carrier screening (CS) and aneuploidy screening (AS), comprise an important component of reproductive healthcare delivery. Clinical practice guidelines emphasize the importance of informed decision-making and patient’s preferences regarding the use of these screens. Yet, it is unclear how to achieve this ideal as prenatal genetic screening options rapidly become more complex and increasingly available to patients. With increased complexity and availability of reproductive testing options, decision-support strategies are critical to prepare patients to consider AS and/or CS. Methods A self-administered survey evaluated knowledge and decision-making preferences for expanded carrier (CS) and aneuploidy (AS) prenatal screening. The survey was administered to participants before their first prenatal visit to assess baseline decision-making needs and preference at the initiation of prenatal care. Analysis was approached as a descriptive process. Results Participants had similar familiarity with the concepts associated with AS compared to CS; mean knowledge scores for CS was 0.59 [possible range 0.00 to 1.00] and 0.55 for AS. Participants reported preferences to learn about a range of conditions, including those with severe or mild impact, childhood-onset, and adult-onset. Decision-making preference with respect to learning about the associated disease phenotypes for the contained on AS and CS panel shifted with the complexity of the panel, with a greater preference to learn about conditions post-test compared pre-test education as panels increased from 5 to 100 conditions. Conclusion Patients’ baseline knowledge of prenatal genetic screens coupled with evolving decision-making preferences presents challenges for the delivery of prenatal genetic screens. This calls for the development and implementation of innovative approaches to support pregnant patients’ decision-making commensurate with advances in prenatal genomics.

show abstract

Should Clinicians Leave “Expanded” Carrier Screening Decisions to Patients?

Cited by 4 publications

References 19 publications

Decision-Making for Prenatal Genetic Screening: How will Pregnant Women Navigate a Growing Number of Aneuploidy and Carrier Screening Options?

Decision-Making for Prenatal Genetic Screening: How will Pregnant Women Navigate a Growing Number of Aneuploidy and Carrier Screening Options?

Exploring the use of a comic for education about expanded carrier screening among a diverse group of mothers

Decision-making for prenatal genetic screening: how will pregnant women navigate a growing number of aneuploidy and carrier screening options?

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