Graduation Date

Spring 5-7-2022

Document Type

Capstone

Degree Name

Master’s of Genetic Counseling

Department

Genetic Counseling

First Advisor

Sara Fisher

Second Advisor

Kristen Fishler Malone

Abstract

Objective: Previous studies suggest carrier screening is not consistently offered to all patients meeting national guidelines. Introducing basic carrier screening options prior to an appointment could potentially decrease the time providers spend discussing this screening, while increasing patient awareness. Our goal was to create an educational handout that was a source of baseline knowledge on carrier screening, accessible, and non-directive.

Methodology: We developed this educational handout in four phases: preliminary research, resource development, stakeholder feedback, and revision. Preliminary research involved compiling existing guidelines published by professional organizations such as the American College of Obstetricians and Gynecologists, the American College of Medical Genetics, and others. Resource development was informed by preliminary research and recommendations on designing accessible and inclusive patient-facing materials. Stakeholder feedback was collected from patients in an obstetrician/gynecologist (OB/GYN) setting, one medical assistant/scheduler, an ultrasound technologist, and a pediatrician. A Likert scale from 1 (completely disagree) to 10 (completely agree) was used to gather feedback on five prompts: (1) This handout provides a basic overview of carrier screening, (2) this handout clearly describes the target population of carrier screening, (3) this handout explains the recommended timeline for carrier screening, (4) this handout answers the question “why would someone pursue carrier screening?” and (5) this handout represents carrier screening as recommended, yet not required. Revisions were made in response to stakeholder feedback, and a second round of pilot data was collected.

Results: Pilot data (n=8) collected before (n=3) and after (n=5) resource revisions assessed stakeholders’ perception of the handout’s utility. Post-revision responses (n=5) averaged 8 or higher across all questions. Open-ended requests for comments or suggestions on inclusivity and diverse representation of the handout yielded no reported concerns.

Conclusions: This resource communicates information about carrier screening. Pilot testing suggests this tool could increase awareness of carrier screening in OB/GYN populations.

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