Developing a Reproductive Goals Decision Aid for Women with Cystic Fibrosis

July 7, 2022

Supporting patients as they consider their reproductive goals is a key component of comprehensive health care and it is particularly important for those with chronic health conditions. As more people with cystic fibrosis (CF) reach adulthood and consider their reproductive futures, gaps in their reproductive health needs are being identified. 

To help meet those needs, a group of researchers - including several from the University of Pittsburgh - published an article in the Journal of Patient Experience describing measures of stakeholder engagement in developing a reproductive goals decision aid for women with CF called MyVoice:CF

The conceptual model pairs reproductive autonomy and shared decision making; allowing users to clarify their goals and concerns independent of clinical encounters and supporting users as they answer questions that will ultimately facilitate patient-provider discussions about family planning. 

Stakeholder Engagement

To successfully develop this aid, authors recruited a panel comprised of CF providers, women’s health providers, and 14 adult women with CF. These individuals participated in regularly scheduled feedback sessions to discuss the aid’s content, language, and design. 

Authors evaluated the process of their engagement at the midpoint and end of the project through an anonymous survey. Since the process of stakeholder engagement is not typically evaluated in detail, authors hope their documentation will encourage implementation of a similar framework to improve the quality of other patient-centered research and the development of educational resources and interventions. 

Input on Development

Reflecting on the motivations of women with CF, the group agreed that the ideal resource should be web-based, enhance patient-provider communication and shared decision making, and provide users with relevant information and key questions to pose to their providers. 

They noted that the tool should be applicable to anyone with gestational capability, regardless of gender identity or that of any sexual partners. 

Stakeholder input helped decide the content, potential responses, and order of the questions. Research shows that beliefs about family planning exist on a spectrum, so the questions must help users consider their cognitive and affective thoughts. The group had concerns that the personal nature of the questions early on could make users uncomfortable, so all questions should have an “I’d prefer not to answer” option. 

As users progress through the tool, their answers and chosen resources appear on the Summary Page. This allows users to keep all information in one place and share with their health care provider if they choose. 

Stakeholder engagement was crucial to the development of MyVoice:CF, becoming more useful and inclusive from stakeholder feedback. If the tool is successfully used by women with CF and leads to improved understanding of family planning options, it could be broadened to other comprehensive care concerns among patients with CF or other populations of women with disease-specific concerns (including those with rheumatic diseases) related to reproductive health. 

UPMC and University of Pittsburgh Authors

Olivia Stransky, MPH
Research Coordinator 
Center for Innovative Research on Gender Health Equity

Mehret Birru Talabi, MD, PhD
Program Director, Optimizing Reproductive Health in People with Chronic Disease 
Center for Innovative Research on Gender Health Equity
Associate Program Director, UPMC Rheumatology Fellowship Training Program 

Traci Kazmerski, MD, MS
Program Director, Optimizing Reproductive Health in People with Chronic Disease 
Center for Innovative Research on Gender Health Equity
Assistant Professor, Department of Pediatrics 

See the full list of authors at the reference below.

Reference

Stransky OM, Pam M, Ladores SL, et al. Engaging Stakeholders in the Development of a Reproductive Goals Decision AID for Women with Cystic Fibrosis. J Patient Exp. 2022;9:23743735221077527. Published 2022 Feb 1. doi:10.1177/23743735221077527