Engaging Stakeholders in the Development of a Reproductive Goals Decision AID for Women with Cystic Fibrosis

Abstract

Objective: More people with cystic fibrosis (pwCF) are reaching adulthood and considering their reproductive futures. Unfortunately, many pwCF report gaps in their reproductive healthcare. We describe measures of stakeholder engagement in developing a reproductive goals decision aid for women with CF called MyVoice:CF. Methods: Stakeholders reviewed the content, design, and usability of the tool, which was informed by prior research related to CF family planning experiences and preferences as well as a conceptual understanding of reproductive decision making. We evaluated stakeholder engagement via process measures and outcomes of stakeholder involvement. We collected data via recorded stakeholder recommendations and surveys. Results: Fourteen stakeholders participated and the majority described their role on the project as “collaborator”, “advisor”, or “expert.” Most felt their expectations for the project were met or exceeded, that they had contributed significantly, and that they received sufficient and frequent information about the process. All stakeholders provided recommen­dations and clarified aims for a CF-specific family planning tool, including its content and focus on facilitating shared decision making. Discussion: Utilizing meaningful stakeholder contributions, we developed MyVoice:CF, a novel web-based decision aid to help women with CF engage in shared decision-making regarding their reproductive goals. Practical Value: Our findings from working with stakeholders for MyVoice:CF indicate that disease-specific reproductive health resources can and should be designed with input from individuals in the relevant communities.

Pregnancy experience in the setting of cystic fibrosis: A systematic review and thematic synthesis

“…The relationship between the different ways and the providers (e.g., physician vs. other PwCF) involved in the information supply process and their integration seems to be fundamental to empower the subjects affected by CF in the decision‐making process: this involves the analysis of several characteristics both intrinsic and extrinsic, such as the risks for the mother and the child, the environmental support and the health status at the baseline. Our results are consistent with a recent research on the need for a decision support in relation to pregnancy for PwCF; for instance, Stransky et al (2022) have suggested a novel web‐based, patient‐centred reproductive goals decision aid for women with CF (called MyVoice:CF) to understanding options and a decreased decisional conflict regarding reproductive goals. For PwCF, coping with pregnancy is a challenging experience, where they have to mediate between the emotional response to needs, desires, expectations, concerns and feelings and the limitations imposed by the chronic health condition.…”

A Framework for Femtech: Guiding Principles for Developing Digital Reproductive Health Tools in the United States

“…We developed two decisions aids (see Figure 4)-MyVoice:Rheum and MyVoice:CF-to help women (1) conceptualize the benefits and potential health risks of parenting, pregnancy, and/or pregnancy avoidance in the context of their conditions; (2) recognize and refine their reproductive goals; and (3) communicate these goals to their health care teams. Tool development centered on engagement with patients, clinicians, and reproductive health specialists to ensure that the content was accurate (Principle 1: Interdisciplinary stakeholder-inclusive teams), reflected patients' specific preferences and information priorities (Principle 2: Supporting a patient-centered approach), and helped to prepare patients for shared reproductive decision-making with clinicians in ways that enable them to receive the reproductive health care that meets their needs and preferences (Principle 3: Advancing reproductive health equity) [61,62]. Although the content of MyVoice:Rheum and MyVoice:CF is different and disease-specific, we developed the tools in tandem to maximize efficiencies related to time and expense.…”

The modern landscape of fertility, pregnancy, and parenthood in people with cystic fibrosis

“…Interventions to support people with cystic fibrosis achieve their reproductive goals can be focused on patient-facing, provider-facing, or systems-based change. Recently, a novel patient-facing, web-based reproductive decision support tool called MyVoice: CF to assist women with cystic fibrosis consider their reproductive futures and family planning needs was found to be highly acceptable, appropriate, and usable for a cystic fibrosis population [65,66]. Provider training in relationship-centered communication has also been found to be feasible for cystic fibrosis providers and may be adapted to improve family planning discussions [67].…”