Feasibility Testing of a Web-Based Reproductive Decision Support Tool for Cystic Fibrosis

Traci M Kazmerski; Olivia M Stransky; Catherine E Wright; Maya Albanowski; Joseph M Pilewski; Mehret Birru Talabi; Lisa S Callegari; Judy C Chang; Kaleab Z Abebe; Elizabeth Miller; Ashley Deal; Raelynn O'Leary; Sonya Borrero

doi:10.1016/j.jcf.2023.10.003

Feasibility Testing of a Web-Based Reproductive Decision Support Tool for Cystic Fibrosis

J Cyst Fibros. 2023 Oct 11:S1569-1993(23)00924-4. doi: 10.1016/j.jcf.2023.10.003. Online ahead of print.

Affiliations

¹ University of Pittsburgh School of Medicine, Pittsburgh, PA; Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, PA. Electronic address: traci.kazmerski@chp.edu.
² University of Pittsburgh School of Medicine, Pittsburgh, PA; Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, PA.
³ Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, PA.
⁴ University of Pittsburgh School of Medicine, Pittsburgh, PA.
⁵ Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, PA; Univ of Washington, Seattle, WA.
⁶ Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, PA; Carnegie Mellon University, Pittsburgh, PA.

PMID: 37833123
DOI: 10.1016/j.jcf.2023.10.003

Abstract

Background: People with cystic fibrosis (CF) are increasingly considering their reproductive goals. We developed MyVoice:CF, a web-based patient-centered reproductive decision support tool and assessed its implementation in CF care.

Methods: We conducted a feasibility trial among 18-44-year-old women with CF and multidisciplinary CF providers. Prior to CF clinic visit, patient participants completed a baseline survey, used MyVoice:CF, and assessed acceptability, appropriateness, and usability. After clinic, participants rated impact on reproductive health communication. At 3 months post-use, participants assessed impact on reproductive health outcomes. Provider participants completed a survey and focus group regarding MyVoice:CF feasibility/implementation. We assessed outcomes descriptively. We compared MyVoice:CF's impact on outcomes from baseline to follow-up using McNemar's and Wilcoxon signed rank tests as appropriate.

Results: Forty-three patient participants completed baseline surveys and 40 rated MyVoice:CF's feasibility; 10 providers participated. Patient participants rated MyVoice:CF's acceptability as 4.48±0.50 out of 5, appropriateness as 4.61±0.48 out of 5, and usability as 82.25±11.02 ('A'/excellent). After MyVoice:CF use, participants reported improved reproductive health communication self-efficacy vs. baseline (3.54±1.17vs.3.95±0.93, p<0.001). At baseline, 36% of participants reported any discussion of reproductive goals/plans with their CF team in the past year compared to 59% after first visit post-MyVoice:CF use (p=0.049). Provider participants similarly rated MyVoice:CF as feasible and reported no negative impacts on clinic flow after implementation.

Conclusions: MyVoice:CF is acceptable, appropriate, and usable for those with CF. Preliminary effectiveness evaluation suggests that MyVoice:CF improves self-efficacy in and frequency of reproductive health communication. Future studies should further assess MyVoice:CF's impact on reproductive health communication and outcomes.

Keywords: Cystic fibrosis; decision support tool; feasibility; patient-provider communication self-efficacy; reproductive health.