Traci M Kazmerski1, Olga V Prushinskaya2, Kelsey Hill3, Eliza Nelson2, Jessica Leonard2, Kelly Mogren2, Sarah A B Pitts4, Julia Roboff2, Ahmet Uluer2, S Jean Emans4, Elizabeth Miller5, Gregory S Sawicki2. 1. Division of Respiratory Diseases, Department of Medicine (TM Kazmerski, OV Prushinskaya, E Nelson, J Leonard, K Mogren, J Roboff, A Uluer, and GS Sawicki); Institute for Healthcare Improvement (TM Kazmerski), Cambridge, Mass. Electronic address: Traci.Kazmerski@chp.edu. 2. Division of Respiratory Diseases, Department of Medicine (TM Kazmerski, OV Prushinskaya, E Nelson, J Leonard, K Mogren, J Roboff, A Uluer, and GS Sawicki). 3. Division of Child and Adolescent Psychiatry, Department of Psychiatry, Columbia University Medical Center (K Hill), New York, NY. 4. Division of Adolescent/Young Adult Medicine, Department of Medicine (SAB Pitts and SJ Emans), Boston Children's Hospital, and Department of Pediatrics, Harvard Medical School (SAB Pitts and SJ Emans), Boston, Mass. 5. Division of Adolescent and Young Adult Medicine, UPMC Children's Hospital of Pittsburgh, and Department of Pediatrics and Center for Women's Health Research and Innovation, University of Pittsburgh School of Medicine (E Miller), Pittsburgh, Pa.
Abstract
OBJECTIVE: Adolescent and young adult (AYA) women with pediatric-onset chronic diseases, such as cystic fibrosis (CF), face disease-specific sexual and reproductive health (SRH) concerns. Using concept mapping (CM), this study aimed to identify the SRH topics and outcomes valued by AYA women with CF and their parents. METHODS: Women with CF who were 13 to 30years of age and parents of 13- to 30-year-old daughters with CF participated in an online CM study. Participants individually brainstormed, rated, and sorted SRH topics important for AYA women with CF. Using multidimensional scaling, hierarchical cluster analyses, and t tests to assess rating differences, multidisciplinary stakeholders interpreted results during in-person meetings. RESULTS: Twenty-four participants (13 AYAs and 11 parents) generated 109 statements around SRH in CF; 88% completed rating and sorting. Sixteen stakeholders named 6 main clusters of concepts: fertility and pregnancy, deciding to have children, birth control, navigating life, sex, and gynecologic concerns. Participants rated birth control as highest in importance for adolescent women (mean = 3.9 ± 0.1 on a 5-point scale) and fertility and pregnancy as highest for young adult women (mean = 4.2 ± 0.04). Parents provided higher importance ratings for all clusters than patient participants. Stakeholders identified patient-centered outcomes for each cluster and focused on how to improve SRH knowledge, decision making, and patient-provider communication in the subspecialty setting. CONCLUSIONS: Eliciting patient-centered outcomes using CM can inform improvements in the care of AYAs with pediatric-onset chronic diseases. The SRH topics and patient-centered outcomes identified in this study should inform enhancements to comprehensive clinical care delivery for these populations.
OBJECTIVE: Adolescent and young adult (AYA) women with pediatric-onset chronic diseases, such as cystic fibrosis (CF), face disease-specific sexual and reproductive health (SRH) concerns. Using concept mapping (CM), this study aimed to identify the SRH topics and outcomes valued by AYA women with CF and their parents. METHODS:Women with CF who were 13 to 30years of age and parents of 13- to 30-year-old daughters with CF participated in an online CM study. Participants individually brainstormed, rated, and sorted SRH topics important for AYA women with CF. Using multidimensional scaling, hierarchical cluster analyses, and t tests to assess rating differences, multidisciplinary stakeholders interpreted results during in-person meetings. RESULTS: Twenty-four participants (13 AYAs and 11 parents) generated 109 statements around SRH in CF; 88% completed rating and sorting. Sixteen stakeholders named 6 main clusters of concepts: fertility and pregnancy, deciding to have children, birth control, navigating life, sex, and gynecologic concerns. Participants rated birth control as highest in importance for adolescent women (mean = 3.9 ± 0.1 on a 5-point scale) and fertility and pregnancy as highest for young adult women (mean = 4.2 ± 0.04). Parents provided higher importance ratings for all clusters than patientparticipants. Stakeholders identified patient-centered outcomes for each cluster and focused on how to improve SRH knowledge, decision making, and patient-provider communication in the subspecialty setting. CONCLUSIONS: Eliciting patient-centered outcomes using CM can inform improvements in the care of AYAs with pediatric-onset chronic diseases. The SRH topics and patient-centered outcomes identified in this study should inform enhancements to comprehensive clinical care delivery for these populations.
Authors: Olivia M Stransky; Molly Pam; Sigrid L Ladores; Mehret Birru Talabi; Sonya Borrero; Emily M Godfrey; Andrea H Roe; Gregory S Sawicki; Lisa C Zuckerwise; Sheila Mody; Laura Mentch; Ashley Deal; Raelynn O'Leary; Jennifer L Taylor-Cousar; Raksha Jain; Traci M Kazmerski Journal: J Patient Exp Date: 2022-02-01