Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement.

Purpose: Stakeholder engagement, specifically integration of patient and family perspectives about what matters, is increasingly recognized as a critical component of patient-centered healthcare delivery. This study describes a structured approach to and evaluation of stakeholder engagement in the development of novel sexual and reproductive health (SRH) educational resources for adolescent and young adult (AYA) women with cystic fibrosis (CF).

Methods: Key stakeholders participated in a systematic series of steps to iteratively develop and adapt patient educational resources.

Sexual and Reproductive Health of Young Women With Cystic Fibrosis: A Concept Mapping Study.

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.

Perspectives of adolescent girls with cystic fibrosis and parents on disease-specific sexual and reproductive health education.

Introduction: Adolescent girls with cystic fibrosis (CF) face significant disease-specific sexual and reproductive health (SRH) concerns that are not typically addressed in routine clinical care. Additionally, there is a paucity of developmentally appropriate CF-specific SRH educational resources for this population. The goal of this study was to explore patient and parent attitudes toward SRH educational resources for adolescent girls with CF.

Utilization of a patient-centered asthma passport tool in a subspecialty clinic.

Introduction: Despite available and effective tools for asthma self-assessment (Asthma Control Test, ACT) and self-management (Asthma Action Plan, AAP), they are underutilized in outpatient specialty clinics. We evaluated the impact of a patient-centered checklist, the Asthma Passport, on improving ACT and AAP utilization in clinic.

Methods: This was a randomized, interventional quality-improvement project in which the Asthma Passport was distributed to 120 pediatric asthma patients over the duration of 16 weeks.