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.
Division of Respiratory Diseases, Department of Medicine (TM Kazmerski, OV Prushinskaya, E Nelson, J Leonard, K Mogren, J Roboff, A Uluer, and GS Sawicki).
Acad Pediatr. 2019 Apr;19(3):307-314. doi: 10.1016/j.acap.2018.08.011. Epub 2018 Aug 31.
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.
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.
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.
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.
患有儿科起病的慢性疾病（如囊性纤维化（CF））的青少年和年轻成人（AYA）女性面临与疾病相关的特定的性与生殖健康（SRH）问题。本研究采用概念映射（CM）方法，旨在确定 CF 青少年女性及其父母看重的 SRH 主题和结果。
年龄在 13 至 30 岁之间的 CF 女性患者和 13 至 30 岁 CF 女儿的父母参与了这项在线 CM 研究。参与者分别围绕 CF 中与 AYA 女性相关的 SRH 主题进行头脑风暴、评分和分类。使用多维标度、层次聚类分析和 t 检验来评估评分差异，多学科利益相关者在面对面会议中对结果进行解释。
24 名参与者（13 名 AYA 和 11 名父母）围绕 CF 中的 SRH 生成了 109 个陈述；88%的参与者完成了评分和分类。16 名利益相关者命名了 6 个主要的概念群：生育和怀孕、决定要孩子、避孕、应对生活、性行为和妇科问题。参与者将避孕的重要性评为对青少年女性最高（5 分制，平均 3.9 ± 0.1），而生育和怀孕则是对年轻成人女性最高（平均 4.2 ± 0.04）。父母对所有类别都给予了比患者参与者更高的重要性评分。利益相关者确定了每个类别中以患者为中心的结果，并侧重于如何在专科环境中改善 SRH 知识、决策制定和医患沟通。
使用 CM 引出以患者为中心的结果，可以为儿科起病的慢性疾病患者的护理提供改进。本研究中确定的 SRH 主题和以患者为中心的结果应有助于为这些人群提供综合临床护理。
