Division of Adolescent and Young Adult Medicine, Department of Pediatrics, UPMC Children's Hospital of Pittsburgh, University Center, 120 Lytton Ave, Mezzanine Floor Suite M060, Pittsburgh, PA, 15213, USA.
Center for Women's Health Research and Innovation (CWHRI), University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.
Patient. 2019 Apr;12(2):267-276. doi: 10.1007/s40271-018-0342-4.
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).
Key stakeholders participated in a systematic series of steps to iteratively develop and adapt patient educational resources. Process measures (stakeholder recruitment, composition, co-learning, and transparency) and proximal outcomes of stakeholder involvement (impact on the development process and satisfaction) were measured via recorded stakeholder recommendations and a stakeholder survey.
Seventeen stakeholders participated in seven group and two patient-only conference calls. The majority of stakeholders understood their roles, had their expectations met or exceeded, and were satisfied with the frequency and quality of engagement in the project. All stakeholders in attendance provided multiple concrete recommen-dations during the development process. Stakeholders explored the motivations of AYA women with CF related to SRH and agreed that the ideal resource should be online. After reviewing the design of existing resources, stakeholders decided by consensus to partner with a pre-existing young women's health website and created 11 CF-specific SRH guides.
This study illuminates a path for a formal process of stakeholder engagement and evaluation in educational resource development centered on the SRH care needs of AYA women with CF. Similar systematic, planned processes could be extended to other populations and aspects of healthcare.
利益相关者的参与，特别是整合患者和家属对重要事项的看法，越来越被认为是患者为中心的医疗保健服务的关键组成部分。本研究描述了一种针对利益相关者参与制定新型青少年和年轻成人（AYA）女性囊性纤维化（CF）患者性与生殖健康（SRH）教育资源的结构化方法，并对其进行了评估。
主要利益相关者参与了一系列系统性步骤，以迭代方式开发和调整患者教育资源。通过记录利益相关者的建议和利益相关者调查，评估了利益相关者参与的过程措施（利益相关者招募、组成、共同学习和透明度）和近期结果（对开发过程的影响和满意度）。
17 名利益相关者参加了 7 次小组和 2 次仅限患者的电话会议。大多数利益相关者了解他们的角色，其期望得到满足或超过，并且对项目参与的频率和质量感到满意。在开发过程中，所有出席的利益相关者都提出了多项具体建议。利益相关者探讨了 AYA CF 患者与 SRH 相关的动机，并一致认为理想的资源应该是在线的。在审查了现有资源的设计后，利益相关者一致决定与一个现有的年轻女性健康网站合作，并创建了 11 个 CF 特定的 SRH 指南。
本研究为以 AYA CF 患者的 SRH 护理需求为中心的教育资源开发中的利益相关者参与和评估提供了一种正式的方法。类似的系统、有计划的过程可以扩展到其他人群和医疗保健方面。
