From the Division of Female Pelvic Medicine and Reconstructive Surgery, Department of Obstetrics and Gynecology.
Community Engagement and Research Core, Clinical and Translational Science Center, University of New Mexico, Albuquerque, NM.
Urogynecology (Phila). 2022 Oct 1;28(10):695-704. doi: 10.1097/SPV.0000000000001228. Epub 2022 Jun 17.
Women with interstitial cystitis/bladder pain syndrome (ICBPS) face challenging treatment and feelings of isolation. Centering models of group medical visits have been successful in other spheres but have not been explored in ICBPS therapy.
We sought to describe opinions of women with ICBPS regarding Centering visits, including advantages, experience, and barriers to participation and efficacy.
Patients who attended Centering visits participated in a focus group and/or filled out written commentary in evaluations, and control patients were individually interviewed. We coded transcripts using NVivo software for emergent themes.
We conducted 4 control patient individual interviews, had one focus group of Centering patients, and collected comments from 34 post-Centering surveys. Emergent themes of interest included motivations and barriers to joining, cost, leadership, connecting with others, diversity, learning, alternative treatments, and areas for improvement. Regardless of participation in Centering, patients noted the importance of self-care and sharing with other women with ICBPS, and they emphasized feelings of isolation in their disease and discouraging health care experiences. Women in Centering noted that the biggest advantages of Centering were learning from other women with ICBPS, the creation of a welcoming and safe space, and the feeling that Centering was more of a support group than a medical visit. Women noted that barriers to Centering included cost and logistical issues, such as time and format.
Women with ICBPS treatment note that Centering group visits provide a sense of learning and community that opens them to a wider variety of options.
患有间质性膀胱炎/膀胱疼痛综合征(ICBPS)的女性面临着具有挑战性的治疗和孤立感。以患者为中心的团体就诊模式在其他领域取得了成功,但尚未在 ICBPS 治疗中进行探索。
我们旨在描述患有 ICBPS 的女性对以患者为中心的就诊的看法,包括参与的优势、体验、障碍和疗效。
参加以患者为中心就诊的患者参加了焦点小组和/或在评估中填写了书面评论,而对照组患者则接受了单独的访谈。我们使用 NVivo 软件对转录本进行编码,以提取主题。
我们进行了 4 次对照组患者的单独访谈,进行了一次以患者为中心的焦点小组,以及收集了 34 份就诊后的调查反馈。出现的主题包括参与动机和障碍、费用、领导力、与他人的联系、多样性、学习、替代疗法以及需要改进的领域。无论是否参与以患者为中心的就诊,患者都指出了加入的动机和障碍,包括费用和后勤问题,如时间和形式。患者还强调了在疾病中感到孤立和令人沮丧的医疗体验。参加以患者为中心就诊的女性指出,以患者为中心就诊的最大优势是向其他患有 ICBPS 的女性学习、创造一个欢迎和安全的空间,以及感觉以患者为中心的就诊更像是一个支持小组而不是医疗就诊。女性还指出,以患者为中心就诊的障碍包括费用和后勤问题,如时间和形式。
接受 ICBPS 治疗的女性指出,以患者为中心的团体就诊为她们提供了学习和社区感,使她们能够接受更多的选择。