Kvåle Charlotte, Tokovska Miroslava, Tennfjord Merete Kolberg
Department of Health and Exercise, Kristiania University of Applied Sciences, Oslo, Norway.
Norwegian Directorate of Health, Oslo, Norway.
Womens Health (Lond). 2025 Jan-Dec;21:17455057251347085. doi: 10.1177/17455057251347085. Epub 2025 Jul 21.
Endometriosis is a chronic inflammatory disease, characterised by pain and potential fertility reduction, affecting 6%-10% of women. Pain management courses may promote self-care and enhance patient satisfaction. However, research into the experiences of participation in such courses are lacking.
The study aims to describe the experiences of Norwegian women with endometriosis after pain management course and their view on optimal healthcare through organisational and individual health literacy.
Qualitative study as part of a randomised controlled trial (NCT05091268).
Semi-structured individual in-depth interviews were conducted between August and November 2023 with 19 women diagnosed with endometriosis, recruited from two University hospitals specialising in endometriosis care, through a patient organisation and social media, after participation in a multidisciplinary pain management course.
Reflexive thematic analysis yielded two main themes: (1) Insightful experiences with individual health literacy and (2) frustrating experiences with organisational health literacy. Participants reported a positive shift in their ability to self-manage endometriosis following the pain management course, demonstrating a progression from passive to active participation in their own care. The participants also expressed a strong and recurring need for enhanced dissemination of information, including a need for post-diagnosis educational courses, highlighting a demand for ongoing, interactive support tailored to their condition.
A need emerges for improved dissemination of information, enhanced monitoring, and health expertise at an organisational level within the healthcare system. Thus, future health care services should aim to provide seamless, multidisciplinary treatment to improve patient satisfaction.
Trial registry name: Effect of Physical Activity and Pain Education on Endometriosis-Associated Pain.
NCT05091268. URL: https://clinicaltrials.gov/study/NCT05091268.
子宫内膜异位症是一种慢性炎症性疾病，其特征为疼痛和潜在的生育能力下降，影响6%-10%的女性。疼痛管理课程可能会促进自我护理并提高患者满意度。然而，关于参与此类课程的体验的研究却很缺乏。
本研究旨在描述挪威子宫内膜异位症女性在参加疼痛管理课程后的体验，以及她们通过组织和个人健康素养对最佳医疗保健的看法。
作为一项随机对照试验（NCT05091268）一部分的定性研究。
2023年8月至11月，对19名被诊断为子宫内膜异位症的女性进行了半结构化的个人深入访谈。这些女性是从两家专门从事子宫内膜异位症护理的大学医院招募而来，通过一个患者组织和社交媒体，她们参加了一个多学科疼痛管理课程。
反思性主题分析产生了两个主要主题：（1）个人健康素养方面的深刻体验和（2）组织健康素养方面的令人沮丧的体验。参与者报告称，在参加疼痛管理课程后，她们自我管理子宫内膜异位症的能力有了积极转变，表明从被动参与自身护理转变为主动参与。参与者还强烈且反复地表达了对加强信息传播的需求，包括对诊断后教育课程的需求，突出了对针对其病情的持续、互动支持的需求。
医疗保健系统在组织层面需要改进信息传播、加强监测并提高健康专业水平。因此，未来的医疗保健服务应旨在提供无缝的多学科治疗，以提高患者满意度。
试验注册名称：体育活动和疼痛教育对子宫内膜异位症相关疼痛的影响。注册编号：NCT05091268。网址：https://clinicaltrials.gov/study/NCT05091268
