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探索决策情境:了解间质性膀胱炎/膀胱疼痛综合征患者对粪便微生物群移植的动机和医疗支持需求:一项定性研究

Navigating the decision landscape: understanding interstitial cystitis/bladder pain syndrome patients' motivations and medical support needs for fecal microbiota transplantation: a qualitative research.

作者信息

Liu Hongyuan, Wei Yaodi, Jiang Peng, Fan Siyu, Zhao Yu, Li Zhi, Wang Shiyu, Zhang Na, Zhi Junjie, Wei Qun, Gu Yifeng, Yang Bihong, Feng Ninghan, Wu Yufan, Liu Fengping

机构信息

Wuxi School of Medicine, Jiangnan University, Wuxi, China.

Department of Urology, Nanjing Medical University, Affiliated Wuxi No. 2 Hospital, Wuxi, China.

出版信息

BMC Complement Med Ther. 2025 Jul 16;25(1):268. doi: 10.1186/s12906-025-04999-4.

DOI:10.1186/s12906-025-04999-4
PMID:40671002
Abstract

BACKGROUND

Interstitial cystitis/bladder pain syndrome (IC/BPS) patients often confront limited treatment options, leading them to contemplate fecal microbiota transplantation (FMT) as an alternative therapy. Recognizing the factors influencing their decision-making process and their medical support needs is imperative. This study aimed to investigate the determinants of decision-making and the medical support requirements of IC/BPS patients considering FMT as an alternative treatment.

METHODS

Semi-structured interviews were conducted with 18 IC patients to explore their motivations for choosing FMT and their decision-making prerequisites. Data analysis was conducted using a thematic approach.

RESULTS

Two overarching themes and seven subthemes were identified. (1) Reasons for choosing FMT. ① Awareness of the complexity and intractability of the disease: Patients exhibited a profound understanding of IC's intricacy and intractability, which ignited their interest in FMT; ② Current treatment dissatisfaction boosted interest in FMT: Discontent with conventional treatments significantly impelled patients to consider FMT; ③ FMT is perceived as a side-effect-free holistic regulatory therapy; ④ Severe negative emotions drive patients to choose FMT: Strong emotions, such as anxiety and desperation, were motivating factors for patients choosing FMT. (2) Professional assistance required when choosing FMT. ① Access to Information Sources: Patients expressed a strong need for comprehensive information resources to aid their decision-making; ② Patients want to learn about peers' treatment experiences and outcomes: Patients sought insights from individuals who had undergone FMT; ③ Patients want more opportunities for communication with healthcare providers: enhanced communication channels with healthcare professionals were desired.

CONCLUSIONS

These findings emphasize the significance of addressing the intricate informational and emotional needs of IC/BPS patients when considering FMT as a treatment option. Tailored information delivery and peer support can facilitate informed decision-making within the context of FMT for IC/BPS.

TRIAL REGISTRATION

The trial registration number, CHiCTR2100048970, was registered on July 19, 2021.

摘要

背景

间质性膀胱炎/膀胱疼痛综合征(IC/BPS)患者常常面临有限的治疗选择,这使得他们考虑将粪便微生物群移植(FMT)作为一种替代疗法。认识到影响他们决策过程的因素以及他们的医疗支持需求至关重要。本研究旨在调查将FMT作为替代治疗的IC/BPS患者的决策决定因素和医疗支持需求。

方法

对18名IC患者进行了半结构化访谈,以探讨他们选择FMT的动机及其决策前提条件。采用主题分析法进行数据分析。

结果

确定了两个总体主题和七个子主题。(1)选择FMT的原因。①对疾病复杂性和难治性的认识:患者对IC的复杂性和难治性有深刻理解,这激发了他们对FMT的兴趣;②对当前治疗的不满增加了对FMT的兴趣:对传统治疗的不满显著促使患者考虑FMT;③FMT被视为一种无副作用的整体调节疗法;④严重的负面情绪促使患者选择FMT:焦虑和绝望等强烈情绪是患者选择FMT的驱动因素。(2)选择FMT时所需的专业帮助。①获取信息来源:患者表示强烈需要全面的信息资源来辅助决策;②患者希望了解同行的治疗经验和结果:患者寻求接受过FMT的人的见解;③患者希望有更多与医疗服务提供者沟通的机会:希望与医疗专业人员加强沟通渠道。

结论

这些发现强调了在将FMT作为治疗选择时,满足IC/BPS患者复杂的信息和情感需求的重要性。量身定制的信息传递和同伴支持可以促进IC/BPS患者在FMT背景下做出明智的决策。

试验注册

试验注册号CHiCTR2100048970于2021年7月19日注册。

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