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一种针对炎症性肠病疲劳、疼痛和尿急症状的新型数字自我管理干预措施:描述其开发过程。

A Novel Digital Self-management Intervention for Symptoms of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Describing the Process of Development.

作者信息

Sweeney Louise, Windgassen Sula, Artom Micol, Norton Christine, Fawson Sophie, Moss-Morris Rona

机构信息

Health Psychology Section, King's College London, London, United Kingdom.

NHS Digital, London, United Kingdom.

出版信息

JMIR Form Res. 2022 May 18;6(5):e33001. doi: 10.2196/33001.


DOI:10.2196/33001
PMID:35583924
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9161057/
Abstract

BACKGROUND: Empirical studies and systematic reviews have demonstrated the role of biological, cognitive, behavioral, and emotional factors in fatigue, pain, and urgency in inflammatory bowel disease (IBD). Behavioral management that addresses the cognitive, behavioral, and emotional factors offered alongside medical treatment is seldom available to people with IBD. Digital interventions provide a potentially scalable and cost-effective way of providing behavioral support to patients. OBJECTIVE: This paper aimed to describe the process of developing a supported digital self-management intervention for fatigue, pain, and urgency in IBD using theory and evidence-based approaches and stakeholder input. METHODS: The Medical Research Council framework for complex health interventions and a person-based approach were used to guide intervention development, consulting with 87 patients with IBD and 60 nurses. These frameworks informed the selection and use of a theoretical model that subsequently guided cognitive behaviorally based intervention content. They also guided the design of tailored digital intervention pathways for individuals with IBD that matched the predominant symptoms. RESULTS: A transsymptomatic cognitive behavioral framework of symptom perpetuation was developed for the symptoms of fatigue, pain, and urgency in IBD. A logic model was used to define the intervention techniques. Patient feedback and qualitative interviews refined the website content and functionalities, including the use of visual aids, email reminders, and graphical tracking of symptoms. Nurse focus groups informed the volume and delivery model of the therapist facilitator support. Ratings of acceptability out of 10 following feasibility testing (31/87, 36%) demonstrated accessibility (scoring 9.43, SD 1.040), ease (scoring 8.07, SD 3.205), clarity, and the relevant tone of the intervention. The final intervention comprised 12 web-based sessions (8 core and 4 symptom-specific), with one 30-minute facilitator phone call following session 1 and subsequent on-site messaging. CONCLUSIONS: The use of theory and integration of stakeholders' views throughout informed the development of an evidence-based digital intervention for fatigue, pain, and urgency in IBD. This is the first web-based self-management intervention designed to address these multiple symptoms with the aim of improving the quality of life and reducing the symptom burden of IBD. The intervention is being tested in a large multicenter randomized controlled trial. TRIAL REGISTRATION: ISRCTN Registry ISRCTN71618461; https://www.isrctn.com/ISRCTN71618461.

摘要

背景:实证研究和系统评价已证明生物学、认知、行为和情感因素在炎症性肠病(IBD)的疲劳、疼痛和尿急症状中所起的作用。针对IBD患者,在药物治疗的同时提供针对认知、行为和情感因素的行为管理服务十分少见。数字干预为向患者提供行为支持提供了一种潜在的可扩展且具成本效益的方式。 目的:本文旨在描述采用基于理论和证据的方法以及利益相关者的意见,开发一种针对IBD疲劳、疼痛和尿急症状的支持性数字自我管理干预措施的过程。 方法:采用医学研究理事会复杂健康干预框架和以人为本的方法来指导干预措施的开发,并咨询了87名IBD患者和60名护士。这些框架为理论模型的选择和使用提供了依据,该理论模型随后指导了基于认知行为的干预内容。它们还指导了针对IBD患者且与主要症状相匹配的定制数字干预路径的设计。 结果:针对IBD的疲劳、疼痛和尿急症状,开发了一个症状持续的跨症状认知行为框架。使用逻辑模型来定义干预技术。患者反馈和定性访谈完善了网站内容和功能,包括使用视觉辅助工具、电子邮件提醒以及症状的图形跟踪。护士焦点小组为治疗师促进者支持的数量和提供模式提供了信息。可行性测试后(31/87,36%)的可接受性评分(满分10分)显示出该干预措施具有可及性(得分9.43,标准差1.040)、易用性(得分8.07,标准差3.205)、清晰度以及恰当的语气。最终的干预措施包括12个基于网络的课程(8个核心课程和4个症状特定课程),在第1次课程后有一次30分钟的促进者电话沟通以及后续的现场信息推送。 结论:在整个过程中运用理论并整合利益相关者的观点,为开发一种基于证据的针对IBD疲劳、疼痛和尿急症状的数字干预措施提供了依据。这是首个旨在解决这些多种症状,以改善生活质量并减轻IBD症状负担的基于网络的自我管理干预措施。该干预措施正在一项大型多中心随机对照试验中进行测试。 试验注册:国际标准随机对照试验编号ISRCTN71618461;https://www.isrctn.com/ISRCTN71618461 。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2eb0/9161057/b7f6d20364ab/formative_v6i5e33001_fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2eb0/9161057/0b2d7b18d324/formative_v6i5e33001_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2eb0/9161057/4f6017e89e89/formative_v6i5e33001_fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2eb0/9161057/b7f6d20364ab/formative_v6i5e33001_fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2eb0/9161057/0b2d7b18d324/formative_v6i5e33001_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2eb0/9161057/4f6017e89e89/formative_v6i5e33001_fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2eb0/9161057/b7f6d20364ab/formative_v6i5e33001_fig3.jpg

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[1]
Psychological interventions for treatment of inflammatory bowel disease.

Cochrane Database Syst Rev. 2025-4-17

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[4]
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本文引用的文献

[1]
Supported online self-management versus care as usual for symptoms of fatigue, pain and urgency/incontinence in adults with inflammatory bowel disease (IBD-BOOST): study protocol for a randomised controlled trial.

Trials. 2021-8-3

[2]
Developing an Online Program for Self-Management of Fatigue, Pain, and Urgency in Inflammatory Bowel Disease: Patients' Needs and Wants.

Dig Dis Sci. 2022-7

[3]
Pain management in inflammatory bowel disease: feasibility of an online therapist-supported CBT-based self-management intervention.

Pilot Feasibility Stud. 2021-4-16

[4]
Patient Strategies for Managing the Vicious Cycle of Fatigue, Pain and Urgency in Inflammatory Bowel Disease: Impact, Planning and Support.

Dig Dis Sci. 2021-10

[5]
Understanding Self-Guided Web-Based Educational Interventions for Patients With Chronic Health Conditions: Systematic Review of Intervention Features and Adherence.

J Med Internet Res. 2020-8-13

[6]
Implementing Web-Based Therapy in Routine Mental Health Care: Systematic Review of Health Professionals' Perspectives.

J Med Internet Res. 2020-7-23

[7]
Interventions for fatigue in inflammatory bowel disease.

Cochrane Database Syst Rev. 2020-4-16

[8]
Cognitive Behavioral Therapy for the Management of Multiple Sclerosis-Related Pain: A Randomized Clinical Trial.

Int J MS Care. 2020

[9]
Cognitive-behavioural therapy for the management of inflammatory bowel disease-fatigue: a feasibility randomised controlled trial.

Pilot Feasibility Stud. 2019-12-10

[10]
Developing a better biopsychosocial understanding of pain in inflammatory bowel disease: a cross-sectional study.

Eur J Gastroenterol Hepatol. 2020-3

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