Website for Self-Management of Fecal Incontinence

大便失禁自我管理网站

• 批准号: 8637226
• 负责人: WILLIAM E WHITEHEAD
• 金额: $ 22.8万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-09-19 至 2015-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8637226
• 关键词: Accidents; Address; Admission activity; Adult; Affect; Aftercare; Age; Biofeedback; Blood; Clinic; Cognitive; Cognitive deficits; Computers; Consult; Data; Development; Diagnosis; Discipline of Nursing; Education; Elderly; Exercise; Familiarity; Family Caregiver; Fecal Incontinence; Feces; Feedback; Fiber; Foundations; Frequencies; Functional Gastrointestinal Disorders; Future; Goals; Graph; Health; Health Personnel; Incontinence; Individual; Instruction; International; Internet; Intervention; Knowledge acquisition; Laboratory Study; Learning; Liquid substance; Mails; Medical; Methods; Modification; North Carolina; Nurses; Nursing Homes; Occupations; Outcome; Participant; Patient Education; Patients; Pelvic floor structure; Performance; Persons; Pharmaceutical Preparations; Physicians; Population; Primary Care Physician; Process; Protocols documentation; Provider; Quality of life; Randomized Controlled Trials; Recommendation; Recruitment Activity; Refractory; Reporting; Resources; Risk Factors; Sacral nerve; Schedule; Self Management; Severities; Social Interaction; Social isolation; Solid; Supplementation; Symptoms; System; Telephone; Testing; Text; Training; Training Programs; Treatment Protocols; Virginia; Work; aged; base; cost; design; diaries; disability; effective therapy; emotional distress; experience; laxative; medical attention; programs; public health relevance; self help; tool; treatment effect; treatment program; web site

DESCRIPTION (provided by applicant): Fecal incontinence (FI), affects 9% of non-institutionalized U.S. adults (15% of those over age 70). Frequent or large volume FI often leads to emotional distress, social isolation and job loss, and increases the likelihood of admission to a nursing home. Effective treatments are available in the form of biofeedback and sacral nerve stimulation, but these are expensive and not widely available. Moreover, more than 70% of patients with FI do not report it to a physician but attempt to manage on their own. Our team has developed a conservative treatment protocol involving patient education, pelvic floor exercises, and normalization of stool consistency with fiber or medication which reduces FI episode frequency by 60-80% and enables as many as 66% of patients to become continent. This degree of improvement may be enough to enable most patients to remain independent. Aims: Our long-term goal is to develop a self-management website based on this conservative treatment protocol which persons with FI can use as an adjunct to medical management. The following modifications are needed to change the current nurse-led treatment protocol into an effective self-management tool: (1) Redesign the patient education component into 15-20 minute modules followed by quizzes and retraining to insure mastery. (2) Develop an interactive patient diary which adjusts treatment targets based on the frequency of accidents and consistency of stools during the previous week, with graphical feedback of training progress and symptom change. (3) Develop a bank of frequently asked questions with answers. (4) Design the website so that family caregivers can assist patients with cognitive deficits or other disabilities to adhere to the treatment program. The aims of this R21 application are (a) to design the website to address the 4 subgoals listed above, and (b) to collect preliminary outcome data which will be used to design a randomized controlled trial (future R01). Methods: To address the first aim, small groups of 6-10 FI patients recruited from informational websites including www.aboutincontinence.org, www.med.unc.edu\IBS and from physician referrals will be asked to complete each educational module and to rate on a 0-10 scale the understandability of instructions, performance difficulty, and relevance of the website content. The process will be iterative such that, when a small group completes an educational module, the website will be modified based on their ratings, and new groups will be asked to test the modified website content until the average rating of understandability and relevance are >7/10 and their rating of difficulty is <3/10 for each educational module and for the interactive diary. Aim 2 will be addressed by recruiting a new group of 60 FI patients in North Carolina and Virginia who will complete the self-management protocol. We will evaluate FI frequency, FI severity and FI quality of life before and after treatment, and will ask these patients to provide feedback on the understandability, difficulty, and relevance of the program.

描述（由申请人提供）：大便失禁 (FI) 影响 9% 的非收容美国成年人（15% 的 70 岁以上成年人）。频繁或大量的 FI 通常会导致情绪困扰、社交孤立和失业，并增加入住疗养院的可能性。有效的治疗方法有生物反馈和骶神经刺激的形式，但这些方法价格昂贵且无法广泛使用。此外，超过 70% 的 FI 患者不会向医生报告，而是尝试自行处理。我们的团队制定了保守治疗方案，包括患者教育、盆底锻炼以及用纤维或药物使大便稠度正常化，从而将 FI 发作频率降低 60-80%，并使多达 66% 的患者能够控制饮食。这种程度的改善可能足以使大多数患者保持独立。目标：我们的长期目标是开发一个基于保守治疗方案的自我管理网站，FI 患者可以将其用作医疗管理的辅助手段。需要进行以下修改，将当前护士主导的治疗方案转变为有效的自我管理工具：（1）将患者教育部分重新设计为 15-20 分钟的模块，然后进行测验和再培训以确保掌握。 (2) 开发交互式患者日记，根据前一周的事故发生频率和大便稠度调整治疗目标，并以图形方式反馈训练进度和症状变化。 (3) 建立一个常见问题库并附上答案。 (4) 设计网站，以便家庭护理人员能够帮助有认知缺陷或其他残疾的患者坚持治疗计划。此 R21 应用程序的目的是 (a) 设计网站以解决上面列出的 4 个子目标，以及 (b) 收集初步结果数据，这些数据将用于设计随机对照试验（未来的 R01）。方法：为了实现第一个目标，从信息网站（包括 www.aboutincontinence.org、www.med.unc.edu\IBS）和医生推荐中招募的 6-10 名 FI 患者小组将被要求完成每个教育模块并按照 0-10 分的标准对说明的可理解性、操作难度以及网站内容的相关性进行评分。该过程将是迭代的，当一个小组完成一个教育模块时，网站将根据他们的评分进行修改，新的小组将被要求测试修改后的网站内容，直到可理解性和相关性的平均评分> 7 /10，每个教育模块和互动日记的难度等级<3/10。目标 2 将通过在北卡罗来纳州和弗吉尼亚州招募一组由 60 名 FI 患者组成的新小组来实现，他们将完成自我管理方案。我们将评估治疗前后的 FI 频率、FI 严重程度和 FI 生活质量，并要求这些患者提供有关该计划的可理解性、难度和相关性的反馈。