Hirschsprung-associated Enterocolitis Action Plan: A Pictographic Tool for Caregivers of Children With Hirschsprung Disease

IF 2.4 2区医学 Q1 PEDIATRICS

Journal of pediatric surgery Pub Date : 2025-03-12 DOI:10.1016/j.jpedsurg.2025.162269

Elizaveta Bokova , Ismael Elhalaby , Bobby Dow , Patrick T. Reeves , Rebecca M. Rentea

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引用次数: 0

Abstract

Background

Hirschsprung-associated enterocolitis (HAEC) is a life-threatening complication of Hirschsprung disease (HD), with significant morbidity and mortality rates. Early diagnosis and treatment are critical, and caregivers play a key role in detecting HAEC, performing colonic irrigations, and seeking timely medical care. This study validates an HAEC action plan designed to assist caregivers in managing HAEC at home.

Methods

A caregiver-focused HAEC Action Plan was developed following the National Institute of Health (NIH) 5-step “Clear & Simple” approach. It included patient-specific information, symptom pictographs, and a stepwise HAEC management protocol. Previously validated pictograms were used with the permission of the original institution. Additionally, 6 unvalidated pictograms were used. Readability was assessed using multiple formulas. Caregivers and the community evaluated the newly used pictograms' validity and action plan's comprehension, quality, and usefulness using the Consumer Information Rating Form (CIRF). Understandability and actionability were evaluated by librarians using the Patient Education Materials Assessment Tool. Clinicians validated its suitability using the modified Suitability Assessment of Materials (SAM) instrument.

Results

The 6 new pictograms were validated. Readability was acceptably below the 6th-grade level. Overall CIRF score reached 91.5 % (superior). Understandability, actionability, and suitability were rated at 91 %, 91 %, and 82.5 %, respectively. Suggested improvements included using clearer pictograms, unit adjustments, additional details on irrigation duration, improved text visibility, and translation of the tool into other languages.

Conclusions

The HAEC Action Plan is a clear, user-friendly tool for guiding caregivers in the early recognition and management of HAEC. Once employed in clinical practice, it has the potential to reduce HAEC-associated morbidity and mortality in children with HD.

Level of Evidence

N/A.

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巨结肠相关小肠结肠炎行动计划：巨结肠疾病儿童护理人员的象形文字工具

先天性巨结肠相关小肠结肠炎（HAEC）是先天性巨结肠疾病（HD）的一种危及生命的并发症，具有很高的发病率和死亡率。早期诊断和治疗至关重要，护理人员在发现HAEC、进行结肠冲洗和寻求及时医疗护理方面发挥着关键作用。本研究验证了旨在帮助护理人员在家管理HAEC的HAEC行动计划。方法根据美国国立卫生研究院（NIH）的5步“Clear &；简单的”方法。它包括患者特定信息、症状象形图和逐步的HAEC管理方案。先前经过验证的象形文字是在原机构的许可下使用的。另外，使用了6个未经验证的象形图。使用多种公式评估可读性。护理人员和社区使用消费者信息评价表（CIRF）评估新使用的象形文字的有效性和行动计划的理解、质量和有用性。可理解性和可操作性由图书馆员使用患者教育材料评估工具进行评估。临床医生使用改进的材料适用性评估（SAM）仪器验证其适用性。结果6个新象形图得到了验证。可接受的可读性低于六年级的水平。总CIRF评分达到91.5%（优等）。可理解性、可操作性和适用性的评分分别为91%、91%和82.5%。建议的改进包括使用更清晰的象形图，单位调整，灌溉持续时间的额外细节，改进的文本可见性，以及将工具翻译成其他语言。结论HAEC行动计划是指导护理人员早期识别和管理HAEC的一个清晰、易用的工具。一旦用于临床实践，它有可能降低与haec相关的儿童HD发病率和死亡率。证据水平

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of pediatric surgery 医学-外科

CiteScore

1.10

自引率

12.50%

发文量

569

审稿时长

38 days

期刊介绍： The journal presents original contributions as well as a complete international abstracts section and other special departments to provide the most current source of information and references in pediatric surgery. The journal is based on the need to improve the surgical care of infants and children, not only through advances in physiology, pathology and surgical techniques, but also by attention to the unique emotional and physical needs of the young patient.