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克罗恩病管理中的肠内营养支持:成人患者体验、挑战和促成因素的定性探索。

Exclusive enteral nutrition in the management of Crohn's disease: a qualitative exploration of experiences, challenges and enablers in adult patients.

机构信息

Gold Coast Hospital and Health Service, Nutrition and Food Service Department, 1 Hospital Boulevard Southport, Southport, QLD, Australia.

Centre for Applied Health Economics, School of Medicine, Griffith University, Sir Samuel Griffith Centre, Nathan, QLD, Australia.

出版信息

J Hum Nutr Diet. 2021 Apr;34(2):440-449. doi: 10.1111/jhn.12829. Epub 2020 Oct 22.

Abstract

BACKGROUND

Exclusive enteral nutrition (EEN) is a first-line treatment for Crohn's disease in paediatrics with similar efficiency to corticosteroids. Benefits in adults have not been consistently observed with non-adherence cited as a limiting factor. This study aimed to gain an in depth understanding of the adult patient experience with EEN, identifying challenges and enablers to inform clinicians in the development of strategies to help increase patient adherence.

METHODS

This exploratory, qualitative study utilised individual semi-structured interviews with 17 adult patients who had completed EEN. Participants were purposively recruited across a range of ages, social backgrounds and clinical experience. Interviews were audio recorded, transcribed and independently thematically analysed by two researchers to provide consensus in identifying key themes.

RESULTS

Three major themes were identified. (i) Personal experience of EEN evolved over time, with the first few weeks the most challenging, becoming easier as symptoms improved, and participants became used to the EEN regimen. (ii) Participants developed coping strategies to manage challenges, including the impact on meal-based social participation and dietary restriction and monotony. (iii) Enabling factors for adherence to EEN included patient self-efficacy, health system support, supplement characteristics and access, and social support.

CONCLUSIONS

This study explored the evolving experiences of patients who completed a prescribed course of EEN. Patients described the challenges they faced, how they overcame them identifying enablers for adherence. This provides useful strategies for clinicians to integrate in their assessments and share with patients starting EEN.

摘要

背景

在儿科,肠内营养(EEN)是克罗恩病的一线治疗方法,其疗效与皮质类固醇相当。但在成人中,并非始终观察到获益,不依从被认为是一个限制因素。本研究旨在深入了解接受 EEN 治疗的成年患者的体验,确定挑战和促进因素,为临床医生制定策略提供信息,以帮助提高患者的依从性。

方法

本探索性、定性研究采用个体半结构式访谈,共访谈了 17 名已完成 EEN 的成年患者。参与者根据年龄、社会背景和临床经验进行有目的的招募。访谈进行了录音、转录,并由两名研究人员独立进行主题分析,以确保在识别关键主题方面达成共识。

结果

确定了三个主要主题。(i)EEN 的个人体验随着时间的推移而演变,最初几周最具挑战性,随着症状的改善和患者逐渐适应 EEN 方案,变得更容易。(ii)参与者制定了应对策略来应对挑战,包括对基于餐食的社交参与和饮食限制以及单调的影响。(iii)EEN 依从性的促进因素包括患者的自我效能、卫生系统支持、补充剂的特点和可及性,以及社会支持。

结论

本研究探讨了完成规定 EEN 疗程的患者不断变化的体验。患者描述了他们面临的挑战,以及他们如何克服这些挑战,确定了依从性的促进因素。这为临床医生在评估和与开始接受 EEN 治疗的患者分享时提供了有用的策略。

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