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对炎症性肠病患者残疾状况及心理社会护理的见解。

Insights into disability and psycho-social care of patients with inflammatory bowel disease.

作者信息

Nardone Olga Maria, Calabrese Giulio, La Mantia Alessia, Caso Rossella, Testa Anna, Castiglione Fabiana

机构信息

Department of Public Health, University of Naples Federico II, Naples, Italy.

Department of Clinical Medicine and Surgery, University of Naples Federico II, Naples, Italy.

出版信息

Front Med (Lausanne). 2024 May 28;11:1416054. doi: 10.3389/fmed.2024.1416054. eCollection 2024.

DOI:10.3389/fmed.2024.1416054
PMID:38863889
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11165103/
Abstract

In recent years, the concept of disability has increasingly garnered attention as a crucial long-term target of inflammatory bowel disease (IBD) management. The treatment paradigm has changed dramatically from full control of the disease (clinical and endoscopic remission) toward physical and emotional well-being with the goal of preventing disability and normalizing quality of life. However, in certain cases, despite achieving good disease control, patients may still experience symptoms associated with disability, and reduced emotional wellness. These symptoms can significantly impact various biopsychosocial factors, including interpersonal relationships, educational or work-related activities, body image, and sexual functioning. Nevertheless, they often remain overlooked in the context of IBD care. In this narrative review, we aim to shed light on the burden of certain disability-related symptoms such as bowel urgency, sexual dysfunction, impaired fertility and fatigue, emphasizing the importance of acknowledging and validating them in a clinical setting. There is a demanding need for comprehensive care for IBD patients, with IBD clinicians being mindful of the psychosocial challenges faced by their patients. Providing timely and appropriate management of these challenges alongside IBD treatment is key to achieving holistic remission and enhancing the overall quality of life while reducing disability.

摘要

近年来,残疾概念作为炎症性肠病(IBD)管理的一个关键长期目标,越来越受到关注。治疗模式已从完全控制疾病(临床和内镜缓解)大幅转变为追求身体和情感健康,目标是预防残疾并使生活质量正常化。然而,在某些情况下,尽管疾病得到了良好控制,患者仍可能出现与残疾相关的症状以及情绪健康状况下降。这些症状会显著影响各种生物心理社会因素,包括人际关系、教育或工作相关活动、身体形象和性功能。尽管如此,在IBD护理中,这些症状往往仍被忽视。在这篇叙述性综述中,我们旨在阐明某些与残疾相关的症状(如肠道急迫感、性功能障碍、生育能力受损和疲劳)的负担,强调在临床环境中认识并确认这些症状的重要性。IBD患者迫切需要全面护理,IBD临床医生应意识到患者面临的心理社会挑战。在进行IBD治疗的同时,及时、适当地应对这些挑战是实现整体缓解、提高总体生活质量并减少残疾的关键。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5d58/11165103/ebe897ce15d6/fmed-11-1416054-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5d58/11165103/9375d351e454/fmed-11-1416054-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5d58/11165103/ebe897ce15d6/fmed-11-1416054-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5d58/11165103/9375d351e454/fmed-11-1416054-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5d58/11165103/ebe897ce15d6/fmed-11-1416054-g002.jpg

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Updates on the management of inflammatory bowel disease from periconception to pregnancy and lactation.从受孕前到妊娠和哺乳期炎症性肠病的管理更新。
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Disease Acceptance, but not Perceived Control, is Uniquely Associated with Inflammatory Bowel Disease-related Disability.
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J Crohns Colitis. 2024 Aug 6;18(7):1025-1033. doi: 10.1093/ecco-jcc/jjae025.
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Psychological burden and quality of life in newly diagnosed inflammatory bowel disease patients.新诊断炎症性肠病患者的心理负担与生活质量
Front Psychol. 2024 Jan 29;15:1334308. doi: 10.3389/fpsyg.2024.1334308. eCollection 2024.
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Modafinil for Severe Fatigue in Inflammatory Bowel Disease: A Prospective Case Series.莫达非尼治疗炎症性肠病严重疲劳:一项前瞻性病例系列研究。
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