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系统评价:慢性肝病确诊患者未满足的支持性护理需求

Systematic review: unmet supportive care needs in people diagnosed with chronic liver disease.

作者信息

Valery Patricia C, Powell Elizabeth, Moses Neta, Volk Michael L, McPhail Steven M, Clark Paul J, Martin Jennifer

机构信息

Menzies School of Health Research, Charles Darwin University, Darwin, Northern Territory, Australia School of Medicine, University of Queensland, Brisbane, Queensland, Australia.

Centre for Liver Disease Research, School of Medicine, The University of Queensland, Brisbane, Queensland, Australia Department of Gastroenterology and Hepatology, Princess Alexandra Hospital, Brisbane, Queensland, Australia.

出版信息

BMJ Open. 2015 Apr 8;5(4):e007451. doi: 10.1136/bmjopen-2014-007451.

Abstract

OBJECTIVE

People with chronic liver disease, particularly those with decompensated cirrhosis, experience several potentially debilitating complications that can have a significant impact on activities of daily living and quality of life. These impairments combined with the associated complex treatment mean that they are faced with specific and high levels of supportive care needs. We aimed to review reported perspectives, experiences and concerns of people with chronic liver disease worldwide. This information is necessary to guide development of policies around supportive needs screening tools and to enable prioritisation of support services for these patients.

DESIGN

Systematic searches of PubMed, MEDLINE, CINAHL and PsycINFO from the earliest records until 19 September 2014. Data were extracted using standardised forms. A qualitative, descriptive approach was utilised to analyse and synthesise data.

RESULTS

The initial search yielded 2598 reports: 26 studies reporting supportive care needs among patients with chronic liver disease were included, but few of them were patient-reported needs, none used a validated liver disease-specific supportive care need assessment instrument, and only three included patients with cirrhosis. Five key domains of supportive care needs were identified: informational or educational (eg, educational material, educational sessions), practical (eg, daily living), physical (eg, controlling pruritus and fatigue), patient care and support (eg, support groups), and psychological (eg, anxiety, sadness).

CONCLUSIONS

While several key domains of supportive care needs were identified, most studies included hepatitis patients. There is a paucity of literature describing the supportive care needs of the chronic liver disease population likely to have the most needs--namely those with cirrhosis. Assessing the supportive care needs of people with chronic liver disease have potential utility in clinical practice for facilitating timely referrals to support services.

摘要

目的

慢性肝病患者,尤其是失代偿期肝硬化患者,会经历多种可能导致身体衰弱的并发症,这些并发症会对日常生活活动和生活质量产生重大影响。这些损伤加上相关的复杂治疗意味着他们面临着特定且高水平的支持性护理需求。我们旨在综述全球慢性肝病患者报告的观点、经历和担忧。这些信息对于指导围绕支持性需求筛查工具的政策制定以及确定这些患者支持性服务的优先次序是必要的。

设计

对PubMed、MEDLINE、CINAHL和PsycINFO从最早记录到2014年9月19日进行系统检索。使用标准化表格提取数据。采用定性、描述性方法分析和综合数据。

结果

初步检索产生了2598份报告:纳入了26项关于慢性肝病患者支持性护理需求的研究,但其中很少是患者报告的需求,没有一项使用经过验证的肝病特异性支持性护理需求评估工具,只有三项纳入了肝硬化患者。确定了支持性护理需求的五个关键领域:信息或教育(如教育材料、教育课程)、实际(如日常生活)、身体(如控制瘙痒和疲劳)、患者护理和支持(如支持小组)以及心理(如焦虑、悲伤)。

结论

虽然确定了支持性护理需求的几个关键领域,但大多数研究纳入的是肝炎患者。描述可能最需要支持性护理的慢性肝病患者群体——即肝硬化患者——的支持性护理需求的文献很少。评估慢性肝病患者的支持性护理需求在临床实践中可能有助于及时转诊至支持性服务。

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