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生长激素缺乏或特发性矮小儿童及青少年的健康相关生活质量评估与患者满意度——第1部分:对现有工具的批判性评价

Assessment of health-related quality of life and patient satisfaction in children and adolescents with growth hormone deficiency or idiopathic short stature - part 1: a critical evaluation of available tools.

作者信息

Brütt Anna Levke, Sandberg David E, Chaplin John, Wollmann Hartmut, Noeker Meinolf, Kołtowska-Häggström Maria, Bullinger Monika

机构信息

Institute for Medical Psychology, University Hospital Hamburg Eppendorf, Hamburg, Germany.

出版信息

Horm Res. 2009;72(2):65-73. doi: 10.1159/000232158. Epub 2009 Aug 18.

Abstract

The concept of health-related quality of life (HrQoL) reflects the subjective perception of health and includes aspects of well-being and functioning in physical, emotional, mental and social life domains. Nowadays, HrQoL has become a relevant treatment outcome from epidemiological and clinical perspectives and is also broadly employed in health economic analyses. To assess HrQoL generic as well as condition-specific instruments are used. The former are applicable to a wide range of health conditions and aim at measuring HrQoL across different conditions. The latter focus on capturing the impact of a specific disease. Although HrQoL research in adults is now well-advanced, there are still open questions regarding how to assess HrQoL in pediatric conditions, such as short stature. Eight generic (one chronic-generic) and seven condition-specific (one treatment-specific) instruments used in HrQoL research in short stature of youth are described. Additionally, this mini review identifies a need for further research and indicates potential directions.

摘要

健康相关生活质量(HrQoL)的概念反映了对健康的主观认知,包括身体、情感、心理和社会生活领域的幸福和功能方面。如今,从流行病学和临床角度来看,HrQoL已成为一个相关的治疗结果,并且在健康经济分析中也被广泛应用。为了评估HrQoL,使用了通用型以及特定疾病型工具。前者适用于广泛的健康状况,旨在测量不同状况下的HrQoL。后者则专注于捕捉特定疾病的影响。尽管目前成人的HrQoL研究已经很先进,但在如何评估儿科疾病(如身材矮小)的HrQoL方面仍存在未解决的问题。本文描述了用于青少年身材矮小的HrQoL研究中的8种通用型(1种慢性通用型)和7种特定疾病型(1种治疗特定型)工具。此外,本综述指出了进一步研究的必要性并指明了潜在方向。

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