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验证意大利矮小青少年生活质量(QoLISSY)问卷。

Validation of the Italian Quality of Life in Short Stature Youth (QoLISSY) questionnaire.

机构信息

Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Germany.

Istituto Giannina Gaslini, Genova, Italy.

出版信息

J Endocrinol Invest. 2017 Oct;40(10):1077-1084. doi: 10.1007/s40618-017-0667-1. Epub 2017 Apr 10.

DOI:10.1007/s40618-017-0667-1
PMID:28397185
Abstract

PURPOSE

The Quality of Life in Short Stature Youth (QoLISSY) questionnaire is a disease-specific instrument developed to assess health-related quality of life (HrQoL) in children with short stature. While the original instrument was simultaneously developed in five European countries, this study describes the results of the Italian QoLISSY translation, cultural adaptation, and validation.

METHODS

Focus group discussions and a cognitive debriefing process with children (N = 12) diagnosed with growth hormone deficiency or idiopathic short stature and one parent each, as well as parents of younger children (N = 20) were conducted to examine the linguistic and content validity of the Italian version. Psychometric testing was performed using data from the subsequent field- and re-test (N = 32).

RESULTS

The results of the qualitative testing of the Italian sample revealed comparability of content to data of the original five European countries. The following field- and re-test results were psychometrically satisfactory including good item and scale operating characteristics, sufficient evidence of reliability, and acceptable evidence of construct validity.

CONCLUSION

In conclusion, the Italian QoLISSY HrQoL-dimensions are comparable to other European countries. The psychometric quality of the Italian QoLISSY version is satisfactory and the instrument is ready for use in Italian patients and their parents.

摘要

目的

矮小青少年生活质量问卷(QoLISSY)是一种专门针对疾病的工具,用于评估身材矮小儿童的健康相关生活质量(HrQoL)。虽然原始工具是在五个欧洲国家同时开发的,但本研究描述了意大利 QoLISSY 翻译、文化适应性和验证的结果。

方法

通过与患有生长激素缺乏症或特发性身材矮小的儿童(N=12)及其每位家长,以及年龄较小的儿童的家长(N=20)进行焦点小组讨论和认知审阅过程,检验了意大利语版本的语言和内容效度。使用随后的现场和重测(N=32)的数据进行了心理测试。

结果

意大利语样本的定性测试结果显示,其内容与最初的五个欧洲国家的数据具有可比性。以下现场和重测结果在心理测量学上令人满意,包括良好的项目和量表操作特性、足够的可靠性证据和可接受的结构有效性证据。

结论

总之,意大利 QoLISSY 的 HrQoL 维度与其他欧洲国家相当。意大利语 QoLISSY 版本的心理测量质量令人满意,该工具可用于意大利患者及其父母。

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Psychometric performance of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the Netherlands.荷兰青少年矮小症生活质量问卷(QoLISSY)的心理测量学表现。
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Evaluation of the American-English Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the United States.
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Int J Environ Res Public Health. 2023 Aug 11;20(16):6558. doi: 10.3390/ijerph20166558.
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J Endocrinol Invest. 2023 Dec;46(12):2513-2523. doi: 10.1007/s40618-023-02106-3. Epub 2023 May 20.
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Caregiving burden and special needs of parents in the care of their short-statured children - a qualitative approach.照顾矮小儿童的父母的照顾负担和特殊需求——一种定性方法。
Front Endocrinol (Lausanne). 2023 Mar 17;14:1093983. doi: 10.3389/fendo.2023.1093983. eCollection 2023.
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Pediatric growth hormone treatment in Italy: A systematic review of epidemiology, quality of life, treatment adherence, and economic impact.意大利儿科生长激素治疗:系统综述流行病学、生活质量、治疗依从性和经济影响。
PLoS One. 2022 Feb 25;17(2):e0264403. doi: 10.1371/journal.pone.0264403. eCollection 2022.
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