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巴西血友病患者的功能性能力问卷血友病活动清单的翻译、验证和可靠性。

Translation, validation and reliability of the functional capacity questionnaire Haemophilia Activities List for haemophilia patients in Brazil.

机构信息

Orthopedic/Hemophilia Ambulatory, HC/UFPR, Curitiba, Brazil.

Hemepar and Orthopedic/Hemophilia Ambulatory, HC/UFPR, Curitiba, Brazil.

出版信息

Haemophilia. 2019 Jul;25(4):e231-e239. doi: 10.1111/hae.13760. Epub 2019 May 1.

Abstract

INTRODUCTION

To date, none of the available assessment instruments to evaluate functional abilities for individuals with haemophilia has been translated and validated in Brazil.

AIM

To translate, and test the construct validity, internal consistency and the reliability of the Haemophilia Activities List (HAL) for the Brazilian population with severe and moderate haemophilia (type A or B) and to investigate differences in the self-perception of functional abilities in patients adults with haemophilia classified according to the presence of joint bleeding and the performance of orthopaedic surgeries.

METHODS

The translation and transcultural adaptation following the steps: (a) translation; (b) synthesis (consensual version); (c) back-translation; (d) review by the committee of experts; (e) pretest in the target population; and (f) final version of the instrument. Correlations between HAL scores and the scores of the Health Assessment Questionnaire (HAQ) and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) were determined for construct validation. Reliability was tested using the test and retest method, and internal consistency was calculated by Cronbach's α.

RESULTS

The HAL-BR was applied to 52 individuals with haemophilia (34.51 ± 12.87 years). The process of translation and cross-cultural adaptation produced similar versions between the translations A moderate correlation was observed between HAL and the HAQ (r = -0.55) and WOMAC scores (r = -0.58). The reliability was ICC = 0.972, CI (0.917-0.997) ICC = 0.876, CI (0.631-0.978) for inter- and intra-examiners. No difference was found in the total HAL score between the groups with and without bleeding. The group subjected to surgery compared to the group of not subjected to surgery presented in the HAL domains worse function in 'lying down/sitting/kneeling/standing', 'self-care' and 'complex lower extremities activities' as well as in total HAL score.

CONCLUSION

The Brazilian version of the HAL was proven to be a valid and reliable evaluation tool for adults with haemophilia in Brazil.

摘要

简介

迄今为止,还没有任何可用的评估工具可以评估巴西的血友病患者的功能能力,且这些评估工具都没有被翻译成并验证为巴西版本。

目的

翻译并测试血友病活动清单(HAL)在巴西重度和中度血友病(A型或 B 型)患者中的结构有效性、内部一致性和可靠性,并调查根据关节出血情况和矫形手术表现对血友病患者自我感知功能能力的差异进行分类。

方法

翻译和跨文化适应遵循以下步骤:(a)翻译;(b)综合(共识版本);(c)回译;(d)专家委员会审查;(e)在目标人群中进行预测试;(f)工具的最终版本。为了进行结构验证,确定了 HAL 评分与健康评估问卷(HAQ)和西部安大略省和麦克马斯特大学骨关节炎指数(WOMAC)之间的相关性。使用测试-再测试法测试可靠性,并使用 Cronbach 的 α 计算内部一致性。

结果

HAL-BR 应用于 52 名血友病患者(34.51 ± 12.87 岁)。翻译和跨文化适应过程产生了相似的版本。在 HAL 与 HAQ(r=-0.55)和 WOMAC 评分(r=-0.58)之间观察到中度相关性。可靠性为 ICC=0.972,CI(0.917-0.997);ICC=0.876,CI(0.631-0.978),用于内部和外部检查者。在有出血和无出血的组之间,HAL 总分没有差异。与未接受手术的组相比,接受手术的组在“躺下/坐下/跪下/站立”、“自我护理”和“复杂下肢活动”以及 HAL 总分的域中功能更差。

结论

巴西版 HAL 被证明是巴西血友病成人有效的、可靠的评估工具。

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