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验证照顾者肿瘤患者生活质量问卷在骨髓瘤患者葡萄牙语照顾者中的适用性。

Validation of the caregiver oncology quality of life questionnaire in Portuguese caregivers of myeloma patients.

机构信息

School of Psychology, University of Minho, Braga, Portugal.

Psychology Research Center (CIPsi), University of Minho, Braga, Portugal.

出版信息

Palliat Support Care. 2020 Apr;18(2):178-185. doi: 10.1017/S1478951519000476.

Abstract

OBJECTIVE

Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view.

METHOD

This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support.

RESULT

The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90).

SIGNIFICANCE OF RESULTS

The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.

摘要

目的

癌症诊断对患者、患者家属和照护者有特殊影响。本研究旨在从照护者的角度验证针对多发性骨髓瘤患者照护者的 CareGiver Oncology Quality of Life(CarGOQoL)问卷在葡萄牙语中的适用性。

方法

这是一项横断面研究,纳入了来自葡萄牙北部和中部五家医院门诊肿瘤内科和临床血液科的 146 名多发性骨髓瘤患者的照护者。参与者的生活质量(QoL)、心理困扰和社会支持情况接受了评估。

结果

葡萄牙语版本保留了原始 29 项版本中的 17 项,保持了整体一致性和具有临床可解释性的维度结构。可靠性研究结果表明,总体量表(0.86)和各分量表(0.75 至 0.88)的内部一致性良好,与之前 CarGOQoL 验证研究中相应分量表(0.74 至 0.89)和总体量表(0.90)的 alpha 值一致。

结果的意义

CarGOQoL 是一种可靠和有效的工具,可用于临床试验和干预计划,以评估骨髓瘤患者照护者的 QoL。未来的研究应在其他类型的癌症患者包括其他慢性病患者的照护者中验证该改编版本。

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