Bauru State Hospital Bauru, Bauru, SP ZIP 17033-360, Brazil.
BMC Pediatr. 2014 Feb 1;14:30. doi: 10.1186/1471-2431-14-30.
Consideration of the quality of life in relation to individual health status is crucial for planning and maintaining a system of patient-centered care. Until recently, there have been no suitable instruments to assess health-related quality of life (HRQoL,) of children and adolescents with severe, non-ambulant cerebral palsy (GMFCS functional levels IV and V). The "Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire" (CPCHILD) was developed in English specifically for this population, and has been validated in Canada. The aim of this study was to translate and adapt the CPCHILD Questionnaire into Brazilian Portuguese, thus permitting researchers in Brazil to access this important tool for measuring HRQoL in this population, as well as the possibility of making comparisons with other studies that use the same questionnaire in other languages.
The cross-cultural adaptation included two forward translations by independent translators, their synthesis, two back-translations by independent translators, an assessment of the versions by an expert committee and the development of a pre-final version, which was tested on 30 caregivers of children (5 -18) with severe cerebral palsy (GMFCS IV & V).
Despite the relative equivalence between the two translations, some items required adaptations for the synthesized version. Certain modifications were necessary in the pre-final version to achieve idiomatic equivalence. The modifications were required to account for the socioeconomic and cultural levels of the target population.
The translation and cross-cultural adaptation of the CPCHILD questionnaire provides a Brazilian Portuguese equivalent to measure the HRQoL of children with severe developmental disabilities, with the potential to measure the benefits of various procedures that are indicated for these patients. This adaptation exhibited a satisfactory level of semantic equivalence between the Portuguese target and the original English source versions. The validity of the Brazilian version of the instrument must be established in the future by assessing its psychometric properties on Brazilian epidemiological samples.
考虑与个体健康状况相关的生活质量对于规划和维持以患者为中心的护理系统至关重要。直到最近，还没有合适的工具来评估患有严重、非活动性脑瘫（GMFCS 功能水平 IV 和 V）的儿童和青少年的健康相关生活质量（HRQoL）。“照顾者优先事项和儿童残疾生活质量指数问卷”（CPCHILD）是专门为这一人群开发的英文工具，在加拿大已经过验证。本研究的目的是将 CPCHILD 问卷翻译成巴西葡萄牙语，并使其适应巴西国情，从而使巴西的研究人员能够使用该重要工具来衡量这一人群的 HRQoL，并且还可以与使用其他语言的相同问卷进行比较。
跨文化适应包括由两名独立翻译人员进行的两次正向翻译、合成、两名独立翻译人员的两次反向翻译、由专家委员会评估版本以及制定预终版，该预终版在 30 名严重脑瘫（GMFCS IV 和 V）儿童的照顾者中进行了测试。
尽管两个翻译版本相对等效，但合成版本仍需要对某些项目进行调整。在预终版中，需要进行一些修改以实现惯用等效。这些修改是为了适应目标人群的社会经济和文化水平。
CPCHILD 问卷的翻译和跨文化适应提供了一种巴西葡萄牙语等效物，可用于衡量严重发育障碍儿童的 HRQoL，并有潜力衡量各种针对这些患者的程序的益处。这种适应在葡萄牙语目标版本和原始英语源版本之间表现出了令人满意的语义等效性。未来必须通过评估该工具在巴西流行病学样本中的心理测量特性来确定该仪器的巴西版本的有效性。
