Abstract
BackgroundConsideration 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.MethodThe 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).ResultsDespite 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.ConclusionThe 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.
Highlights
Consideration of the quality of life in relation to individual health status is crucial for planning and maintaining a system of patient-centered care
The translation and cross-cultural adaptation of the CPCHILD© questionnaire provides a Brazilian Portuguese equivalent to measure the Health-related quality of life (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
Summary
Consideration of the quality of life in relation to individual health status is crucial for planning and maintaining a system of patient-centered care. In Brazil, 24.5 million people present some kind of disability, including children with cerebral palsy [4]. Between 25% and 35% of affected children are severely affected and they exhibit health problems, difficulties with everyday life activities, communication, mobility, and are dependent on caregivers for the majority of their needs. These circumstances strongly impact the patients’ lives, the lives of their caregivers and relatives and the institutions that are responsible for their care and wellbeing [6,7,8]
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