Tests of transcultural equivalence and understanding of the argentine version of cp-qol-pcq for child and adolescent population with cerebral palsy.

Abstract

There are no specific health-related quality of life instruments for people with cerebral palsy in Argentina. The Australian CP-QOL (Cerebral Palsy Quality of Life) for children and adolescents has good metric properties, then we began the transcultural adaptation of the version addressed to caregivers (PCQ, Primary Caregiver Questionnaire).

The aim of this study was to verify the cross-cultural equivalence and the understanding of the CP QOL-PCQ questionnaire adapted for the Argentine population.

The cross-cultural adaptation method included the forward translation and semantic equivalence assessment by a professional linguist; consensus with control of equivalence by a group of experts, and consultation with Australian authors; backward translation and comparison with the original version in a second consensus; and comprehension tests through cognitive interviews in a sample of 6 caregivers of patients aged 4 to 18, who attend private therapeutic centers in Córdoba.The equivalence of meanings (semantics), concepts (cultural), experiences (practice) and understanding by paraphrasing and other techniques was verified by mean of the discourse analysis of consensus meetings and interviews.

In the direct translation and first consensus, cultural and practical equivalence were questioned in 15 of a total of 98 items, of which 8 were modified (eg, the word “caregivers” was replaced by “assistants”). After the reverse translation and second consensus, difficulties were detected in 9 items, mostly of semantic equivalence, which were modified with contributions from the Australian authors (eg, “respite care” translated as “replacement of caregiver”, was modified to “relay in care"). During the application of the preliminary version for cognitive interviews, few difficulties of understanding and cultural equivalence arose, then 5 items were modified (eg: “do you feel upset with the visits in the hospital”? It was replaced by “do you feel upset with the visits to the doctor?”).

The process of cross-cultural adaptation with the participation of experts in cerebral palsy, original authors and target population of the questionnaire helped to solve semantic, cultural and practical difficulties that would not be detected with a simple translation. A version of the CP-QOL-PCQ adapted to the Argentine population and equivalent to the original Australian version was thus achieved