Process and experience of cross-cultural adaptation of a quality of life measure (CHO-KLAT) for boys with haemophilia in Brazil

Abstract

Health-related quality of life (HRQoL) is an important outcome from the perspective of boys with haemophilia and their parents. Few studies have captured the HRQoL of boys with haemophilia in developing countries. This article reports on the cross-cultural adaptation of the Canadian Haemophilia Outcomes - Kids Life Assessment Tool (CHO-KLAT) for use in São Paulo, Brazil. The CHO-KLAT(2.0) was translated into Portuguese, and then translated back into English. The original English and back-translation versions were compared by a group of three clinicians, whose first language was Portuguese. The resulting Portuguese version was assessed through a series of cognitive debriefing interviews with children and their parents. This process identified concepts that were not clear and revised items to ensure appropriate understanding through an iterative process. The initial back-translation was not discrepant from the original English version. We made changes to 66% of the CHO-KLAT(2.0) items based on clinical expert review and 26% of the items based on cognitive debriefings. In addition, two new items were added to the final Portuguese version to reflect the local cultural context. The final result had good face validity. This process was found to be extremely valuable in ensuring the items were accurately interpreted by the boys/parents in São Paulo Brazil. The results suggest that professional translators, clinical experts and cognitive debriefing are all required to achieve a culturally appropriate instrument. The Portuguese CHO-KLAT(2.0) is well understood by Sao Paulo boys/parents. The next step will be to test its validity and reliability locally.

Translation, cross-cultural adaptation and validation of the Norwich Patellar Instability score for use in Brazilian Portuguese

“…The translation and cultural adaptation of the NPI score followed the procedure proposed by Price et al 15 This procedure was adapted from Guillemin et al, 18 Bullinger et al 19 and Beaton et al 20 This procedure was used because: (1) patellofemoral instability comprises only 2%-3% of all knee injuries 1 and, therefore, the affected individuals constituted a rare population; and (2) several authors have successfully used this procedure in other translation, validation and cultural adaptation processes. [21][22][23] The Kujala patellofemoral disorder score 12 and the Lysholm knee score 10 are among the scores most used for evaluation of patellofemoral dysfunction in studies aiming to evaluate the efficacy of treatments for this condition. [24][25][26] Both of these scores contain only a single item on knee instability, and only the first of them has an item on patellofemoral instability.…”

Validity of the Portuguese CHO‐KLAT in Brazil

“…The CHO‐KLAT was cross‐culturally adapted for Brazil in 2012 . During the adaptation of the CHO‐KLAT for Brazil , two additional questions were added to the survey to yield a 37 item questionnaire, the CHO‐KLAT 37 . These related to participating in activities that boys in Brazil enjoy and a feeling that their family helped them with their haemophilia.…”

Relevance of the Aboriginal Children’s Health and Well-being Measure Beyond Wiikwemkoong

“…The adaptation process is important to ensure that the measure's interpretation and meaning is congruous across different cultures. This article follows the guidelines published by Price et al (2009), which have previously been applied by members of this team (NLY and TAB) [18][19][20][21][22] .…”