Importance of literacy for self-reported health-related quality of life: a study of boys with haemophilia in Brazil

Abstract

Psychosocial outcomes are important in the perspective of boys with haemophilia. However, health-related quality of life (HRQoL) is based on self-report, and assumes adequate literacy. Yet, literacy is rarely assessed prior to data collection. This study sought to identify criteria that might indicate the level of literacy of children being recruited for clinical trials and to develop a simple method to prescreen those whose literacy was uncertain. We developed a brief screening tool in the form of two stories, at a grade 3 reading level, followed by comprehension questions. We applied the screening test to a sample of haemophilic boys between the ages of 7 and 13 years to assess their literacy. The data were analysed to determine the best criteria to use in identifying the ability to independently self-report for HRQoL studies. Twenty-four Brazilian boys (7.9-12.8) completed the testing. The results showed that 17 (70.8%) were literate (were able to both read and comprehend), and could complete a questionnaire without assistance. All boys over 11.0 years of age were sufficiently literate. Grade level was not found to be a helpful criterion. We recommend that all children under the age of 11.0 years be prescreened before providing self-reported HRQoL data. Those with limited literacy should be provided assistance to ensure comprehension of the questions. This is important to ensure high-quality data on HRQoL for future clinical trials.

Cross-cultural adaptation and validation of the Canadian Haemophilia Outcomes-Kids’ Life Assessment Tool (CHO-KLAT) in Côte d’Ivoire (the Ivory Coast)

“…All CHO-KLAT 2.0 items were globally well understood by the five boys and their parents. However, similar to the experience of the adaptation of CHO-KLAT 2.0 in Brazil [28], we observed significant variability in reading skills among BWHs during the cognitive debriefing interviews. In the team review meeting after the 3rd and 5th cognitive debriefing interviews, consistent concerns were voiced, which resulted in four minor modifications to the wording of five items (14.2% of the items modified).…”

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

“…After extensive discussion, it was decided that not all children in the 7–18 age range would have attained a literacy level sufficient to complete the questionnaire independently. This issue is addressed in a related article .…”

Validity of the Portuguese CHO‐KLAT in Brazil

“…In addition, participants must have been free from clinically determined bleeding for 2 weeks prior to entering the study. All participants were screened for literacy and assistance was provided to those who had limitations in literacy .…”