Measuring adherence in pediatric hemophilia patients: French-language adaptation of the VERITAS-Pro and VERITAS-PRN and psychometric properties

Abstract

Abstract Veritas-Pro and Veritas-PRN are instruments to assess adherence to treatment of people with hemophilia. Low adherence can limit treatment effectiveness and result in increased bleeding episodes and chronic pain. The purpose of this study was to adapt both questionnaires into French, report preliminary psychometric data in a group of pediatric patients and their parents, and compare ratings between young patients and their parents. The translation process followed these steps: (1) forward translation (2) backward translation (3) final version, and (4) testing. Translators were familiar with the pediatric community. Thirteen pediatric patients and twenty parents participated in the study. The translation process was conducted without major difficulties, and children easily understood the French versions. Preliminary psychometric analyses showed good to excellent consistency for the total scale and most subscales. However, the consistency of the Dose (VERITAS-Pro) and the Plan (VERITAS-PRN) subscales were low. When pediatric patients were primary infusers, they reported more skipping of prophylaxis than in parents’ estimation of their behavior. For episodic treatment, when parents were primary infusers, they reported better adherence for the Time subscale vs. children’s estimation of their behavior. Parents also rated higher adherence on prophylaxis when they were themselves in charge of performing the infusions than when young patients were autonomous. Preliminary psychometric analyses support the use of the French versions for the total scale and most subscales. However, the results did not support the use of the subscales Dose (VERITAS-Pro) and Plan (VERITAS-PRN) in the adapted versions. Further studies should be performed on larger samples.