Agreement between self-, mother and father proxy-reports on health-related quality of life in adolescents with Tourette syndrome

Abstract

This study aimed to investigate agreement and discrepancies between parent proxy- and adolescent self-reports on assessments of adolescents’ health-related quality of life (HRQoL), and the role that individual factors may play in parent-adolescent agreement, in a sample of adolescents with Tourette syndrome (TS) compared to a control group of healthy adolescents. Adolescents aged 12–18 years diagnosed with TS were recruited with their parents from primary and secondary referral centres. Adolescent healthy controls were matched for gender and age. Adolescents and each of their parents completed a set of questionnaires including a HRQoL evaluation of adolescent, the ‘Vécu et Santé Perçue de l’Adolescent’. Mother-adolescent, father-adolescent and mother-father agreements on adolescents’ HRQoL scores were investigated at individual and group level, both in TS and control groups. Data were available for 75 adolescents, 75 mothers and 63 fathers, in the TS group. Agreement between mother, father proxy-reports and TS adolescents self-reports of HRQoL varied from poor to good, without significant difference with the control group. In TS group, mothers and fathers underestimated adolescents’ HRQoL in ‘Psychological well-being’ subscale and mothers underestimated it in ‘Physical ‘well-being’ subscale, while controls overestimated adolescents’ HRQoL in these subscales. Larger mother-adolescent discrepancies for ‘Psychological well-being’ and ‘Physical well-being’ subscales were associated with internalizing symptoms. Regarding future studies, comprehensive evaluation of the various dimensions of adolescents’ HRQoL with TS requires the integration of the perspectives of both adolescents, mothers and fathers. Clinicians should take into account this point to provide comprehensive care and services.