Growing Up with Haemophilia: Quality of Life and School Functioning of a Group of Mexican Adolescents.

Abstract

Haemophilia, like many other chronic rare diseases, causes limitations to daily activities, stunting the growth and impairing the quality of life as well as the psychosocial functioning and education of those affected. However, these consequences are distributed differently among those affected depending on the available contextual resources. The aim of this study was to analyse the variables associated with the academic functioning and quality of life of a group of 57 Mexican adolescents ( $\overline{x}$ = 14,16 years old; SD = 1,91) suffering from haemophilia, in order to identify specific protective factors. Two tools were employed, an ad hoc questionnaire to collect general data and the Paediatric Quality of Life Questionnaire (PedsQL). The participants reported repercussions such as pain (75.4%), having difficulties walking (19.3%) and building relationships with other adolescents (17.5%), missed school days (78.9%), and/or having trouble keeping up with academic activities (38.6%). Adolescents with Type A Haemophilia displayed higher levels on the scales investigating social relations (t = 2,356; p < 0,05; δ = 1,44), academic functioning (t = 3,713; p < 0,01; δ = 2,27), psychosocial health (t = 2,561; p < 0,05; δ = 1,56), and total health-related quality of life (HRQoL) (t = 2,467; p < 0,05; δ = 1,49) than their peers with Type B. The results indicate that haemophilia has an impact on the adolescents' global development and their academic performance; however, this impact is reduced by the presence of some of contextual variables/resources.