Quality of life in children participating in a non-selective INR self-monitoring VKA-education programme

Abstract

Background: The quality of life (QoL) of children receiving vitamin K antagonist (VKA) treatment has been scarcely studied.

Aim: To assess QoL of children, and its evolution, throughout our non-selective international normalized ratio (INR) self-monitoring education programme.

Methods: Children and parents completed QoL questionnaires (Qualin, PedsQL) during education sessions. Scores were compared with those from controls.

Results: A total of 111 children (mean±standard deviation age 8.7±5.4 years) were included over a 3-year period. Indications for VKA treatment were congenital heart diseases (valve replacement [42.3%], total cavopulmonary connection [29.7%]), myocardiopathy (11.7%), coronary aneurysm (7.2%), venous/intracardiac thrombosis (4.5%), pulmonary artery hypertension (1.8%), arrhythmia (0.9%) and extra-cardiac disease (1.8%). Eighty children, 105 mothers and 74 fathers completed the QoL questionnaires. QoL was good among children aged 1-4 years and moderately impaired in those aged between 5 and 18 years. There was no significant relationship between self-reported QoL and patient's sex, type of VKA, number of group sessions attended, disease duration or time of diagnosis (prenatal or postnatal). QoL scores were significantly lower among children with congenital heart diseases compared with other diseases. There were few differences in QoL between children under transient VKA treatment and those treated for life. Parental proxy QoL scoring correlated well with but was significantly lower than child self-assessments. QoL reported by mothers increased throughout the education programme, independently of any improvement of the health condition.

Conclusions: This QoL study provides original data from a large cohort of children and their parents participating in a formalized INR self-monitoring education programme for VKA treatment.

Keywords: Antivitamines K; INR; Paediatrics; Patient education; Pédiatrie; Quality of life; Qualité de vie; Vitamin K antagonist; Éducation thérapeutique du patient.