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

Pascal Amedro; Fanny Bajolle; Helena Bertet; Radhia Cheurfi; Dominique Lasne; Erika Nogue; Pascal Auquier; Marie-Christine Picot; Damien Bonnet

doi:10.1016/j.acvd.2017.05.013

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

Arch Cardiovasc Dis. 2018 Mar;111(3):180-188. doi: 10.1016/j.acvd.2017.05.013. Epub 2017 Nov 1.

Authors

Pascal Amedro¹, Fanny Bajolle², Helena Bertet³, Radhia Cheurfi², Dominique Lasne⁴, Erika Nogue⁴, Pascal Auquier⁵, Marie-Christine Picot³, Damien Bonnet²

Affiliations

¹ Pediatric and Congenital Cardiology Department, M3C Regional Reference Center, University Hospital, Physiology and Experimental Biology of Heart and Muscles Laboratory, PHYMEDEXP, UMR CNRS 9214-Inserm U1046, University of Montpellier, Montpellier, France; Self-perceived Health Assessment Research Unit, EA3279, Public Health Department, Aix-Marseille University, Marseille, France. Electronic address: [email protected].
² Pediatric Cardiology Department, AP-HP, Necker-Enfants malades, M3C National Reference Center, Paris Descartes University, Sorbonne Paris Cité, Paris, France.
³ Epidemiology Department, University Hospital, Clinical Investigation Center, Inserm-CIC 1411, Montpellier, France.
⁴ Hematology Laboratory, AP-HP, Necker-Enfants malades, Paris, France.
⁵ Self-perceived Health Assessment Research Unit, EA3279, Public Health Department, Aix-Marseille University, Marseille, France.

PMID: 29100908
DOI: 10.1016/j.acvd.2017.05.013

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.

MeSH terms

Adolescent
Adolescent Behavior
Anticoagulants / administration & dosage*
Anticoagulants / adverse effects
Blood Coagulation / drug effects*
Child
Child Behavior
Child, Preschool
Drug Monitoring / methods*
Female
Health Behavior
Health Knowledge, Attitudes, Practice
Humans
Infant
Infant, Newborn
International Normalized Ratio*
Male
Parents / psychology
Patient Education as Topic / methods*
Predictive Value of Tests
Program Evaluation
Prospective Studies
Quality of Life*
Self Care / methods*
Surveys and Questionnaires
Vitamin K / antagonists & inhibitors*

Substances

Anticoagulants
Vitamin K