Pascal Amedro1, Fanny Bajolle2, Helena Bertet3, Radhia Cheurfi2, Dominique Lasne4, Erika Nogue4, Pascal Auquier5, Marie-Christine Picot3, Damien Bonnet2. 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: p-amedro@chu-montpellier.fr. 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.
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.
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.
Authors: Hamouda Abassi; Helena Huguet; Marie-Christine Picot; Marie Vincenti; Sophie Guillaumont; Annie Auer; Oscar Werner; Gregoire De La Villeon; Kathleen Lavastre; Arthur Gavotto; Pascal Auquier; Pascal Amedro Journal: Health Qual Life Outcomes Date: 2020-11-12 Impact factor: 3.186
Authors: Oscar Werner; Charlene Bredy; Kathleen Lavastre; Sophie Guillaumont; Gregoire De La Villeon; Marie Vincenti; Cristelle Gerl; Yves Dulac; Nathalie Souletie; Philippe Acar; Laurence Pages; Marie-Christine Picot; Gerard Bourrel; Agnes Oude Engberink; Elodie Million; Hamouda Abassi; Pascal Amedro Journal: Health Qual Life Outcomes Date: 2021-01-19 Impact factor: 3.186
Authors: Pascal Amedro; Oscar Werner; Hamouda Abassi; Aymeric Boisson; Luc Souilla; Sophie Guillaumont; Johanna Calderon; Anne Requirand; Marie Vincenti; Victor Pommier; Stefan Matecki; Gregoire De La Villeon; Kathleen Lavastre; Alain Lacampagne; Marie-Christine Picot; Constance Beyler; Christophe Delclaux; Yves Dulac; Aitor Guitarte; Philippe Charron; Isabelle Denjoy-Urbain; Vincent Probst; Alban-Elouen Baruteau; Philippe Chevalier; Sylvie Di Filippo; Jean-Benoit Thambo; Damien Bonnet; Jean-Luc Pasquie Journal: Health Qual Life Outcomes Date: 2021-07-28 Impact factor: 3.186