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

Amedro, Pascal; Bajolle, Fanny; Bertet, Héléna; Cheurfi, Radhia; Lasne, Dominique; Nogué, Erika; Auquier, Pascal; Picot, Marie‐Christine; Bonnet, Damien

doi:10.1016/j.acvd.2017.05.013

Cited by 24 publications

(37 citation statements)

References 31 publications

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“…Nevertheless, more than two thirds of fathers participated in this study and their mean level of anxiety reached nearly 7 out of 10. In the current era, fathers of children with a CHD have been increasingly involved in their child's health condition, and they accurately evaluate their child's quality of life, as we recently reported . In the literature, more attention has been given to father reports in psychosocial studies.…”

Section: Discussionmentioning

confidence: 88%

“…A recent review of more than 30 articles noticed the impact of a cardiac surgery on the parental mood after prenatal diagnosis and this even far after the birth . When focusing on the parents' perspective, we recently found that the parental assessment of the child well‐being was more pejorative than the child self‐reported well‐being, with relevant differences between fathers' and mothers' assessments . However, we did not evaluate the level of parental anxiety.…”

Section: Introductionmentioning

confidence: 87%

“…In the current era, fathers of children with a CHD have been increasingly involved in their child's health condition, and they accurately evaluate their child's quality of life, as we recently reported. 13 In the literature, more attention has been given to father 26 Nevertheless, an inappropriate timing of the preoperative visit may play a more important role in parental anxiety than the level of medical information itself. 28,29 Material and logistical burdens on a family facing a child's chronic illness may also contribute to increase the level of parental anxiety.…”

Section: Parental Anxietymentioning

confidence: 99%

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Parental anxiety before invasive cardiac procedure in children with congenital heart disease: Contributing factors and consequences

Werner

Louali

Fouilloux

et al. 2019

Congenital Heart Disease

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Objective Medical information provided to parents of a child with a congenital heart disease can induce major stress. Visual analog scales have been validated to assess anxiety in the adult population. The aim of this study was to analyze parental anxiety using a visual analog scale and to explore the influencing factors. Design This prospective cross‐sectional study. Setting Tertiary care regional referral center for congenital heart disease of Marseille—La Timone university hospital. Patients Parents of children with a congenital heart disease, as defined by the ACC‐CHD classification, referred for cardiac surgery or interventional cardiac catheterization, were offered to participate. Intervention and outcome measure The parental level of anxiety was assessed using a visual analog scale (0‐10) before intervention and after complete information given by the cardiologist, the surgeon or the anesthetists. Results Seventy‐three children [7 days‐13 years], represented by 49 fathers and 71 mothers, were included in the study. A total of 42 children required cardiac surgery and 31 children underwent interventional cardiac catheterization. The mean score of maternal anxiety was significantly higher than the paternal anxiety (8.2 vs 6.3, P < .01). A high level of maternal anxiety (visual analog scale > 8) was associated with paternal anxiety (P = .02), the child's comorbidity (P = .03), the distance between home and referral center (P = .04), and the level of risk adjustment for congenital heart surgery (P = .01). In multivariate analysis, maternal anxiety was associated with paternal anxiety (OR = 4.9; 95% confidence interval [1.1‐19.2]), and the level of risk adjustment for congenital heart surgery (OR = 11.4; 95% confidence interval [1.2‐116.2]). No significant association was found between parental anxiety and prenatal diagnosis. Conclusion This study highlighted several factors associated with the parental anxiety. Identifying the parents at risk of high stress can be useful to set up psychological support during hospitalization.

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Section: Discussionmentioning

confidence: 88%

Section: Introductionmentioning

confidence: 87%

Section: Parental Anxietymentioning

confidence: 99%

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Parental anxiety before invasive cardiac procedure in children with congenital heart disease: Contributing factors and consequences

Werner

Louali

Fouilloux

et al. 2019

Congenital Heart Disease

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“…In the continuity of our clinical research program on QoL in patients with CHD [6,14,[30][31][32]34], we expect to observe an improvement of QoL in patients undergoing the transition education program. Patientreported outcomes (PRO) have been increasingly used in clinical research [35], therefore, using QoL as a primary outcome in the TRANSITION-CHD trial seems particularly adapted to such a therapeutic education program.…”

Section: Discussionmentioning

confidence: 97%

“…2.8 Sample size The primary outcome is the change in the self-reported QoL score with the PedsQL instrument. In our previous QoL cross-sectional studies in patients with CHD [14,30,31] as well as in similar studies using patient related outcomes, a difference of less than 5 points seems irrelevant and a difference of more than 10 points is ideal, but rarely obtained in clinical trials [32,33]. Therefore, we hypothesized to observe an increase in the overall QoL score of 7 ± 13.5 points (over 100).…”

Section: Methodsmentioning

confidence: 93%

Impact of a Transition Education Program on the Quality of Life in Pediatric Patients with Congenital Heart Disease: Study Design for a Randomised Controlled Trial

Werner¹,

Bredy²,

Lavastre³

et al. 2020

Preprint

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Background: Recent advances in the field of congenital heart disease (CHD) led to an improved prognosis of the patients and in consequence the growth of a new population: the grown up with congenital heart disease. Until recently, more than 50% of these patients were lost to follow up because of the lack of specialized structures. The critical moment is the transition between paediatric and adult unit. Therapeutic education is crucial to solve this issue by helping patient to become independent and responsible. The TRANSITION randomized trial aims to assess the impact of a transition education program on the quality of life (QoL) of adolescents and young adults with CHD. Methods: multicentre, randomised, controlled, parallel arm study in CHD patients aged from 13 to 25 years old. Patients will be randomised into 2 groups (Education program vs. no intervention). The primary outcome is the change in self-reported QoL between baseline and 12-month follow-up. A total of 100 patients in each group is required to observe a significant increase of the overall QoL score of 7±13.5 points (on 100) with a power of 80% and an alpha risk of 5%. The secondary outcomes are: clinical outcomes, cardiopulmonary exercise test parameters (VO2max,VE/VCO2 slope), level of knowledge, physical and psychological status.Discussion: As the current research is opening on patient related outcomes, and as the level of proof in therapeutic education still low, we sought to assess the efficacy of a therapeutic education program on the QoL of CHD patients with a randomized trial.Trial registration: This study was approved by the National Ethics Committee (South-Mediterranean IV 2016-A01681-50) and was registered on Clinicaltrials.gov (NCT03005626) on 29th December 2016

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Impact of Valve Type (Ross vs. Mechanical) on Health-Related Quality of Life in Children and Young Adults with Surgical Aortic Valve Replacement

et al. 2021

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

Abstract: 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.

Cited by 24 publications

References 31 publications

Parental anxiety before invasive cardiac procedure in children with congenital heart disease: Contributing factors and consequences

Parental anxiety before invasive cardiac procedure in children with congenital heart disease: Contributing factors and consequences

Impact of a Transition Education Program on the Quality of Life in Pediatric Patients with Congenital Heart Disease: Study Design for a Randomised Controlled Trial

Impact of Valve Type (Ross vs. Mechanical) on Health-Related Quality of Life in Children and Young Adults with Surgical Aortic Valve Replacement

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