Parental Mental Health Moderates the Efficacy of Exercise Training on Health-Related Quality of Life in Adolescents with Congenital Heart Disease

Abstract

To evaluate the moderating influence of parental variables on changes in health-related quality of life (HRQoL) in adolescents with Tetralogy of Fallot (ToF) or a Fontan circulation after participation in standardized exercise training. A multicenter randomized controlled trail in which 56 patients, aged 10-15, were randomly allocated (stratified by age, gender, and congenital heart disease) to a 12-week period with either: (a) 3 times per week standardized exercise training or (b) care-as-usual (randomization ratio 2:1). Adolescents and their parents filled in online questionnaires at baseline and at 12-week follow-up. In this randomized controlled trail, primary analyses involved influence of parental mental health and parental social support for exercise on changes in the TNO/AZL Child Quality of Life Questionnaire Child Form at follow-up. Secondary analyses concerned comparing levels of parental characteristics with normative data. Compared with controls, adolescents in the exercise group reported a decrease in social functioning when their parents had more anxiety/insomnia or severe depression themselves. Adolescents also reported a decrease in social functioning when their parents showed poorer overall mental health themselves. Parents reported comparable or even better mental health compared with normative data. The effect of a standardized exercise program on HRQoL changes in adolescents with ToF or a Fontan circulation is moderated by parental mental health, more specifically by parental anxiety/insomnia and severe depression. The trial registration number of this article is NTR2731 ( www.trialregister.nl ).

Cardiac rehabilitation in the paediatric Fontan population: development of a home-based high-intensity interval training programme

“…Numerous studies have demonstrated that youth with CHD, including the Fontan population, have suboptimal physical activity levels, falling short of existing recommendations. 4,[30][31][32] This reduced physical activity may be due in part to restrictions imposed by the child's cardiologist, parents, teachers/coaches, and/or themselves, [33][34][35] as well as numerous perceived barriers by the youth themselves. 5,[36][37][38] Fortunately, clinical recommendations have shifted from one of activity restriction to activity promotion in the CHD population.…”

Determinants of quality of life in children and adolescents with CHD: a systematic review

“…49 To this end, in a recent study, it was stressed that parental mental status had a direct impact on the level of physical activity of children with CHD. 42 Goldbeck and Melches 3 proposed that clinicians should take into account the limited ability of caregivers to recognise the patients' subjective health perception, mainly in less directly observable domains of well-being and functioning.…”

“…50 Moreover, depressive mood seems to have a positive correlation with lower physical and psycho-social quality of life. 42 This is more obvious during adolescence, as depressive symptoms and loneliness affected negatively the quality of life in adolescents with CHD. 45 In general, children with CHD may face significant internalising, externalising, and attention problems compared with the healthy population.…”

“…41 In a recent study, it was noted that parental mental health moderates the efficacy of exercise training on healthrelated quality of life in adolescents with CHD. 42 In a comparative study, at 4 years of age, significant differences were evident between children with CHD and healthy controls. 20 Moreover, the severity of clinical symptoms, the need for haemodynamic or surgical interventions, and the recurrent hospitalisations along with the general health status have a direct effect on quality of life.…”

“…HRQoL of infants and pre-school-age children with CHD is impaired in physical and cognitive dimensions Werner et al 20 Lower QoL was documented in children who had undergone surgery in early infancy Knowles et al 22 Adolescents, after cardiac surgery in early childhood, were found to have reduced cognitive and motor functioning Apers et al 37 Schaefer et al ECMO children reported lower QoL compared with the general population, but similar to that of patients with complex cardiac diseases Guerra et al 39 Costello et al Significant impairments in QoL directly affect clinical decision-making and psycho-social outcomes in children with CHD Tahirović et al 40 Da Fonseca et al 41 Uzark et al 36 Brosig et al 30 Hövels-Gürich et al 31 Spijkerboer et al 32 Culbert et al 33 Determinants 20 Knowles et al 22 Dulfer et al 42 Cassedy et al Apers et al 37 Guerra et al 39 Luyckx et al 44 Luyckx et al 45 Neuner et al 46 Da Fonseca et al 41 Pilla et al 47 Landolt et al 48 Cohen et al 29 Brosig et al 30 Culbert et al 33 Krol et al 34 ECMO = extracorporeal membrane oxygenation; HRQoL = health-related quality of life; QoL = quality of life contrary, five studies 25,26,34,36,48 reported that children with CHD had greater quality of life scores than that reported by their parents. In this context, according to Krol et al 34 "Parents of younger children reported their children to experience more negative emotions than the parents of older children did about their children".…”