Health-Related Quality of Life Outcomes in Children and Adolescents with Congenital Heart Disease

Mellion, Katelyn; Uzark, Karen; Cassedy, Amy; Drotar, Dennis; Wernovsky, Gil; Newburger, Jane W.; Mahony, Lynn; Mussatto, Kathy A.; Cohen, Mitchell I.; Limbers, Christine A.; Marino, Bradley S.

doi:10.1016/j.jpeds.2013.11.066

Cited by 159 publications

(196 citation statements)

References 36 publications

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“…Thus, these results support the suggestions in the literature emphasizing more the importance to focus on the disease's impact on psychosocial dimensions, and less on the diagnostic categories/physical dimensions (Denny et al, 2014;Mackner et al, 2012;van der Lee et al, 2007). In addition, the results underline previous research recommendations, namely the need to include psychosocial factors in complement of health indicators (Health, 2013;Watson, 2014), and the relevance of routinely conduct its assessment in clinical and pediatric settings (Mellion et al, 2014;Moreira et al, 2013;Williams et al, 2013). However, it may be suggested somehow a relationship between SR, the educational level of parents and the clinical variables (that need to be studied with more detail), considering that this psychosocial variable was no longer significant in the step 1 of Model 1 and in step 2 of both Model 1 and Model 2.…”

Section: Discussionsupporting

confidence: 87%

“…Also reinforce the suggestions in the literature to assess both disease related and non-disease-related factors (Sawyer et al, 2001), including physical, psychological and social perspectives (WHO, 2012), as well as limitations in ordinary activities (Denny et al, 2014;van der Lee et al, 2007). In addition, these results highlight that adolescents living with a chronic condition may have a high risk for poor perceptions of HRQoL, also pointed out in previous research (Alba et al, 2013;Elsenbruch et al, 2013;Mellion et al, 2014;Payot & Barrington, 2011;Varni et al, 2007).…”

Section: Discussionsupporting

confidence: 83%

“…However, living with chronic disease in adolescence still have a significant high risk for poor Quality of Life (QoL) and health-related quality of life (HRQoL) (Alba et al, 2013;Elsenbruch, Schmid, Lutz, Geers, & Schara, 2013;Mellion et al, 2014), particularly in psychological functioning (Moreira et al, 2013;Santos, Matos, Simões, & Machado, 2015;Williams, Sharpe, & Mullan, 2013) and social dimensions (Carona, Moreira, Silva, Crespo, & Canavarro, 2014;Compas, Jaser, Dunn, & Rodriguez, 2012). HRQoL is generally conceptualized as a multidimensional psychological construct including physical, mental, social and spiritual areas of life and general well-being (Eiser & Morse, 2001;Ravens-Sieberer et al, 2001;2005).…”

Section: Introductionmentioning

confidence: 99%

“…Recent literature has enlightened disease-specific determinants of HRQoL, such as physical ability, pain, subjective burden of medication use (Haverman et al, 2012), diagnosis (Herzer, Denson, Baldassano, & Hommel, 2011;J. Wang, Y. Wang, L. B. Wang, Xu, & Zhang, 2012;Zashikhina & Hagloff, 2014), severity of the disease (Mellion et al, 2014;Vanhalst et al, 2013;Zashikhina & Hagloff, 2014), school absence (Cortina et al, 2010;Haverman et al, 2012) and illness perception (Williams et al, 2013). In addition, non-disease factors were also considered determinants for HRQoL, namely anxiety/depression (Velasco, Martín, Díez, Pérez, & Amigo, 2012), gender (Williams et al, 2013;Zashikhina & Hagloff, 2014), age (Alba et al, 2013;Moreira et al, 2013;Zashikhina & Hagloff, 2014), socioeconomic status (Herzer et al, 2011;Zashikhina & Hagloff, 2014), quality of peer relationship (Rassart et al, 2012), social interaction/social support (Carona et al, 2014;Elsenbruch et al, 2013;Vanhalst et al, 2013) and parents' support (Békési et al, 2011;Williams et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

“…As a result, chronic disease's assessment should be less focused on diagnostic categories (more prone to variability), and more centered on the impact that the disease might have on the socialization process, emotional health, and general limitations in ordinary activities (Denny et al, 2014;van der Lee, Mokkink, Grootenhuis, Heymans, & Offringa et al, 2007). Supporting this idea, clinical settings have been progressively recognizing the need to complement traditional health indicators with psychosocial factors (Health, 2013;Watson, 2014), which requires a routinely assessment in pediatric contexts (Mellion et al, 2014;Moreira et al, 2013). Moreover, to include such factors in clinical decision making and research is necessary, mainly once to manage symptons and to improve psychosocial care are nowadays primary goals of interventions (Elsenbruch et al, 2013;Health, 2003;Marmot et al, 2012;Pulkki-Råback et al, 2015;Watson, 2014).…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

Do Clinical And Psychosocial Factors Affect Health-Related Quality of Life in Adolescents with Chronic Diseases?

Santos¹,

Matos²,

Marques³

et al. 2017

GJHS

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Living with a chronic disease in adolescence can have an impact on the perception of Health-related Quality of Life (HRQoL). Facing the increasing relevance of psychosocial dimensions and also considering the interaction with clinical variables, this study aimed to measure the impact of clinical and psychosocial factors (separated and combined) on adolescent's reported HRQoL.A cross-sectional study was conducted in a clinical population of 135 adolescents with chronic diseases (n=70 boys), average age: 14±1.5 years old. Through a self-reported questionnaire, HRQoL (KIDSCREEN-10), socio-demographic, clinical variables (diagnostic; time of diagnosis; self-perceived pain; disease severity proxy; disease-related medication intake/use of special equipment), and psychosocial variables (psychosomatic health; resilience; self-regulation; social support) were assessed.Separately, clinical and psychosocial variables showed a significant impact in HRQoL, 27.9% and 62.4%, respectively. Once combined, the previously identified variables had a significant impact (64.2%), but a different contribution from clinical and psychosocial variables was revealed: when first entering the clinical variables (model 1) the variance only reaches 30%, and much more from psychosocial variables seems to explain the total (64.2%); inversely, when first integrating psychosocial variables (model 2), the clinical ones added a small significance to the model (0.6%).The present study underlined the association of clinical ("disease-related") and psychosocial ("non-disease-related") factors on HRQoL. Furthermore, it reinforced the need to focus more on psychosocial dimensions, highlighted the potential role of psychosomatic health, resilience, self-regulation and social support. It can be suggested that the identification of impaired psychosocial domains may help professionals to better plan, and achieve effective interventions of psychosocial care.

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Section: Discussionsupporting

confidence: 87%

Section: Discussionsupporting

confidence: 83%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Do Clinical And Psychosocial Factors Affect Health-Related Quality of Life in Adolescents with Chronic Diseases?

Santos¹,

Matos²,

Marques³

et al. 2017

GJHS

View full text Add to dashboard Cite

show abstract

A systematic review and meta‐analysis of school and cognitive function domains of health‐related quality of life measures for children and young adults with congenital heart disease

Mamasoula,

Pennington,

Adesanya

et al. 2023

Birth Defects Research

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BackgroundResearch on cognitive and school functioning domains of health‐related quality of life (HRQOL) for children and adolescents with congenital heart disease (CHD) presents inconsistencies.ObjectivesTo summarize and synthesize data on school and cognitive function domains of HRQOL for children and young people (CYP) with CHD.MethodsFive electronic databases MEDLINE, Scopus, PsycINFO, EMBASE, ERI, and citations were systematically searched. We included original‐research articles reporting the cognitive and school function domains of HRQOL for children and young people with CHD (child and parent reports included). Both fixed and random‐effects meta‐analyses were performed to estimate pooled mean test scores for cognitive and school function. A total of 34 studies met our inclusion criteria and were synthesized narratively, 17 studies were included in formal meta‐analyses.ResultsSelf‐reported cognitive function was lower for children and young people with CHD than healthy controls (SMD −0.28 (−0.42, −0.15)). Parental reports demonstrated similar results to self‐reports (SMD −0.54 (−0.91, −0.18)). School function was lower in children and young people with CHD compared with healthy controls in self‐reported (SMD −0.30 (−0.48, −0.13)) and parent reported HRQOL (SMD −0.49 (0.64, −0.36)). Self‐reported school function domain scores were lower for young (<8 years) (SMD −0.65 (−1.32, 0.03)) and older children (8–18 years) (SMD −0.25 (−0.47, −0.03)) with CHD than their peers. Similarly, parents reported lower school function domain scores for young (<8 years) (SMD −0.68 (−1.29, −0.07)) and older (8–18 years) (SMD −0.46 (−068, −0.25)) children with CHD than typically developing peers.ConclusionChildren born with CHD may experience lower cognitive and school function HRQOL scores than healthy controls (self and proxy‐report). This is consistent with a subgroup meta‐analysis of young (<8 years) and older (8 years old or more) children with CHD reporting lower school function scores compared to controls.

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A guide to prenatal counseling regarding neurodevelopment in congenital heart disease

et al. 2023

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Advances in cardiac surgical techniques taking place over the past 50 years have resulted in the vast majority of children born with congenital cardiac malformations now surviving into adulthood. As the focus shifts from survival to the functional outcomes of our patients, it is increasingly being recognized that a significant proportion of patients undergoing infant cardiac repair experience adverse neurodevelopmental (ND) outcomes. The etiology of abnormal brain development in the setting of congenital heart disease is poorly understood, complex, and likely multifactorial. Furthermore, the efficacy of therapies available for the learning disabilities, attention deficit, and hyperactivity disorders and other ND deficits complicating congenital heart disease is currently uncertain. This situation presents a challenge for prenatal counseling as current antenatal testing does not usually provide prognostic information regarding the likely ND trajectories of individual patients. However, we believe it is important for parents to be informed about potential issues with child development when a new diagnosis of congenital heart disease is disclosed. Parents deserve a comprehensive and thoughtful approach to this subject, which conveys the uncertainties involved in predicting the severity of any developmental disorders encountered, while emphasizing the improvements in outcomes that have already been achieved in infants with congenital heart disease.A balanced approach to counseling should also discuss what local arrangements are in place for ND follow-up. This review presents an up-to-date overview of ND outcomes in patients with congenital heart disease, providing possible approaches to communicating this information to parents during prenatal counseling in a sensitive and accurate manner. Key pointsWhat is already known about this topic? � The heart is the organ most commonly affected by birth defects.� Neurodevelopmental (ND) disorders frequently affect children with congenital heart disease, with those with genetic syndromes and single ventricle hearts most severely affected, although even mild forms of heart disease confer some risk. What does this review add?� This review summarizes current knowledge regarding the prevalence, etiology, and risk factors for ND disorders in patients with congenital heart disease across the lifespan.

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Health-Related Quality of Life Outcomes in Children and Adolescents with Congenital Heart Disease

Cited by 159 publications

References 36 publications

Do Clinical And Psychosocial Factors Affect Health-Related Quality of Life in Adolescents with Chronic Diseases?

Do Clinical And Psychosocial Factors Affect Health-Related Quality of Life in Adolescents with Chronic Diseases?

A systematic review and meta‐analysis of school and cognitive function domains of health‐related quality of life measures for children and young adults with congenital heart disease

A guide to prenatal counseling regarding neurodevelopment in congenital heart disease

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