Abstract
Evaluating the relation of non-cardiac comorbidity and socio-demographic factors to physical and mental health-related quality of life (QOL) which has been partially found at elevated risk in young adults after neonatal arterial switch operation (ASO) for transposition of the great arteries (TGA). In a prospective reassessment study, results of 92 unselected young adults (22.8 ± 2.6 years) having undergone evaluation of QOL (SF-36) were related to non-cardiac comorbidity with special respect to neurologic and psychiatric comorbidity and to socio-demographic parameters. Neurologic (14%) contrary to psychiatric comorbidities (6.5%) were more frequent than in the general population. The educational level was higher, the rate of unemployment was double as high compared to the average German population. Significant inverse relations (p = 0.006 to 0.033) existed between physical health domains (physical functioning and general health perception) and non-cardiac, neurologic, and psychiatric comorbidity, as well as correlations between the latter domains and socio-economic status, educational level, and worse employment status (Spearman 0.22–0.41, p < 0.0001 to 0.036). Mental health domains (vitality, social functioning, psychical health) were significantly inversely related with neurologic and psychiatric comorbidity (p = 0.002 to 0.048) and correlated with higher educational level (Spearman 0.25, p = 0.019). Neurologic and psychiatric comorbidities and socio-demographic parameters are significant risk factors for a reduced QOL concerning physical and mental health in young adults with TGA after ASO. Standardized QOL measurement should be part of routine screening programs to detect subclinical physical, neurodevelopmental, and psychosocial comorbidity.
Graphical abstract
Similar content being viewed by others
Avoid common mistakes on your manuscript.
Introduction
With a prevalence of almost 1% of live births, congenital heart defects (CHD) represent the most common isolated human malformation. Simple transposition of the great arteries (TGA) is the most common cyanotic heart defect in newborns, accounting for around 3–5% of congenital heart defects. Untreated, TGA results in very poor short-term survival rates. Therefore, the arterial switch operation (ASO) in newborns has been established as the surgical method of choice for early anatomical correction since the late 1980s. The aorta and pulmonary artery are swapped proximally, and the coronary arteries are reimplanted. The surgical method has a high long-term survival rate of over 90% and promises an almost normal physical performance with an overall good long-term course on the part of the heart [1]. A good 30 years after the world's first operations of this type, there is a growing number of young adults whose long-term quality of life (QOL) is the focus of interest on an equal level with the cardiac functional status [2, 3]. However, despite good long-term cardiologic results, an increased incidence of cognitive, neuropsychologic and psychiatric issues has emerged in this patient group [4,5,6] influencing the psychosocial domains of their self-rated health-related quality of life (HRQOL). Partly independent of the severity of the heart defect, both physical and psychosocial morbidity can significantly influence QOL in adult patients with congenital heart disease (ACHD) [7,8,9,10,11].
In the context of our institution’s extensive ASO reassessment program since 1997 [12,13,14], we have recently shown, that despite maintained, normal to low normal average outcomes for self-rated physical and mental QOL, an increased proportion of this cohort of young adults is at significantly elevated risk for QOL difficulties and impairments (scores below the first and second negative standard deviation, resp.), especially with respect to social and emotional functioning as well as to physical functioning and general health perception. Subjective (New York heart association (NYHA) functional class) and objective (cardiopulmonary exercise test capacity) markers of heart failure have recently been evaluated as significant risk factors [15]. The present study aimed to assess associations between our patients’ self-perceived QOL and socio-demographic as well as non-cardiac comorbidity as possible additional risk factors.
Methods
Demographic, surgical and cardiologic follow-up data
This monocentric prospective study consisted of 92 unselected young adults who had undergone ASO for simple TGA as neonates, aged 18–29 (mean 23) years at reevaluation. The surgical procedure of neonatal ASO was performed as described previously [12]. Surgical and cardiologic follow-up data have been recently reported [15]. At the time of reassessment, 7 patients. (7.6%) had undergone a total of 8 cardiac reoperations during childhood or adolescence, and 10 pts. (10.9%) a total of 15 catheter interventions. 4 patients (4.3%) were on cardiovascular medication (beta blocker, afterload-lowering). 88% of the patients were in NYHA class I without limitation, 12% in class II with mild limitation in daily life. The evaluation was performed prior to the Corona pandemic.
The study was designed as a case series with published controls and prognostic factor analyses. The study protocol conforms to the ethical guidelines of the 1975 Declaration of Helsinki as reflected in a priori approval by the local Ethical Medical Committee (Medical Faculty RWTH Aachen university, Nr. EK 243/14). Written informed consent was obtained from each patient.
Socio-demographic factors
Socio-demographic factors like socio-economic status [16, 17], educational level, profession degree including employment status as well as family status were collected by a standardized questionnaire and comparisons to the current German population were made, where available (Table 1).
Non-cardiac comorbidity
A standardized questionnaire assessed the incidence of non-cardiac comorbidity with special respect to neurologic and psychiatric morbidity, as well as non-cardiac therapy including medication and psychotherapy. Comparisons to the current German population were made, where available (Table 1).
Quality of life results related to socio-demographic factors and non-cardiac comorbidity
Our recently reported results of standardized evaluation of QOL (SF-36) [15] as a generic measure of subjective health status [18] were related to socio-demographic and to non-cardiac comorbidity factors (Table 2) aiming at the detection of potential non-cardiac risk factors for a reduced QOL outcome.
Statistical analysis
Results were expressed by mean values and standard deviation (m ± SD), median and interquartile ranges, minimal and maximal values, or as percentages.
Chi-squared tests were used to test for differences between frequencies (socioeconomic status classes: patients vs norm [16, 17], representing an ordinal scale).
Univariate correlation analyses (Spearman correlation coefficients) were applied to analyze continuous variables to study the impact of influencing factors from socioeconomic status on SF-36 outcome parameters.
The significance of discrete non-cardiac comorbidity status variables on SF-36 outcome parameters was calculated by means of Kruskal–Wallis tests and presented as box plots.
For additional multivariable analyses, outcome parameters of the SF-36 dimensions were modeled using generalized linear models with a logit link function. Outcomes were scaled to range between 0 and 1. For each dimension score separate models were built using: (1) predictors of socioeconomic parameters, (2) non-cardiac comorbidity status parameters. Models were fitted using Maximum Likelihood estimation.
Statistical analysis was performed with the SPSS for Windows software, version 26 (SPSS GmbH Software, München, Germany) and R version 3.5.2 (R Core Team (2018). R: A language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, Austria. URL https://www.R-project.org/). All statistical tests were performed at a significance level of 0.05.
Results
Socio-demographic factors (Table 1)
Socio-economic status of the cohort was different from the current normal German population with a markedly higher percentage of members in the upper middle class and a lowered percentage in the subclass. In this connection, the method of the subjective stratification of the social class is considered largely determined by the factual socio-economic status or social situation.
With respect to educational level, percentages of qualified degrees were higher than those of the average German population. In addition, the percentage of high profession degrees exceeded those of the normal population. Nevertheless, the rate of unemployment was almost double as high.
Family status in terms of living in partnership was like the normal population, whereas the offspring rate was found reduced to about one third of the average German young adult male or female population (reference sources in Table 1, footnotes).
Non-cardiac comorbidity (Table 1)
About one third of the patients suffered from concomitant non-cardiac comorbidity, in which neurologic morbidities such as coordination disorders, spastic hemi- or tetraplegia and epilepsy (14.1%) as well as psychiatric morbidities (6.5%) including executive dysfunctions (e.g., goal-directed behavior, cognitive flexibility, planning) were the most prevalent disease groups, followed by respiratory allergies and hypothyroidism.
Non-cardiac medication was applied in a total of 15% in which psychiatric medication was prevalent in 5.4%. Moreover, 5.4% received psychotherapy. Overall, the incidence of neurologic comorbidity in our patient group exceeded the one expected for an age-appropriate average population, whereas the incidence of psychiatric comorbidity and therapy did not (reference sources in Table 1, footnotes).
Univariate associations between outcome parameters
Spearman correlation analyses were calculated between the outcome parameters of the 8 SF-36 dimensions and 3 possible influencing continuous variables concerning socio-demographic parameters. Correlations (Spearman 0.22–0.41, p < 0.05; bold letters) are shown in Table 2.
With respect to the physical domains of SF-36, physical functioning was significantly correlated with better socioeconomic status, educational level and profession degree.
With respect to the mental domains of SF-36, emotional role function was significantly correlated with the educational level.
Kruskal–Wallis tests were calculated comparing the results of the 8 SF-36 dimensions with 4 discrete variables of non-cardiac comorbidity (subgroups of patients with or without non-cardiac comorbidity in total, neurologic comorbidity, psychiatric comorbidity, psychotherapy, resp). P values are displayed in Table 3, as also visualized by box plots in Fig. 1a, b.
Multivariable analyses of influencing factors on outcome parameters
Seven outcome parameters of the SF-36 dimensions (except physical role function, due to reduced data variability) were modeled using generalized linear models. For each dimension score separate models were built using: (1) predictors of socio-demographic parameters (from Table 2), and (2) non-cardiac morbidity status parameters (from Table 3, except psychiatric morbidity and psychotherapy, due to reduced data variability). As a result, none of the 14 built generalized linear models was able to reveal any independent association between the SF-36 dimensions’ scores and the influencing factors due to weak evidence and high standard errors (data not shown).
Discussion
Adults with congenital heart disease, as a heterogeneous population with heart defects of simple, moderate or severe complexity, are at increased risk for physical, psychiatric, psychosocial and socioeconomic problems, potentially leading to a reduced quality of life, partly independent of the severity of their heart defect [10, 11, 19,20,21]. Contrary, young adult patients with transposition of the great arteries after neonatal arterial switch operation, represent a uniform subgroup with a congenital heart disease of moderate complexity, providing an overall good cardiologic condition. Within our prospective arterial switch reassessment program [12,13,14, 22,23,24], we had recently reported on an unselected cohort of TGA patients at mean age 23 (18–29) years: despite a normal to borderline objective exercise capacity and a good NYHA status, they had a persistent elevated risk for a reduction of their HRQOL [15]. Therefore, the aims of the present study were (1) to assess socio-demographic parameters and non-cardiac comorbidity compared to the normal population, and (2) to evaluate the relation of the latter factors to the self-perceived HRQOL dimensions in these patients.
Socio-demographic factors
In our patient group, socio-economic status as a potential risk factor for quality of life [11] was markedly elevated compared with the normal German population (Table 1). Educational level was even better providing a markedly higher rate of high school degrees in comparison to the normal population. In addition, we found an increased prevalence of employment with a high profession degree. However, unemployment was almost twice the rate, compared to the normal German population and even higher than in a cross-sectional survey from the National Registry for Congenital Heart Defects in Germany [25]. Living in partnership was in the normal range compared to the German population, but the offspring rate was found low for both genders, in which pregnancy has been basically well tolerated with good maternal outcomes after ASO for TGA [26].
Non-cardiac comorbidity
With respect to the non-cardiac comorbidity, chronic neurologic illness comprises about 50% of our patients with a general comorbidity and is markedly increased compared to the normal European population, whereas the incidence of reported psychiatric comorbidity is not found elevated compared to the normal German population (Table 1). However, summarized neurologic and psychiatric illness requiring treatment even includes two thirds of the total non-cardiac chronic comorbidity. Regarding our longitudinal comparison with data at mean age 17 years, the current incidence of neurologic morbidity has slightly increased due to acquired conditions such as epilepsy, migraine, tic dysfunction, brain tumor, but is still dominated by pre-existing motor coordination dysfunctions and spastic paralysis. Despite encouraging overall neurodevelopmental outcomes, a significant minority of adolescents had psycho-intellectual performances below the expected level in our former study [14]. Advanced findings with respect to reduced neuropsychological outcome and increased risk of psychiatric disorders have been published from the Boston Circulatory Arrest Study at age 16 years: impaired cognitive function and parental stress at younger age as well as executive dysfunction deficits were at risk to increase psychosocial and psychiatric morbidity in adolescents after ASO [27, 28]. Continuing these challenges into the young adult age, cognitive and psychologic difficulties as well as increased risk of psychiatric morbidity in terms of depression and anxiety have been confirmed in patients after neonatal ASO for TGA with a higher lifetime prevalence of depression compared to healthy controls (43 vs. 19%) and anxiety disorders (54 vs 33%) [4,5,6]. In contrast, in patients after the formerly performed atrial redirection surgery for TGA, the proven incidence of psychiatric disease has been reported with 20%, and in mixed cohorts of adults with congenital heart defects, the rate of psychiatric disorders reached about 30% [6, 19]. Finally, the influences of multiple patient-related and procedure-related risk factors, including results of structural and functional brain MRI investigations, on neurodevelopmental and psychosocial issues after cardiac surgery during infancy have become a matter of debate for many years now [29,30,31,32,33].
Analysis of influencing factors on HRQOL
Physical health dimensions
The self-perceived physical and psychosocial wellbeing had been assessed prior to the Corona pandemic using the SF-36, one of the most common and widely used standardized health-related non-disease-specific quality of life tests with German norm values from 2011.
From the spectrum of physical health dimensions, physical functioning was the dimension that most frequently received diverse influences as well from all assessed socio-demographic parameters as from summarized non-cardiac comorbidity and neurologic morbidity. The impact on the more overriding dimension of general health perception, was influenced by factors of summarized non-cardiac comorbidity, neurologic and psychiatric morbidity.
Our results about the impact on self-perceived physical wellbeing confirm significant associations of socio-demographic factors (socioeconomic status, educational level, employment status) with physical QoL, compared to previous studies in mixed ACHD patients [10, 20, 25]. In general, disease severity is reported to have an impact on the physical domains of QoL [25, 34].
Less data have been published about associations between physical health and non-cardiac morbidity in TGA patients. In contrast to the recent study conducted by Kalfa and Kasmi et al. [4,5,6], we also included patients with non-cardiac comorbidity, especially those with neurologic and neurocognitive disorders potentially disturbing quality of life. Nevertheless, in the aforementioned study, the authors reported lower satisfaction in the physical health domain. As expected, our data show a significant impact not only of neurologic, but also of psychiatric morbidity on physical health perception. It has been reported that, despite significant resilience to known neurologic, neuropsychologic and academic deficits, increased rates of ACHD patients, including those after ASO for TGA, present with reduced psychosocial functioning and increased risk of psychiatric morbidity, beginning in childhood and continuing into adolescence [27, 28]. In young adulthood, cognitive and psychologic difficulties increase the risk of poorer quality of life [4,5,6].
Mental health dimensions
Within the dimensions of mental health, social functioning received negative impact from non-cardiac comorbidity, neurologic and psychiatric morbidity. Vitality was also influenced by neurologic and psychiatric morbidity. The emotional role function was negatively influenced in patients needing psychotherapy; it was positively influenced by a better educational level. The negative impact on the overriding dimension of psychical health was focused on psychiatric morbidity and psychotherapy.
Our results about the impact factors on self-perceived mental health highlight the importance of neurologic, neurodevelopmental, and psychosocial morbidity, as outlined previously [11, 35]. In the pediatric population with CHD, high complexity heart defects with psychosocial morbidity factors as parental stress, posttraumatic stress disorder or anxiety symptoms have been found associated with reduced psychosocial wellbeing. Other studies evaluated factors as low self-perception, need for any medication, or lower cognitive function [6, 13]. In young adult patients with TGA after ASO, psychiatric disorders, possibly partly as result of pre-existing cognitive or psychologic difficulties, have been evaluated as risk factors for reduced psychosocial quality of life [4]. Especially a markedly elevated presence of mood and anxiety disorders significantly influences social interactions, employability, and achievement [5, 6] and hereby decreases self-perceived psychosocial wellbeing. Furthermore, female gender, less social support [20], or socio-demographic factors as increasing age, partnership, education level and unemployment [25] have been found negatively associated with mental health perception.
Synopsis and outlook
In our patient group, we have shown that:
-
(1)
Better physical health perception is significantly correlated with better socio-economic status, better educational level, but with lower employment status.
-
(2)
Better physical and mental health perceptions are significantly correlated with the absence of non-cardiac comorbidity, especially with absent neurological or psychiatric comorbidity.
-
(3)
Better physical and mental health perceptions are correlated with better objective exercise capacity and NYHA status [15].
-
(4)
Physical and mental health perceptions—as key parameters for quality-of-life evaluation—are plausible indicators for the aforementioned risk factors, also pointed out in studies on mixed ACHD groups [10, 25].
Being aware of the increased risks due to non-cardiac comorbidity in ACHD patients:
-
(1)
Physical and psychosocial interventions are deemed necessary, focused on training the patients’ comprehension of the disease and providing coping strategies leading to a better resilience [36, 37].
-
(2)
To date, limited observational intervention studies to improve the physical or psychosocial status of children and adults with CHD and their families have been successfully performed. The shift to systematic interventional research studies to improve QOL for children and adults with CHD has recently been designed, but efficient generalizable results are still lacking [38,39,40].
-
(3)
Physical and psychosocial interventions can be mandatory for individual patients’ benefit as well as for the general benefit of society, even in this population with a generally good cardiologic health [11, 20, 41,42,43]. Serial quality of life evaluations can be a useful measure to monitor the benefit of such interventions [6, 36, 37].
Conclusion
Based on the fact that despite good results on average, an increased proportion of young adults with TGA after ASO is at elevated risk for QOL difficulties and impairments, especially with respect to physical, social and emotional functioning [15], potential non-cardiac risk factors have been assessed. In this study, different socio-demographic parameters as socio-economic status, educational level and employment status, and non-cardiac, especially neurologic and psychiatric comorbidities have been found as significant risk factors for physical as well as for mental health perception. Clinical applications of health-related quality of life measurement are feasible and meaningful and should be part of routine screening programs even in ACHD patients with a good cardiologic condition to detect so far subclinical physical, neurodevelopmental and psychosocial comorbidity.
Abbreviations
- ACHD:
-
Adults with congenital heart disease
- ASO:
-
Arterial switch operation
- CHD:
-
Congenital heart disease
- TGA:
-
Transposition of the great arteries
- HRQOL:
-
Health-related quality of life
- NYHA:
-
New York heart association
- QOL:
-
Quality of life
References
Villafañe J, Lantin-Hermoso MR, Bhatt AB, Tweddell JS, Geva T, Nathan M, Elliott MJ, Vetter VL, Paridon SM, Kochilas L, Jenkins KJ, Beekman RH 3rd, Wernovsky G, Towbin JA, American College of Cardiology’s Adult Congenital and Pediatric Cardiology Council (2014) D-transposition of the great arteries: the current era of the arterial switch operation. J Am Coll Cardiol 64(5):498–511
Tobler D, Williams WG, Jegatheeswaran A, Van Arsdell GS, McCrindle BW, Greutmann M, Erwin N, Oechslin EN, Silversides CK (2010) Cardiac outcomes in young adult survivors of the arterial switch operation for transposition of the great arteries. J Am Coll Cardiol 56(1):58–64
Ruys TP, van der Bosch AE, Cuypers JA, Witsenburg M, Helbing WA, Bogers AJ, van Domburg R, McGhie JS, Geleijnse ML, Henrichs J, UtensE V, der Zwaan HB, Takkenberg JJM, Roos-Hesselink JW (2013) Long-term outcome and quality of life after arterial switch operation: a prospective study with a historical comparison. Congenit Heart Dis 8(3):203–210
Kalfa D, Kasmi L, Geronikola N, Calderon J, Lambert V, Belli E, Bonnet D, Montreuil M (2017) Cognitive outcomes and health-related quality of life in adults two decades after the arterial switch operation for transposition of the great arteries. J Thorac Cardiovasc Surg 154(3):1028–1035
Kasmi L, Calderon J, Montreuil M, Geronikola N, Lambert V, Belli E, Bonnet D, Kalfa D (2018) Neurocognitive and psychological outcomes in adults with dextro-transposition of the great arteries corrected by the arterial switch operation. Ann Thorac Surg 105(3):830–836
Kasmi L, Bonnet D, Montreuil M, Kalfa D, Geronikola N, Bellinger DC, Calderon J (2017) Neuropsychological and psychiatric outcomes in dextro-transposition of the great arteries across the lifespan: a state-of-the-art review. Front Pediatr 5:59
Moons P, Van Deyk K, De Geest S, Gewillig M, Budts W (2005) Is the severity of congenital heart disease associated with the quality of life and perceived health of adult patients? Heart 91(9):1193–1198
Moons P, Van Deyk K, Marquet K, Raes E, De Bleser L, Budts W, De Geest S (2005) Individual quality of life in adults with congenital heart disease: a paradigm shift. Eur Heart J 26(3):298–307
Moons P (2011) Better than expected?! Why persons with congenital heart disease can have a better quality of life than healthy people. Heart vzw, Leuven, pp 67–78
Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Wang JK, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Mattsson E, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Romfh AW, White K, Callus E, Kutty S, Fieuws S, Moons P, APPROACH-IS consortium and ISACHD (2016) Quality of life of adults with congenital heart disease in 15 Countries: evaluating country-specific characteristics. J Am Coll Cardiol 67(19):2237–2245
Marino BS, Cassedy A, Drotar D, Wray J (2016) The impact of neurodevelopmental and psychosocial outcomes on health-related quality of life in survivors of congenital heart disease. J Pediatr 174:11-22.e2
Hövels-Gürich HH, Seghaye MC, Däbritz S, Messmer BJ, von Bernuth G (1997) Cognitive and motor development in preschool and school-aged children after neonatal arterial switch operation. J Thorac Cardiovasc Surg 114:578–585
Hövels-Gürich HH, Seghaye MC, Däbritz S, Messmer BJ, von Bernuth G (1997) Cardiological and general health status in preschool-and school-age children after neonatal arterial switch operation. Eur J Cardiothorac Surg 12:593–601
Heinrichs AK, Holschen A, Krings T, Messmer BJ, Schnitker R, Minkenberg R, Hövels-Gürich HH (2014) Neurologic and psycho-intellectual outcome related to structural brain imaging in adolescents and young adults after neonatal arterial switch operation for transposition of the great arteries. J Thorac Cardiovasc Surg 148(5):2190–2199
Hövels-Gürich HH, Lebherz C, Korte B, Vazquez-Jimenez JF, Marx N, Kerst G, Frick M (2022) NYHA class and cardiopulmonary exercise capacity impact self-perceived health-related quality of life in young adults after arterial switch operation for transposition of the great arteries. Int J Cardiol Congenital Heart Disease 7:100330. https://doi.org/10.1016/j.ijcchd.2022.100330
Kleining G, Moore H (1968) Soziale Selbsteinstufung (SSE): ein Instrument zur Messung sozialer Schichten. Kölner Zeitschrift für Soziologie und Sozialpsychologie 20(3):502–552
Bünning M. (2018) Soziale Lagen und soziale Schichtung, p 260–261. In: Sozialstruktur und soziale Lagen; Auszug aus dem Datenreport 2018. Wissenschaftszentrum Berlin für Sozialforschung GmbH, Berlin, Germany. https://www.destatis.de/DE/Service/Statistik-Campus/Datenreport/Downloads/datenreport-2018-kap-7.pdf?_blob=publicationFile; Accessed 9 Feb 2022
Morfeld M, Kirchberger I, Bullinger M (2011) SF 36: Deutsche Version des Short form-36 health survey: Manual, 2nd edn. Hogrefe, Göttingen
Kovacs AH, Utens EM (2015) More than just the heart: transition and psychosocial issues in adult congenital heart disease. Cardiol Clin 33(4):625–634
Rometsch S, Greutmann M, Latal B, Bernaschina I, Knirsch W, Schaefer C, Oxenius A, Landolt MA (2019) Predictors of quality of life in young adults with congenital heart disease. Eur Heart J Qual Care Clin Outcomes 5(2):161–168
Lebherz C, Frick M, Panse J, Wienstroer P, Brehmer K, Kerst G, Marx N, Mathiak K, Hövels-Gürich H (2022) Anxiety and depression in adults with congenital heart diaease. Front Pediatr 10:906385
Hövels-Gürich HH, Konrad K, Wiesner M, Minkenberg R, Herpertz-Dahlmann B, Messmer BJ, Von Bernuth G (2002) ong term behavioural outcome after neonatal arterial switch operation for transposition of the great arteries. Arch Dis Child 87:506–510
Hövels-Gürich HH, Seghaye MC, Ma Q, Miskova M, Minkenberg R, Messmer BJ, von Bernuth G (2003) Long-term results of cardiac and general health status in children after neonatal arterial switch operation. Ann Thorac Surg 75:935–943
Hövels-Gürich HH, Seghaye MC, Schnitker R, Wiesner M, Huber W, Minkenberg R, Kotlarek F, Messmer BJ, Von Bernuth G (2002) Long-term neurodevelopmental outcomes in school-aged children after neonatal arterial switch operation. J Thorac Cardiovasc Surg 124:448–458
Vigl M, Niggemeyer E, Hager A, Schwedler G, Kropf S, Bauer U (2010) The importance of socio-demographic factors for the quality of life of adults with congenital heart disease. Qual Life Res 20(2):169–177
Stoll VM, Drury NE, Thorne S, Selman T, Clift P, Chong H, Thompson PJ, Morris RK, Hudsmith LE (2018) Pregnancy outcomes in women with transposition of the great arteries after an arterial switch operation. JAMA Cardiol 3(11):1119–1122
Bellinger DC, Wypij D, Rivkin MJ, de Maso DR, Robertson RL Jr, Dunbar-Masterson C, Rappaport LA, Wernovsky G, Jonas RA, Newburger JW (2011) Adolescents with d-transposition of the great arteries corrected with arterial switch procedure: neuropsychological assessment and structural brain imaging. Circulation 124:1361–1369
DeMaso DR, Labella M, Taylor GA, Forbes PW, Stopp C, Bellinger DC, Rivkin MJ, Wypij D, Newburger JW (2014) Psychiatric disorders and function in adolescents with d-transposition of the great arteries. J Pediatr 165(4):760–766
Miller SP, McQuillen PS, Vigneron DB, Glidden DV, Barkovich AJ, Ferriero DM, Hamrick SE, Azakie A, Karl TR (2004) Preoperative brain injury in newborns with transposition of the great arteries. Ann Thorac Surg 77:1698–1706
Rivkin MJ, Watson CG, Scoppettuolo LA, Wypij D, Vajapeyam S, Bellinger DC, DeMaso DR, Robertson RL Jr, Newburger JW (2013) Adolescents with D-transposition of the great arteries repaired in early infancy demonstrate reduced white matter microstructure associated with clinical risk factors. J Thorac Cardiovasc Surg 146(3):543-549.e1
Watson CG, Asaro LA, Wypij D, Robertson RL Jr, Newburger JW, Rivkin MJ (2016) Altered gray matter in adolescents with d-transposition of the great arteries. J Pediatr 169:36-43.e1
Hövels-Gürich HH (2016) Factors influencing neurodevelopment after cardiac surgery during infancy. Front Pediatr 4:137
Ehrler M, Latal B, Kretschmar O, von Rhein M, O’Gorman Tuura R (2020) Altered frontal white matter microstructure is associated with working memory impairments in adolescents with congenital heart disease: a diffusion tensor imaging study. Neuroimage Clin 25:102123
Fteropoulli T, Stygall J, Cullen S, Deanfield J, Newman SP (2013) Quality of life of adult congenital heart disease patients: a systematic review of the literature. Cardiol Young 23(4):473–485
Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes M, Gaynor JW, Mussatto KA, Uzark K, Goldberg CS, Johnson WH Jr, Li J, Smith SE, Bellinger DC, Mahle WT, American Heart Association Congenital Heart Defects Committee, Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council (2012) Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 126(9):1143–1172
McCusker CG, Doherty NN, Molloy B, Rooney N, Mulholland C, Sands A, Craig B, Stewart M, Casey F (2012) A randomized controlled trial of interventions to promote adjustment in children with congenital heart disease entering school and their families. J Pediatr Psychol 37(10):1089–1103
Utens EMWJ, Callus E, Levert EM, Groote K, Casey F (2018) Multidisciplinary family-centred psychosocial care for patients with CHD: consensus recommendations from the AEPC Psychosocial Working Group. Cardiol Young 28(2):192–198
Kovacs AH, Bandyopadhyay M, Grace SL, Kentner AC, Nolan RP, Silversides CK, Irvine MJ (2015) Adult congenital heart disease-coping and REsilience (ACHD-CARE): Rationale and methodology of a pilot randomized controlled trial. Contemp Clin Trials 45(Pt B):385–393
Duppen N, Takken T, Hopman MTE, ten Harkel ADJ, Dulfer K, Utens EMW, Helbing, (2013) WA Systematic review of the effects of physical exercise training programmes in children and young adults with congenital heart disease. Int J Cardiol 168(3):1779–1787
Cassidy AR, Butler SC, Briend J, Calderon J, Casey F, Crosby LE, Fogel J, Gauthier N, Raimondi C, Marino BS, Sood E, Butcher JL (2021) Neurodevelopmental and psychosocial interventions for individuals with congenital heart disease: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative. Cardiol Young 31(6):888–899
Latal B (2016) Neurodevelopmental outcomes of the child with congenital heart disease. Clin Perinatol 43(1):173–185
Hövels-Gürich H (2019) Psychomotorische und kognitive Entwicklung und Lebensqualität bei Kindern und Jugendlichen mit angeborenem Herzfehler [Psychomotor and Cognitive Development and Quality of Life in Children and Adolescents with Congenital Heart Defect]. Klin Padiatr 231(4):183–190
Uzark K (2016) Challenges assessing quality of life in congenital heart disease globally. J Am Coll Cardiol 67(19):2246–2248
Acknowledgements
We thank András Keszei, MD, PhD, Center for Translational Clinical Research, Medical Faculty, RWTH Aachen University, Aachen, Germany for statistical assistance.
Funding
Open Access funding enabled and organized by Projekt DEAL. The work was supported by “Kinderherzen-Fördergemeinschaft Deutsche Kinderherzzentren e.V.”, Elsa-Brändström-Str. 2, D-53225 Bonn, Germany. The authors H.H. and M.F. have received financial support of the research. The funding company was not involved in collection, analysis, interpretation of data, in writing the report or decision to submit the article for publication.
Author information
Authors and Affiliations
Contributions
HHH-G: conceptualization, methodology, validation, formal analysis, investigation, resources, writing–original draft, writing–review and editing, visualization, supervision, project administration, funding acquisition, final approval of the version to be submitted. CL: formal analysis, writing–review and editing, visualization, final approval of the version to be submitted. BK: formal analysis, writing–review and editing, final approval of the version to be submitted. JFV-J: conceptualization, review and editing, final approval of the version to be submitted. NM: conceptualization, review and editing, visualization, supervision, final approval of the version to be submitted. GK: conceptualization, review and editing, visualization, supervision, final approval of the version to be submitted. MF: conceptualization, methodology, validation, formal analysis, investigation, resources, writing–original draft, writing–review and editing, visualization, supervision, project administration, funding acquisition, final approval of the version to be submitted.
Corresponding author
Ethics declarations
Conflict of interest
The authors have no known financial or non-financial interests to disclose.
Ethical approval
This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of the local Ethical Medical Committee (Medical Faculty RWTH Aachen University, Nr. EK 243/14).
Consent to participate
Written informed consent was obtained from each patient included in the study.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
About this article
Cite this article
Hövels-Gürich, H.H., Lebherz, C., Korte, B. et al. Socio-demographic parameters and non-cardiac comorbidity related to self-perceived quality of life in young adults after neonatal arterial switch operation for transposition of the great arteries. Heart Vessels 38, 570–580 (2023). https://doi.org/10.1007/s00380-022-02188-8
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00380-022-02188-8