Torowicz, D, Irving, SY, Hanlon, AL, Fullbright Sumpter, D, Medoff-Cooper, B. Infant temperament and parent stress in 3 month old infants following surgery for complex congenital heart disease. J Dev Behav Pediatr 2010; 31: 202–208.
Solberg, O, Dale, MT, Holmstrom, H, Eskedal, LT, Landolt, MA, Vollrath, ME. Emotional reactivity in infants with congenital heart defects and maternal symptoms of postnatal depression. Arch Womens Ment Health 2011; 14: 487–492.
Brosig, CL, Mussatto, KA, Kuhn, EM, Tweddell, JS. Psychosocial outcomes for preschool children and families after surgery for complex congenital heart disease. Pediatr Cardiol 2007; 28: 255–262.
Bellinger, DC, Newburger, JW, Wypij, D, Kuban, KC, duPlesssis, AJ, Rappaport, LA. Behaviour at eight years in children with surgically corrected transposition: the Boston circulatory arrest trial. Cardiol Young 2009; 19: 86–97.
Martinez-Biarge, M, Jowett, VC, Cowan, FM, Wusthoff, CJ. Neurodevelopmental outcome in children with congenital heart disease. Semin Fetal Neonatal Med 2013; 18: 279–285.
Puosi, R, Korkman, M, Sarajuuri, A, et al. Neurocognitive development and behavioral outcome of 2-year-old children with univentricular heart. J Int Neuropsychol Soc 2011; 17: 1094–1103.
Hovels-Gurich, HH, Konrad, K, Skorzenski, D, et al. Long-term behavior and quality of life after corrective cardiac surgery in infancy for tetralogy of Fallot or ventricular septal defect. Pediatr Cardiol 2007; 28: 346–354.
Karsdorp, PA, Everaerd, W, Kindt, M, Mulder, BJ. Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis. J Pediatr Psychol 2007; 32: 527–541.
McCusker, CG, Armstrong, MP, Mullen, M, Doherty, NN, Casey, FA. A sibling-controlled, prospective study of outcomes at home and school in children with severe congenital heart disease. Cardiol Young 2013; 23: 507–516.
Calderon, J, Bonnet, D, Pinabiaux, C, Jambaque, I, Angeard, N. Use of early remedial services in children with transposition of the great arteries. J Pediatr 2013; 163: 1105–1110.
Riehle-Colarusso, T, Autry, A, Razzaghi, H, et al. Congenital heart defects and receipt of special education services. Pediatrics 2015; 136: 496–504.
Gerstle, M, Beebe, DW, Drotar, D, Cassedy, A, Marino, BS. Executive functioning and school performance among pediatric survivors of complex congenital heart disease. J Pediatr 2016; 173: 154–159.
Shillingford, AJ, Glanzman, MM, Ittenbach, RF, Clancy, RR, Gaynor, JW, Wernovsky, G. Inattention, hyperactivity, and school performance in a population of school-age children with complex congenital heart disease. Pediatrics 2008; 121: 759–767.
Farr, SL, Downing, KF, Riehle-Colarusso, T, Abarbanell, G. Functional limitations and educational needs among children and adolescents with heart disease. Congenit Heart Dis 2018; 13: 633–639.
Bellinger, DC, Wypij, D, duPlessis, AJ, et al. Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory Arrest Trial. J Thorac Cardiovasc Surg 2003; 126: 1385–1396.
Cassidy, AR, Ilardi, D, Bowen, SR, et al. Congenital heart disease: a primer for the pediatric neuropsychologist. Child Neuropsychol 2017: 1–44.
Spijkerboer, AW, Utens, EM, Bogers, AJ, Helbing, WA, Verhulst, FC. A historical comparison of long-term behavioral and emotional outcomes in children and adolescents after invasive treatment for congenital heart disease. J Pediatr Surg 2008; 43: 534–539.
Ringle, ML, Wernovsky, G. Functional, quality of life, and neurodevelopmental outcomes after congenital cardiac surgery. Semin Perinatol 2016; 40: 556–570.
Bellinger, DC, Newburger, JW. Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease. Progr Pediatr Cardiol 2010; 29: 87–92.
Schaefer, C, von Rhein, M, Knirsch, W, et al. Neurodevelopmental outcome, psychological adjustment, and quality of life in adolescents with congenital heart disease. Dev Med Child Neurol 2013; 55: 1143–1149.
Kovacs, AH, Moons, P. Psychosocial functioning and quality of life in adults with congenital heart disease and heart failure. Heart Fail Clin 2014; 10: 35–42.
Holbein, CE, Fogleman, ND, Hommel, K, et al. A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation. Congenit Heart Dis 2018; 13: 392–400.
McCrindle, BW, Williams, RV, Mital, S, et al. Physical activity levels in children and adolescents are reduced after the Fontan procedure, independent of exercise capacity, and are associated with lower perceived general health. Arch Dis Child 2007; 92: 509–514.
Massin, MM, Hovels-Gurich, HH, Gerard, P, Seghaye, MC. Physical activity patterns of children after neonatal arterial switch operation. Ann Thorac Surg 2006; 81: 665–670.
Dulfer, K, Helbing, WA, Duppen, N, Utens, EM. Associations between exercise capacity, physical activity, and psychosocial functioning in children with congenital heart disease: a systematic review. Eur J Prev Cardiol 2014; 21: 1200–1215.
Duppen, N, Takken, T, Hopman, MT, et al. Systematic review of the effects of physical exercise training programmes in children and young adults with congenital heart disease. Int J Cardiol 2013; 168: 1779–1787.
Voss, C, Duncombe, SL, Dean, PH, de Souza, AM, Harris, KC. Physical activity and sedentary behavior in children with congenital heart disease. J Am Heart Assoc 2017; 6: e004665.
Casey, FA, Stewart, M, McCusker, CG, et al. Examination of the physical and psychosocial determinants of health behaviour in 4-5-year-old children with congenital cardiac disease. Cardiol Young 2010; 20: 532–537.
McCusker, CG, Doherty, NN, Molloy, B, et al. Determinants of neuropsychological and behavioural outcomes in early childhood survivors of congenital heart disease. Arch Dis Child 2007; 92: 137–141.
Woolf-King, SE, Anger, A, Arnold, EA, Weiss, SJ, Teitel, D. Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc 2017; 6: e004862.
Kolaitis, GA, Meentken, MG, Utens, E. Mental health problems in parents of children with congenital heart disease. Front Pediatr 2017; 5: 102.
McClung, N, Glidewell, J, Farr, SL. Financial burdens and mental health needs in families of children with congenital heart disease. Congenit Heart Dis 2018; 13: 554–562.
Lesch, W, Specht, K, Lux, A, Frey, M, Utens, E, Bauer, U. Disease-specific knowledge and information preferences of young patients with congenital heart disease. Cardiol Young 2014; 24: 321–330.
Levert, EM, Helbing, WA, Dulfer, K, van Domburg, RT, Utens, EM. Psychosocial needs of children undergoing an invasive procedure for a CHD and their parents. Cardiol Young 2017; 27: 243–254.
Tesson, S, Butow, PN, Sholler, GF, Sharpe, L, Kovacs, AH, Kasparian, NA. Psychological interventions for people affected by childhood-onset heart disease: a systematic review. Health Psychol 2019; 38: 151–161.
McCusker, CG, Doherty, NN, Molloy, B, et al. A randomized controlled trial of interventions to promote adjustment in children with congenital heart disease entering school and their families. J Pediatr Psychol 2012; 37: 1089–1103.
Thompson, RJ Jr., Gustafson, KE, Hamlett, KW, Spock, A. Stress, coping, and family functioning in the psychological adjustment of mothers of children and adolescents with cystic fibrosis. J Pediatr Psychol 1992; 17: 573–585.
van der Mheen, M, van Beynum, IM, Dulfer, K, et al. The CHIP-Family study to improve the psychosocial wellbeing of young children with congenital heart disease and their families: design of a randomized controlled trial. BMC Pediatr 2018; 18: 230.
Saigal, S and Doyle, LW. An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet 2008; 371: 261–269.
Hoffman, JI, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 1890–1900.
Utens, E, Dulfer, K, Legerstee, J, Van Beynum, I, Meentken, M, Van der Mheen, M. Dutch translation of: Beyond the Diagnosis: Family Adaptation to Congenital Heart Disease. Erasmus MC – Sophia Children’s Hospital, Rotterdam, 2016.
Utens, EMWJ. FIJN: VRIENDEN! Handleiding voor ouders om emotionele veerkracht door middel van spel op te bouwen bij 4 tot en met 7 jarigen. Erasmus MC – Sophia Kinderziekenhuis, Rotterdam, 2011.
Barrett, PM. Fun FRIENDS: The Teaching and Training Manual for Group Leaders. Fun FRIENDS Publishing, Brisbane, 2007.
Dulfer, K, Duppen, N, Kuipers, IM, et al. Aerobic exercise influences quality of life of children and youngsters with congenital heart disease: a randomized controlled trial. J Adolesc Health 2014; 55: 65–72.
Utens, E, Dulfer, K. Rotterdams Kwaliteit van Leven Interview. 2010.
Achenbach, TM, Rescorla, LA. Manual for the ASEBA School-Age Forms & Profiles. University of Vermont, Research Center for Children, Youth, & Families, Burlington, Vermont, 2001.
Verhulst, FC, van der Ende, J. Handleiding ASEBA Vragenlijsten voor leeftijden 6 tot en met 18 jaar. ASEBA, Rotterdam, The Netherlands, 2013.
Smidts, DP, Huizinga, M. BRIEF Executieve Functies Gedragsvragenlijst: Handleiding. Hogrefe Uitgevers, Amsterdam, 2009.
Van der Heijden, KB, Suurland, J, De Sonneville, LMJ, Swaab, HJT. BRIEF-P Vragenlijst executieve functies voor 2- tot 5-jarigen. Hogrefe uitgevers, Amsterdam, 2013.
Langraf, JM, Abetz, L, Ware, JE. The CHQ User’s Manual. Health Act, Boston, 1999.
Stevens, M, Moget, P, de Greef, MH, Lemmink, KA, Rispens, P. The Groningen Enjoyment Questionnaire: a measure of enjoyment in leisure-time physical activity. Percept Mot Skills 2000; 90: 601–604.
Dulfer, K, Duppen, N, Blom, NA, et al. Effect of exercise training on sports enjoyment and leisure-time spending in adolescents with complex congenital heart disease: the moderating effect of health behavior and disease knowledge. Congenit Heart Dis 2014; 9: 415–423.
Arrindell, WA, Ettema, JHM. SCL-90. Symptom Checklist. Handleiding bij een multidimensionele psychopathologie-indicator. Swets Test Publishers, Lisse, 2003.
Meyer, TJ, Miller, ML, Metzger, RL, Borkovec, TD. Development and validation of the Penn State Worry Questionnaire. Behav Res Ther 1990; 28: 487–495.
Van der Heiden, C, Muris, P, Bos, AE, Van der Molen, HT. Factor structure of the Dutch version of the Penn State Worry Questionnaire. J Behav Ther Exp Psych 2010; 41: 304–309.
De Brock, AJLL, Vermulst, AA, Gerris, JRM, Abidin, RR. NOSI: Nijmeegse Ouderlijke Stress Index, handleiding experimentele versie. Swets & Zeitlinger, Lisse, 1992.
Haverman, L, van Oers, HA, Limperg, PF, et al. Development and validation of the distress thermometer for parents of a chronically ill child. J Pediatr 2013; 163: 1140–1146 e1142.
Aaronson, NK, Muller, M, Cohen, PD, et al. Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations. J Clin Epidemiol 1998; 51: 1055–1068.
Epstein, NB, Baldwin, LM, Bishop, DS. The McMaster family assessment device. J Marital Fam Ther 1983; 9: 171–180.
Utens, EMWJ, Dulfer, K. Rotterdam Knowledge Questionnaire. Erasmus MC - Sophia Children’s Hospital, Rotterdam, 2010.
Zeger, SL, Liang, KY, Albert, PS. Models for longitudinal data: a generalized estimating equation approach. Biometrics 1988; 44: 1049–1060.
Twisk, JW. Longitudinal data analysis. A comparison between generalized estimating equations and random coefficient analysis. Eur J Epidemiol 2004; 19: 769–776.
Corp, I. IBM SPSS Statistics for Windows. IBM Corp, Armonk, NY, 2016.
Hughes, B. Psychology in Crisis. Macmillan International Higher Education, London, 2018.
Stehl, ML, Kazak, AE, Alderfer, MA, et al. Conducting a randomized clinical trial of an psychological intervention for parents/caregivers of children with cancer shortly after diagnosis. J Pediatr Psychol 2009; 34: 803–816.
Law, EF, Fisher, E, Fales, J, Noel, M, Eccleston, C. Systematic review and meta-analysis of parent and family-based interventions for children and adolescents with chronic medical conditions. J Pediatr Psychol 2014; 39: 866–886.
Drotar, D. Psychological Interventions in Childhood Chronic Illness. American Psychological Association, Washington DC, 2006.
Wilding, S, Conner, M, Sandberg, T, et al. The question-behaviour effect: a theoretical and methodological review and meta-analysis. Eur Rev Soc Psychol 2016; 27: 196–230.
Phares, V, Lopez, E, Fields, S, Kamboukos, D, Duhig, AM. Are fathers involved in pediatric psychology research and treatment? J Pediatr Psychol 2005; 30: 631–643.
Parent, J, Forehand, R, Pomerantz, H, Peisch, V, Seehuus, M. Father participation in child psychopathology research. J Abnorm Child Psychol 2017; 45: 1259–1270.
Kirsh, SR, Aron, DC, Johnson, KD, et al. A realist review of shared medical appointments: how, for whom, and under what circumstances do they work? BMC Health Serv Res 2017; 17: 113.