ResourcesLast updated 7/10/20
This is not an exhaustive list. We would love to hear from you if there are additional resources to add. Please email [email protected] to post additional resources. |
Select reviews and meta-analyses
Adult congenital heart disease
- Fteropoulli, T., Stygall, J., Cullen, S., Deanfield, J., & Newman, S. P. (2013). Quality of life of adult congenital heart disease patients: a systematic review of the literature. Cardiology in the young, 23(4), 473–485. https://doi.org/10.1017/S1047951112002351
- Kahr, P. C., Radke, R. M., Orwat, S., Baumgartner, H., & Diller, G. P. (2015). Analysis of associations between congenital heart defect complexity and health-related quality of life using a meta-analytic strategy. International journal of cardiology, 199, 197–203. https://doi.org/10.1016/j.ijcard.2015.07.045
Arrhythmia
- Longmuir, P. E., Sampson, M., Ham, J., Weekes, M., Patel, B. J., & Gow, R. M. (2018). The mental health of adolescents and pre-adolescents living with inherited arrhythmia syndromes: a systematic review of the literature. Cardiology in the Young, 28(5), 621. https://doi.org/10.1017/S104795111700289X
Cardiac rehabilitation
- Meyer, M., Brudy, L., García-Cuenllas, L., Hager, A., Ewert, P., Oberhoffer, R., & Müller, J. (2020). Current state of home-based exercise interventions in patients with congenital heart disease: a systematic review. Heart, 106(5), 333-341. https://doi.org/10.1136/heartjnl-2019-315680
- Tikkanen, A. U., Oyaga, A. R., Riano, O. A., Alvaro, E. M., & Rhodes, J. (2012). Paediatric cardiac rehabilitation in congenital heart disease: a systematic review. Cardiology in the Young, 22(3), 241. https://doi.org/10.1017/S1047951111002010
Complex congenital heart disease
- Snookes, S. H., Gunn, J. K., Eldridge, B. J., Donath, S. M., Hunt, R. W., Galea, M. P., & Shekerdemian, L. (2010). A systematic review of motor and cognitive outcomes after early surgery for congenital heart disease. Pediatrics, 125(4), e818–e827. https://doi.org/10.1542/peds.2009-1959
- Huisenga, D., Gemert, S. L. B.-V., Bergen, A. V., Sweeney, J., & Hadders-Algra, M. (2020). Developmental outcomes after early surgery for complex congenital heart disease: a systematic review and meta-analysis. Developmental Medicine and Child Neurology. https://doi.org/10.1111/dmcn.14512
- Lisanti, A. J., Vittner, D., Medoff-Cooper, B., Fogel, J., Wernovsky, G., & Butler, S. (2019). Individualized Family Centered Developmental Care: An Essential Model to Address the Unique Needs of Infants with Congenital Heart Disease. The Journal of cardiovascular nursing, 34(1), 85. https://dx.doi.org/10.1097%2FJCN.0000000000000546
Family impact
- Jackson, A. C., Frydenberg, E., Liang, R. P. T., Higgins, R. O., & Murphy, B. M. (2015). Familial impact and coping with child heart disease: a systematic review. Pediatric Cardiology, 36(4), 695-712. https://doi.org/10.1007/s00246-015-1121-9
Guidelines/Recommendations/Statements
- Kasparian, N. A., Kan, J. M., Sood, E., Wray, J., Pincus, H. A., & Newburger, J. W. (2019). Mental health care for parents of babies with congenital heart disease during intensive care unit admission: Systematic review and statement of best practice. Early human development, 139, 104837. https://doi.org/10.1016/j.earlhumdev.2019.104837
- Zentner, D., Celermajer, D. S., Gentles, T., d’Udekem, Y., Ayer, J., Blue, G. M., … Wood, A. (2019). Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement. Heart, Lung & Circulation, 29(1), 5–39. https://doi.org/10.1016/j.hlc.2019.09.010
- Rychik, J., Atz, A. M., Celermajer, D. S., Deal, B. J., Gatzoulis, M. A., Gewillig, M. H., ... & Newburger, J. W. (2019). Evaluation and management of the child and adult with Fontan circulation: a scientific statement from the American Heart Association. Circulation, 140(6), e234-e284. https://doi.org/10.1161/CIR.0000000000000696
- Longmuir, P. E., Brothers, J. A., De Ferranti, S. D., Hayman, L. L., Van Hare, G. F., Matherne, G. P., ... & McCrindle, B. W. (2013). Promotion of physical activity for children and adults with congenital heart disease: a scientific statement from the American Heart Association. Circulation, 127(21), 2147-2159. https://doi.org/10.1161/CIR.0b013e318293688f
- Marino, B. S., Lipkin, P. H., Newburger, J. W., Peacock, G., Gerdes, M., Gaynor, J. W., ... & Li, J. (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. https://doi.org/10.1161/CIR.0b013e318265ee8a
- Priori, S. G., Wilde, A. A., Horie, M., Cho, Y., Behr, E. R., Berul, C., ... & Kannankeril, P. (2013). HRS/EHRA/APHRS expert consensus statement on the diagnosis and management of patients with inherited primary arrhythmia syndromes: document endorsed by HRS, EHRA, and APHRS in May 2013 and by ACCF, AHA, PACES, and AEPC in June 2013. Heart rhythm, 10(12), 1932 1963. https://doi.org/10.1016/j.hrthm.2013.05.014
- Utens, E., Callus, E., Levert, E., Groote, K., & Casey, F. (2018). Multidisciplinary family-centred psychosocial care for patients with CHD: Consensus recommendations from the AEPC Psychosocial Working Group. Cardiology in the Young, 28(2), 192-198. https://doi.org/10.1017/S104795111700137
ICD
- Magyar-Russell, G., Thombs, B. D., Cai, J. X., Baveja, T., Kuhl, E. A., Singh, P. P., ... & Marine, J. E. (2011). The prevalence of anxiety and depression in adults with implantable cardioverter defibrillators: a systematic review. Journal of psychosomatic research, 71(4), 223-231. https://doi.org/10.1016/j.jpsychores.2011.02.014
- Dunbar, S. B., Dougherty, C. M., Sears, S. F., Carroll, D. L., Goldstein, N. E., Mark, D. B., ... & Zeigler, V. L. (2012). Educational and psychological interventions to improve outcomes for recipients of implantable cardioverter defibrillators and their families: a scientific statement from the American Heart Association. Circulation, 126(17), 2146-2172. https://doi.org/10.1161/CIR.0b013e31825d59fd
- Pyngottu, A., Werner, H., Lehmann, P., & Balmer, C. (2019). Health-related quality of life and psychological adjustment of children and adolescents with pacemakers and Implantable Cardioverter Defibrillators: a systematic review. Pediatric Cardiology, 40(1), 1-16. https://doi.org/10.1007/s00246-018-2038-x
- Freedenberg, V., Thomas, S. A., & Friedmann, E. (2011). Anxiety and depression in implanted cardioverter-defibrillator recipients and heart failure: a review. Heart failure clinics, 7(1), 59-68. https://doi.org/10.1016/j.hfc.2010.08.008
Neurodevelopmental outcomes
- Verrall, C. E., Blue, G. M., Loughran-Fowlds, A., Kasparian, N., Gecz, J., Walker, K., Dunwoodie, S. L., Cordina, R., Sholler, G., Badawi, N., & Winlaw, D. (2019). 'Big issues' in neurodevelopment for children and adults with congenital heart disease. Open heart, 6(2), e000998. https://doi.org/10.1136/openhrt-2018-000998
- Huisenga, D., La Bastide‐Van Gemert, S., Van Bergen, A., Sweeney, J., & Hadders‐Algra, M. (2020). Developmental outcomes after early surgery for complex congenital heart disease: a systematic review and meta‐analysis. Developmental Medicine & Child Neurology. https://doi.org/10.1111/dmcn.14512
- Khalil, A., Suff, N., Thilaganathan, B., Hurrell, A., Cooper, D., & Carvalho, J. S. (2014). Brain abnormalities and neurodevelopmental delay in congenital heart disease: systematic review and meta-analysis. Ultrasound in obstetrics & gynecology : the official journal of the International Society of Ultrasound in Obstetrics and Gynecology, 43(1), 14–24. https://doi.org/10.1002/uog.12526
- Wilson, W. M., Smith-Parrish, M., Marino, B. S., & Kovacs, A. H. (2015). Neurodevelopmental and psychosocial outcomes across the congenital heart disease lifespan. Progress in Pediatric Cardiology, 39(2), 113-118. https://doi.org/10.1016/j.ppedcard.2015.10.011
Parent mental health
- Woolf‐King, S. E., Anger, A., Arnold, E. A., Weiss, S. J., & Teitel, D. (2017). Mental Health Among Parents of Children With Critical Congenital Heart Defects: A Systematic Review. Journal of the American Heart Association, 6(2). https://doi.org/10.1161/jaha.116.004862
- Gregory, M. R., Prouhet, P. M., Russell, C., & Pfannenstiel, B. R. (2018). Quality of life for parents of children with congenital heart defect: A systematic review. The Journal of Cardiovascular Nursing, 33(4), 363-371. https://doi.org/10.1097/JCN.0000000000000466
- Sood, E., Karpyn, A., Demianczyk, A. C., Ryan, J., Delaplane, E. A., Neely, T., ... & Kazak, A. E. (2018). Mothers and fathers experience stress of congenital heart disease differently: recommendations for pediatric critical care. Pediatric critical care medicine: a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies, 19(7), 626. https://dx.doi.org/10.1097%2FPCC.0000000000001528
Perinatal psychological care
- Kasparian, N. A. (2019). Heart care before birth: A psychobiological perspective on fetal cardiac diagnosis. Progress in Pediatric Cardiology, 101142. https://doi.org/10.1016/j.ppedcard.2019.101142
Psychological interventions
- Tesson, S., Butow, P. N., Sholler, G. F., Sharpe, L., Kovacs, A. H., & Kasparian, N. A. (2019). Psychological interventions for people affected by childhood-onset heart disease: A systematic review. Health psychology : official journal of the Division of Health Psychology, American Psychological Association, 38(2), 151–161. https://doi.org/10.1037/hea0000704
- McCusker, C. G., Doherty, N. N., Molloy, B., Rooney, N., Mulholland, C., Sands, A., ... & Casey, F. (2012). A randomized controlled trial of interventions to promote adjustment in children with congenital heart disease entering school and their families. Journal of pediatric psychology, 37(10), 1089-1103. https://doi.org/10.1093/jpepsy/jss092
Psychosocial outcomes (child & adolescent)
- Abda, A., Bolduc, M. E., Tsimicalis, A., Rennick, J., Vatcher, D., & Brossard-Racine, M. (2019). Psychosocial outcomes of children and adolescents with severe congenital heart defect: a systematic review and meta-analysis. Journal of Pediatric Psychology, 44(4), 463-477. https://doi.org/10.1093/jpepsy/jsy085
- Clancy, T., Jordan, B., de Weerth, C., & Muscara, F. (2019). Early emotional, behavioural and social development of infants and young children with congenital heart disease: A systematic review. Journal of Clinical Psychology in Medical Settings, 1-18. https://doi.org/10.1007/s10880-019-09651-1
- Dahlawi, N., Milnes, L. J., & Swallow, V. (2020). Behaviour and emotions of children and young people with congenital heart disease: A literature review. Journal of Child Health Care, 24(2), 317-332. https://doi.org/10.1177%2F1367493519878550
- Ladak, L. A., Hasan, B. S., Gullick, J., & Gallagher, R. (2019). Health-related quality of life in congenital heart disease surgery in children and young adults: a systematic review and meta-analysis. Archives of disease in childhood, 104(4), 340–347. https://doi.org/10.1136/archdischild-2017-313653
- Jackson, J. L., Misiti, B., Bridge, J. A., Daniels, C. J., & Vannatta, K. (2015). Emotional functioning of adolescents and adults with congenital heart disease: a meta‐analysis. Congenital heart disease, 10(1), 2-12. https://doi.org/10.1111/chd.12178
- Drakouli, M., Petsios, K., Giannakopoulou, M., Patiraki, E., Voutoufianaki, I., & Matziou, V. (2015). Determinants of quality of life in children and adolescents with CHD: a systematic review. Cardiology in the young, 25(6), 1027–1036. https://doi.org/10.1017/S1047951115000086
- Schrøder, M., Boisen, K. A., Reimers, J., Teilmann, G., & Brok, J. (2016). Quality of life in adolescents and young adults with CHD is not reduced: a systematic review and meta-analysis. Cardiology in the young, 26(3), 415–425. https://doi.org/10.1017/S104795111500181X
- Drakouli, M., Petsios, K., Giannakopoulou, M., Patiraki, E., Voutoufianaki, I., & Matziou, V. (2015). Determinants of quality of life in children and adolescents with CHD: A systematic review. Cardiology in the Young, 25(6), 1027-1036. https://doi.org/10.1017/S1047951115000086
Qualitative studies
- Chong, L., Fitzgerald, D. A., Craig, J. C., Manera, K. E., Hanson, C. S., Celermajer, D., Ayer, J., Kasparian, N. A., & Tong, A. (2018). Children's experiences of congenital heart disease: a systematic review of qualitative studies. European journal of pediatrics, 177(3), 319–336. https://doi.org/10.1007/s00431-017-3081-y
Social determinants & health disparities
- Qadir, A. A., Marino, B. S., Cassedy, A., Wray, J., & Rosenthal, D. N. (2020). Behavioral and Emotional Outcomes in Children with Congenital Heart Disease: Effects of Disease Severity, Social Determinants of Health, Disease-Related Chronic Stress, and Psychosocial Adaptation. https://doi.org/10.1542/peds.146.1_MeetingAbstract.595
- Lisanti, A. J. (2018). Parental Stress and Resilience in CHD: A New Frontier for Health Disparities Research. Cardiology in the Young 28(9): 1142–50. https://doi.org/10.1017/S1047951118000963
- Deguen, S., Kihal, W., Jeanjean, M., Padilla, C., & Zmirou-Navier, D. (2016). Neighborhood deprivation and risk of congenital heart defects, neural tube defects and orofacial clefts: A systematic review and meta-analysis. PloS one, 11(10), e0159039. https://doi.org/10.1371/journal.pone.0159039
Transition to adult care
- Heery, E., Sheehan, A. M., While, A. E., & Coyne, I. (2015). Experiences and Outcomes of Transition from Pediatric to Adult Health Care Services for Young People with Congenital Heart Disease: A Systematic Review. Congenital heart disease, 10(5), 413–427. https://doi.org/10.1111/chd.12251
- Sable, C., Foster, E., Uzark, K., Bjornsen, K., Canobbio, M. M., Connolly, H. M., ... & Reid, G. J. (2011). Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation, 123(13), 1454-1485. https://doi.org/10.1161/CIR.0b013e3182107c56
Transplant
- Cousino, M. K., Rea, K. E., Schumacher, K. R., Magee, J. C., & Fredericks, E. M. (2017). A systematic review of parent and family functioning in pediatric solid organ transplant populations. Pediatric Transplantation, 21(3), e12900. https://doi.org/10.1111/petr.12900
- Cushman, G. K., Stolz, M. G., Blount, R. L., & Reed, B. (2020). Executive functioning in pediatric solid organ transplant recipients: A meta-analytic review. Transplantation, 104(2), 357-366. https://doi.org/10.1097/TP.0000000000002954
- Dew, M. A., Rosenberger, E. M., Myaskovsky, L., DiMartini, A. F., Dabbs, A. J. D., Posluszny, D. M., ... & Greenhouse, J. B. (2015). Depression and anxiety as risk factors for morbidity and mortality after organ transplantation: a systematic review and meta-analysis. Transplantation, 100(5), 988. https://doi.org/10.1097%2FTP.0000000000000901
- Doumouras, B. S., Alba, A. C., Foroutan, F., Burchill, L. J., Dipchand, A. I., & Ross, H. J. (2016). Outcomes in adult congenital heart disease patients undergoing heart transplantation: a systematic review and meta-analysis. The Journal of Heart and Lung Transplantation, 35(11), 1337-1347. https://doi.org/10.1016/j.healun.2016.06.003
- Killian, M. O. (2017). Psychosocial predictors of medication adherence in pediatric heart and lung organ transplantation. Pediatric transplantation, 21(4), e12899. https://doi.org/10.1111/petr.13188
- Kulkarni, A., Patel, N., Singh, T. P., Mossialos, E., & Mehra, M. R. (2019). Risk factors for death or heart transplantation in single-ventricle physiology (tricuspid atresia, pulmonary atresia, and heterotaxy): A systematic review and meta-analysis. The Journal of Heart and Lung Transplantation, 38(7), 739-747. https://doi.org/10.1016/j.healun.2019.04.001
- Oliva, M., Singh, T. P., Gauvreau, K., VanderPluym, C. J., Bastardi, H. J., & Almond, C. S. (2013). Impact of medication non-adherence on survival after pediatric heart transplantation in the USA. The Journal of Heart and Lung Transplantation, 32(9), 881-888. https://doi.org/10.1016/j.healun.2013.03.008
Clinical resources
Edinburgh Postnatal Depression Scale
edinburghscale.pdf | |
File Size: | 139 kb |
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