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The mental health of adolescents and pre-adolescents living with inherited arrhythmia syndromes: a systematic review of the literature

Published online by Cambridge University Press:  18 January 2018

Patricia E. Longmuir*
Affiliation:
Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada Department of Paediatrics, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada
Margaret Sampson
Affiliation:
Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
Jennifer Ham
Affiliation:
Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
Makenzie Weekes
Affiliation:
Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
Bhavika J. Patel
Affiliation:
Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
Robert M. Gow
Affiliation:
Department of Paediatrics, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada Division of Cardiology, Children’s Hospital of Eastern Ontario, Ottawa, Ontario, Canada
*
Author for correspondence: Dr P. E. Longmuir, Scientist, Children's Hospital of Eastern Ontario Research Institute, 401 Smyth Road, RI#1-214, Ottawa, ON, Canada K1H 8L1. Tel: 613 738 3908; Fax: 613 738 4800; E-mail: [email protected]

Abstract

Potentially fatal arrhythmias add to the mental health challenges of adolescence. This systematic review sought to summarise current knowledge regarding the mental health of adolescents and pre-adolescents diagnosed with inherited arrhythmia syndromes. Searches combining psychological problems with inherited cardiac arrhythmia diagnoses identified 16 studies with paediatric (<18 years) inherited arrhythmia patients. All studies were cross-sectional; 8/16 required an implantable cardioverter defibrillator. Methods were quantitative (n=11), qualitative (n=4), or mixed (n=1), with 14–100% of participants having an inherited arrhythmia syndrome. Mean/median age in 13/16 studies was 12–16 years. Patients and parents reported lower quality of life, particularly in relation to physical function, social relationships, restriction of peer activities, bodily pain, and mental and emotional health. Self-perceptions and behaviour were similar to healthy populations. Rates of anxiety and depression (15–33% of these patients) were not increased in these studies where patients were assessed 2+ years after diagnosis. Higher mental health risk occurred among patients who have a diagnosed sibling, those with cardiomyopathy, and those who report decreased quality of life. Mental health research among youth with inherited arrhythmias is extremely limited and of low quality. Data, primarily from patients 2–4 years after diagnosis or treatment with an implantable cardioverter defibrillator, indicate that quality of life may be decreased and 15–33% experience mental health issues. Future research is required to examine the mental health and quality of life of paediatric patients with inherited arrhythmia syndromes, whether or not they have an implantable cardioverter defibrillator, from time of diagnosis.

Type
Review Article
Copyright
© Cambridge University Press 2018 

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References

1. Lehnart, SE, Ackerman, MJ, Benson, DW, et al. Inherited arrhythmias: A National Heart, Lung, and Blood Institute and Office of Rare Diseases Workshop consensus report about the diagnosis, phenotyping, molecular mechanisms, and therapeutic approaches for primary cardiomyopathies of gene mutations affecting ion channel function. Circulation 2007; 116: 23252345.CrossRefGoogle ScholarPubMed
2. Kellerman, J, Zeltzer, L, Ellenberg, L, Dash, J, Rigler, D. Psychological effects of illness in adolescence. I. Anxiety, self-esteem, and perception of control. J Pediatr 1980; 97: 126131.Google Scholar
3. Ladwig, KH, Baumert, J, Marten-Mittag, B, Kolb, C, Zrenner, B, Schmitt, C. Posttraumatic stress symptoms and predicted mortality in patients with implantable cardioverter-defibrillators: results from the prospective living with an implanted cardioverter-defibrillator study. Arch Gen Psychiatry 2008; 65: 13241330.Google Scholar
4. Pedersen, SS, Van Domburg, RT, Theuns, DAMJ, Jordaens, L, Erdman, RAM. Concerns about the implantable cardioverter defibrillator: a determinant of anxiety and depressive symptoms independent of experienced shocks. Am Heart J 2005; 149: 664669.Google Scholar
5. Vitale, MB, Funk, M. Quality of life in younger persons with an implantable cardioverter defibrillator. Dimens Crit Care Nurs 1995; 14: 100111.CrossRefGoogle ScholarPubMed
6. Priori, SG, Blomstrom-Lundqvist, C, Mazzanti, A, et al. 2015 ESC Guidelines for the management of patients with ventricular arrhythmias and the prevention of sudden cardiac death: The Task Force for the Management of Patients with Ventricular Arrhythmias and the Prevention of Sudden Cardiac Death of the European Society of Cardiology (ESC). Eur Heart J 2015; 36: 27932867.Google Scholar
7. Bostwick, JM, Sola, CL. An updated review of implantable cardioverter/defibrillators, induced anxiety, and quality of life [review]. Heart Fail Clin 2011; 7: 101108.Google Scholar
8. Pilmer, CM, Kirsh, JA, Hildebrandt, D, Krahn, A, Gow, R. Sudden cardiac death in children and adolescents between 1 and 19 years of age. Heart Rhythm 2014; 11: 239245.Google Scholar
9. Heidbuchel, H, Corrado, D, Biffi, A, et al. Recommendations for participation in leisure-time physical activity and competitive sports of patients with arrhythmias and potentially arrhythmogenic conditions Part II: Ventricular arrhythmias, channelopathies and implantable defibrillators. Eur J Cardiovasc Prev Rehabil 2006; 13: 676686.Google Scholar
10. Heidbuchel, H, Panhuyzen-Goedkoop, N, Corrado, D, et al. Recommendations for participation in leisure-time physical activity and competitive sports in patients with arrhythmias and potentially arrhythmogenic conditions. Part I: Supraventricular arrhythmias and pacemakers. Eur J Cardiovasc Prev Rehabil 2006; 13: 475484.Google Scholar
11. Strong, WB, Malina, RM, Blimkie, CJR, et al. Evidence based physical activity for school-age youth. J Pediatr 2005; 146: 732737.Google Scholar
12. Ackerman, MJ, Zipes, DP, Kovacs, RJ, Maron, BJ. AHA/ACC Scientific Statement: eligibility and disqualification recommendations for competitive athletes with cardiovascular abnormalities: task force 10: The cardiac channelopathies. J Am Coll Cardiol 2015; 66: 24242428.Google Scholar
13. Johnson, JN, Ackerman, MJ. Return to play? Athletes with congenital long QT syndrome. Br J Sports Med 2013; 47: 2833.Google Scholar
14. Zeigler, VL, Decker-Walters, B. Determining psychosocial research priorities for adolescents wtih implantable cardioverter defibrillators using Delphi methodology. J Cardiovasc Nurs 2010; 25: 398404.Google Scholar
15. Higgins JPT, Green S (eds). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The Cochrane Collaboration, 2011. Retrieved from http://handbook.cochrane.org.Google Scholar
16. Wojcicka, M, Lewandowski, M, Smolis-Bak, E, Szwed, H. Psychological and clinical problems in young adults with implantable cardioverter-defibrillators. Kardiol Pol 2008; 66: 10501058.Google Scholar
17. Koopman, HM, Vrijmoet-Wiersma, CM, Langius, JN, et al. Psychological functioning and disease-related quality of life in pediatric patients with an implantable cardioverter defibrillator. Pediatr Cardiol 2012; 33: 569575.Google Scholar
18. Stefanelli, CB, Bradley, DJ, Leroy, S, Dick, M II, Serwer, GA, Fischbach, PS. Implantable cardioverter defibrillator therapy for life-threatening arrhythmias in young patients. J Interv Card Electrophysiol 2002; 6: 235244.Google Scholar
19. Costa, R, da Silva, KR, Castro Mendonca, R, et al. Incidence of shock and quality of life in young patients with implantable cardioverter-defibrillator. Arq Bras Cardiol 2007; 88: 229235.Google ScholarPubMed
20. Sleeper, LA, Towbin, JA, Colan, SD, et al. Health-related quality of life and functional status are associated with cardiac status and clinical outcome in children with cardiomyopathy. J Pediatr 2016; 170: 17380.e1-4.Google Scholar
21. Czosek, RJ, Kaltman, JR, Cassedy, AE, et al. Quality of life of pediatric patients with long QT syndrome. Am J Cardiol 2016; 117: 605610.Google Scholar
22. Bratt, EL, Sparud-Lundin, C, Ostman-Smith, I, et al. The experience of being diagnosed with hypertrophic cardiomyopathy through family screening in childhood and adolescence. Cardiol Young 2012; 22: 528535.Google Scholar
23. Czosek, RJ, Cassedy, AE, Wray, J, et al. Quality of life in pediatric patients affected by electrophysiologic disease. Heart Rhythm 2015; 12: 899908.Google Scholar
24. Eicken, A, Kolb, C, Lange, S, et al. Implantable cardioverter defibrillator (ICD) in children. Int J Cardiol 2006; 107: 3035.CrossRefGoogle ScholarPubMed
25. Giuffre, RM, Gupta, S, Crawford, SG, Leung, AKC. Fears and anxiety in children with Long-QT Syndrome compared to children with asthma. J Natl Med Assoc 2008; 100: 420424.Google Scholar
26. Meulenkamp, TM, Tibben, A, Mollema, ED, et al. Predictive genetic testing for cardiovascular diseases: impact on carrier children. Am J Med Genet 2008; 146A(24): 31363146.Google Scholar
27. Antiel, RM, Box, JM, Joyce, DD, et al. Quality of life after videoscopic left cardiac sympathetic denervation in patients with potentially life-threatening cardiac channelopathies/cardiomyopathies. Heart Rhythm 2016; 13: 6269.Google Scholar
28. Rahman, B, Macciocca, I, Sahhar, M, Kamberi, S, Connell, V, Duncan, RE. Adolescents wtih implantable cardioverter defibrillators: a patient and parent perspective. PACE 2012; 35: 6272.Google Scholar
29. Czosek, RJ, Bonney, WJ, Cassedy, A, et al. Impact of cardiac devices on the quality of life of pediatric patients. Circ Arrhythm Electrophysiol 2012; 5: 10641072.Google Scholar
30. Demaso, DR, Lauretti, A, Spieth, L, et al. Psychosocial factors and quality of life in children and adolescents with implantable cardioverter-defibrillators. Am J Cardiol 2004; 93: 582587.CrossRefGoogle ScholarPubMed
31. Patel, B, Lai, L, Goldfield, G, Sananes, R, Longmuir, PE. Psychosocial health and quality of life among children with cardiac diagnoses: agreement and discrepancies between parent and child reports. Cardiol Young 2016; 27: 713721.CrossRefGoogle ScholarPubMed
32. Wikipedia. List of countries by gross national income (nominal, Atlas method) per capita. 2016, p. 1. Retrieved December 21, 2017, from https://en.wikipedia.org/wiki/List_of_countries_by_GNI_(nominal,_Atlas_method)_per_capita.Google Scholar
33. Diller, GP, Giardini, A, Dimopoulos, K, Gargiulo, G, Muller, J, Derrick, G. Predictors of morbidity and mortality in contemporary Fontan patients: results from a multicenter study including cardiopulmonary exercise testing in 321 patients. Eur Heart J 2010; 31: 30733083.Google Scholar
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