Abstract
The absence of cardiac symptoms, the improved exercise tolerance and the increased life expectancy are the advantages of a successful cardiac device therapy. Nevertheless, the fact of a lifelong device dependency, the inherent possibility of device malfunction and the progression of the underlying heart disease may impact the health-related quality of life (HRQoL) and the psychological adjustment of these individuals. To date, an overview of findings on these topics is lacking. The objective of this study was to evaluate and summarize the current evidence on generic and disease-specific HRQoL and psychological adjustment in paediatric patients with a pacemaker (PM) or an implantable cardioverter defibrillator (ICD). A systematic literature search was conducted using relevant databases and predefined keywords. Study selection was conducted based on predefined inclusion criteria. Fourteen studies were selected which were of varying methodological quality. Overall, the studies indicated that PM/ICD patients themselves and their parents scored lower than healthy controls on generic HRQoL scales and reported similar disease-related HRQoL as patients with severe forms of congenital heart disease. Regarding psychological adjustment outcome, PM recipients and norms were not significantly different with respect to anxiety and depression symptoms, while ICD patients showed more signs of anxiety than depression. HRQoL and psychological health should be considered when setting therapy goals and evaluating medical treatment success. This approach allows an early intervention in patients at risk of maladaptation, which is especially important in the young patient undergoing crucial developmental stages.
Similar content being viewed by others
References
Koenig P, Hijazi Z, Zimmerman F (2004) Essentials of pediatric cardiology. McGraw-Hill Medical Publishing Division, New York
Epstein AE, DiMarco JP, Ellenbogen KA, Estes NA 3rd, Freedman RA, Gettes LS, Gillinov AM, Gregoratos G, Hammill SC, Hayes DL, Hlatky MA, Newby LK, Page RL, Schoenfeld MH, Silka MJ, Stevenson LW, Sweeney MO, Smith SC Jr, Jacobs AK, Adams CD, Anderson JL, Buller CE, Creager MA, Ettinger SM, Faxon DP, Halperin JL, Hiratzka LF, Hunt SA, Krumholz HM, Kushner FG, Lytle BW, Nishimura RA, Ornato JP, Page RL, Riegel B, Tarkington LG, Yancy CW, American College of Cardiology/American Heart Association Task Force on Practice G, American Association for Thoracic S, Society of Thoracic S (2008) ACC/AHA/HRS 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Revise the ACC/AHA/NASPE 2002 Guideline Update for Implantation of Cardiac Pacemakers and Antiarrhythmia Devices) developed in collaboration with the American Association for Thoracic Surgery and Society of Thoracic Surgeons. J Am Coll Cardiol 51(21):e1–e62
Epstein AEDJ, Ellenbogen KA, Estes NA 3rd, Freedman RA, Gettes LS, Gillinov AM, Gregoratos G, Hammill SC, Hayes DL, Hlatky MA, Newby LK, Page RL, Schoenfeld MH, Silka MJ, Stevenson LW, Sweeney MO, Tracy CM, Epstein AE, Darbar D, DiMarco JP, Dunbar SB, Estes NA 3rd, Ferguson TB Jr, Hammill SC, Karasik PE, Link MS, Marine JE, Schoenfeld MH, Shanker AJ, Silka MJ, Stevenson LW, Stevenson WG, Varosy PD; American College of Cardiology Foundation; American Heart Association Task Force on Practice Guidelines; Heart Rhythm Society (2013) 2012 ACCF/AHA/HRS focused update incorporated into the ACCF/AHA/HRS 2008 guidelines for device-based therapy of cardiac rhythm abnormalities: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines and the Heart Rhythm Society. J Am Coll Cardiol 61 (3):e6–e75
Keane J, Lock J, Fyler D (2006) Nadas’ Pediatric Cardiology. Saunders, Philadelphia
Hoppe U (2011) Rhythmusstörungen des Herzens, Krankheiten des Herzens, des Kreislaufs und der herznahen Gefässe. In: Erdmann E (ed) Klinische Kardiologie, 8 edn. Springer, Heidelberg, pp 73–111
Stephenson E, Berul C (2014) Temporary and permanent pacemakers and automated internal defibrillators. In: Da Crus E, Ivy D, Jaggers J (eds) Pediatric and congenital cardiology, cardiac surgery and intensive care. Springer, London, pp 3019–3040
Leidy NK, Revicki DA, Genesté B (1999) Recommendations for evaluating the validity of quality of life claims for labeling and promotion. Value Health 2(2):113–127
Koot HM (2001) The study of quality of life: Concepts and methods. Quality of life in child and adolescent illness. Concepts, methods and findings. Routledge, Sussex
Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK (2004) Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value Health 7(1):79–92
Ravens-Sieberer U, Karow A, Barthel D, Klasen F (2014) How to assess quality of life in child and adolescent psychiatry. Dialogues Clin Neuro 16(2):147–158
Noeker M, Petermann F (2013) Chronisch-körperliche Erkrankungen. In: Petermann F (ed) Lehrbuch der Klinischen Kinderpsychologie. Hogrefe, Göttingen
World Health Organization (1992) The ICD-10 Classification of mental and behavioral disorders: clinical descriptions and diagnostic guidlines. World Health Organization, Geneva
Sass H, Wittchen HU, Zaudig M, Houben I (1998) Diagnostische Kriterien des Diagnostischen und Statistischen Manuals Psychischer Störungen (DSM-IV). Hogrefe, Göttingen
Cheng P, Gutierrez-Colina AM, Loiselle KA, Strieper M, Frias P, Gooden K, Blount RL (2014) Health-related quality of life and social support in pediatric patients with pacemakers. J Clin Psychol Med Sett 21(1):92–102
Alpern D, Uzark K, Dick M (1989) Psychosocial responses of children to cardiac pacemakers. J Pediatr 114(3):494–501
Costa R, da Silva KR, Mendonca RC, Nishioka S, Siqueira S, Tamaki WT, Crevelari ES, Moreira LF, Martinelli M (2007) Incidence of shock and quality of life in young patients with implantable cardioverter-defibrillator. Arq Bras Cardiol 88(3):258–264
da Silva KR, Costa R, De Oliveira RM, Lacerda MS, Huang AIU, Rossi MB, Crevelari ES, Tamaki WT, Martinelli M, Pietrobon R (2013) Quality of life and functional capacity after long-term right ventricular pacing in pediatrics and young adults with congenital atrioventricular block. Pace 36(12):1539–1549
Czosek RJ, Bonney WJ, Cassedy A, Mah DY, Tanel RE, Imundo JR, Singh AK, Cohen MI, Miyake CY, Fawley K, Marino BS (2012) Impact of cardiac devices on the quality of life in pediatric patients. Circ Arrhythm Electrophysiol 5(6):1064–1072
Czosek RJ, Cassedy AE, Wray J, Wernovsky G, Newburger JW, Mussatto KA, Mahony L, Tanel RE, Cohen MI, Franklin RC, Brown KL, Rosenthal D, Drotar D, Marino BS (2015) Quality of life in pediatric patients affected by electrophysiologic disease. Heart Rhythm 12(5):899–908
DeMaso DR, Lauretti A, Spieth L, van der Feen JR, Jay KS, Gauvreau K, Walsh EP, Berul CI (2004) Psychosocial factors and quality of life in children and adolescents with implantable cardioverter-defibrillators. Am J Cardiol 93(5):582–587
Webster G, Panek KA, Labella M, Taylor GA, Gauvreau K, Cecchin F, Martuscello M, Walsh EP, Berul CI, DeMaso DR (2014) Psychiatric functioning and quality of life in young patients with cardiac rhythm devices. Pediatrics 133(4):e964–e972
Eicken A, Kolb C, Lange S, Brodherr-Heberlein S, Zrenner B, Schreiber C, Hess J (2006) Implantable cardioverter defibrillator (ICD) in children. Int J Cardiol 107(1):30–35
Freedenberg VA, Thomas SA, Friedmann E (2015) A pilot study of a mindfulness based stress reduction program in adolescents with implantable cardioverter defibrillators or pacemakers. Pediatr Cardiol 36(4):786–795
Gaies MG, Watnick CS, Gurney JG, Bove EL, Goldberg CS (2011) Health-related quality of life in patients with congenitally corrected transposition of the great arteries. J Thorac Cardiov Sur 142(1):136–141
Koopman HM, Vrijmoet-Wiersma CMJ, Langius JND, van den Heuvel F, Clur SA, Blank CA, Blom NA, ten Harkel ADJ (2012) Psychological functioning and disease-related quality of life in pediatric patients with an implantable cardioverter defibrillator. Pediatr Cardiol 33(4):569–575
Sears SF, Hazelton AG, St Amant J, Matchett M, Kovacs A, Vazquez LD, Fairbrother D, Redfearn S, Hanisch D, Dubin A, Cannon BC, Fishbach P, Kanter R, Bryant RM (2011) Quality of life in pediatric patients with implantable cardioverter defibrillators. Am J Cardiol 107(7):1023–1027
Czosek RJ, Kaltman JR, Cassedy AE, Shah MJ, Vetter VL, Tanel RE, Wernovksy G, Wray J, Marino BS (2016) Quality of life of pediatric patients with long QT syndrome. Am J Cardiol 117(4):605–610
DeMaso DR, Neto LB, Hirshberg J (2009) Psychological and quality-of-life issues in the young patient with an implantable cardioverter-defibrillator. Heart Rhythm 6(1):130–132
Cochrane-Handbook-for-Systematic-Reviews-of-Interventions (2011). In: Higgins JPT, Green S (eds) Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The Cochrane Collaboration, Available from http://www.handbook.cochrane.org. Accessed March 2018.
Latal B, Helfricht S, Fischer JE, Bauersfeld U, Landolt MA (2009) Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review. BMC Pediatr 9:6
Magyar-Russell G, Thombs BD, Cai JX, Baveja T, Kuhl EA, Singh PP, Barroso MMB, Arthurs E, Roseman M, Amin N, Marine JE, Ziegelstein RC (2011) The prevalence of anxiety and depression in adults with implantable cardioverter defibrillators: a systematic review. J Psychosom Res 71(4):223–231
Bilge AK, Ozben B, Demircan S, Cinar M, Yilmaz E, Adalet K (2006) Depression and anxiety status of patients with implantable cardioverter defibrillator and precipitating factors. Pacing Clin Electrophysiol 29(6):619–626
Sowell LV, Kuhl EA, Sears SF, Klodell CT, Conti JB (2006) Device implant technique and consideration of body image: specific procedures for implantable cardioverter defibrillators in female patients. J Womens Health (Larchmt) 15(7):830–835
Walker RL, Campbell KA, Sears SF, Glenn BA, Sotile R, Curtis AB, Conti JB (2004) Women and the implantable cardioverter defibrillator: a lifespan perspective on key psychosocial issues. Clin Cardiol 27(10):543–546
Sears SF, Rosman L, Sasaki S, Kondo Y, Sterns LD, Schloss EJ, Kurita T, Meijer A, Raijmakers J, Gerritse B, Auricchio A (2018) Defibrillator shocks and their effect on objective and subjective patient outcomes: results of the PainFree SST clinical trial. Heart Rhythm 15(5):734–740
Moher D, Liberati A, Tetzlaff J, Altman DG, Grp P (2009) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA Statement. PLoS Med 6(7):e1000097
Funding
This study did not receive any grant from funding agencies in the public, commercial, or not-for-profit organization.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no competing interests.
Ethics Approval
This study was approved by the ethical review board of the Canton Zurich, Switzerland, and was performed in full accordance with the Declaration of Helsinki (2015-0322).
Informed Consent
All parents provided written informed consent after study procedures and aims had been explained in detail. All children provided verbal assent, while adolescents older than 14 years of age also provided written informed consent.
Rights and permissions
About this article
Cite this article
Pyngottu, A., Werner, H., Lehmann, P. et al. Health-Related Quality of Life and Psychological Adjustment of Children and Adolescents with Pacemakers and Implantable Cardioverter Defibrillators: A Systematic Review. Pediatr Cardiol 40, 1–16 (2019). https://doi.org/10.1007/s00246-018-2038-x
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00246-018-2038-x