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Quality of Life Research

, Volume 28, Issue 9, pp 2471–2480 | Cite as

Posttraumatic stress and health-related quality of life in parents of children with cardiac rhythm devices

  • Helene WernerEmail author
  • Christian Balmer
  • Phaedra Lehmann
Article

Abstract

Purpose

Studies have shown a high prevalence of post-traumatic stress disorders (PTSD) among parents of children with life-threatening diseases. However, it is yet unknown whether parents of children with cardiac rhythm device develop posttraumatic stress symptoms or even PTSD.

Methods

This cross-sectional investigation is part of a comprehensive single-center study of long-term medical and psychosocial outcomes in pediatric patients with pacemaker (PM) and implantable cardioverter defibrillator (ICD). 69 patients (78%) were included in the study, with the participation of 69 mothers and 57 fathers. Parents completed the Posttraumatic Diagnostic Scale and Medical Outcomes Study Short Form-36 item questionnaire. Child’s medical data was collected retrospectively from patients’ hospital records.

Results

At assessment, the patients (39% females) were on average 11.2 years old. The predominant device type was PM in 56 cases (81%). The mean time since device implantation was 6.3 years (SD = 4.3). Full heart-disease related PTSD was diagnosed in one mother and no father, while partial heart-disease-related PTSD was diagnosed in 3 mothers (4%) and 2 fathers (4%). Parental HRQoL—especially regarding the mental health dimension—was affected in both parents. In both parents, total PTSD symptom severity scores were a significant predictor for mental health summary scores after controlling for child age at implantation, presence of other non-cardiac disease in the child, parental age, and presence of own chronic disease.

Conclusions

Special attention should be given to parental PTSD symptoms in the clinical follow-up of PM and ICD patients as some parents might probably benefit from psychological support.

Keywords

Cardiology Arrhythmia Pacemaker Implantable cardioverter defibrillator Parents Childhood 

Notes

Acknowledgements

We thank Silvia Hilfiker, Karin Steinmann and Alina Rüegg for patient recruitment and data collection.

References

  1. 1.
    Stuber, M. L., & Shemesh, E. (2006). Post-traumatic stress response to life-threatening illnesses in children and their parents. Child and Adolescent Psychiatric Clinics of North America, 15(3), 597–609.  https://doi.org/10.1016/j.chc.2006.02.006.CrossRefPubMedGoogle Scholar
  2. 2.
    Melnyk, B. M., Alpert-Gillis, L., Feinstein, N. F., Crean, H. F., Johnson, J., Fairbanks, E., et al. (2004). Creating opportunities for parent empowerment: Program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics, 113(6), E597–E607.  https://doi.org/10.1542/peds.113.6.e597.CrossRefPubMedGoogle Scholar
  3. 3.
    Nelson, L. P., & Gold, J. I. (2012). Posttraumatic stress disorder in children and their parents following admission to the pediatric intensive care unit: A review. Pediatric Critical Care Medicine, 13(3), 338–347.  https://doi.org/10.1097/PCC.0b013e3182196a8f.CrossRefPubMedGoogle Scholar
  4. 4.
    Ernst, M. M., Marino, B. S., Cassedy, A., Piazza-Waggoner, C., Franklin, R. C., Brown, K., et al. (2018). Biopsychosocial predictors of quality of life outcomes in pediatric congenital heart disease. Pediatric Cardiology, 39(1), 79–88.  https://doi.org/10.1007/s00246-017-1730-6.CrossRefPubMedGoogle Scholar
  5. 5.
    Franich-Ray, C., Bright, M. A., Anderson, V., Northam, E., Cochrane, A., Menahem, S., et al. (2013). Trauma reactions in mothers and fathers after their infant’s cardiac surgery. Journal of Pediatric Psychology, 38(5), 494–505.  https://doi.org/10.1093/jpepsy/jst015.CrossRefPubMedGoogle Scholar
  6. 6.
    Cantwell-Bartl, A. M., & Tibballs, J. (2013). Psychosocial experiences of parents of infants with hypoplastic left heart syndrome in the PICU. Pediatric Critical Care Medicine, 14(9), 869–875.  https://doi.org/10.1097/PCC.0b013e31829b1a88.CrossRefPubMedGoogle Scholar
  7. 7.
    Helfricht, S., Latal, B., Fischer, J. E., Tomaske, M., & Landolt, M. A. (2008). Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: A prospective cohort study. Pediatric Critical Care Medicine, 9(2), 217–223.  https://doi.org/10.1097/PCC.0b013e318166eec3.CrossRefPubMedGoogle Scholar
  8. 8.
    Landolt, M. A., Buechel, E. V., & Latal, B. (2011). Predictors of parental quality of life after child open heart surgery: A 6-month prospective study. Journal of Pediatrics, 158(1), 37–43.  https://doi.org/10.1016/j.jpeds.2010.06.037.CrossRefPubMedGoogle Scholar
  9. 9.
    Webster, G., Panek, K. A., Labella, M., Taylor, G. A., Gauvreau, K., Cecchin, F., et al. (2014). Psychiatric functioning and quality of life in young patients with cardiac rhythm devices. Pediatrics, 133(4), e964–e972.  https://doi.org/10.1542/peds.2013-1394.CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Derogatis, L. R., & Melisaratos, N. (1983). The Brief Symptom Inventory: An introductory report. Psychological Medicine, 13(3), 595–605.CrossRefGoogle Scholar
  11. 11.
    American-Psychiatric-Association. (1994). The diagnostic and statistical manual of mental disorders. Washington, DC: American Psychiatric Association.Google Scholar
  12. 12.
    Koenig, P., Hijazi, Z. M., & Zimmerman, F. (2004). Essential pediatric cardiology. New York: McGraw-Hill Medical Publishing Division.Google Scholar
  13. 13.
    Epstein, A. E., DiMarco, J. P., Ellenbogen, K. A., Estes, N. A., 3rd, Freedman, R. A., Gettes, L. S., et al. (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. Journal of the American College of Cardiology, 51(21), e1–e62.  https://doi.org/10.1016/j.jacc.2008.02.032.CrossRefPubMedGoogle Scholar
  14. 14.
    Epstein, A. E., DiMarco, J. P., Ellenbogen, K. A., Estes, N. A., 3rd, Freedman, R. A., Gettes, L. S., et al. (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. Journal of the American College of Cardiology, 61(3), e6–e75.CrossRefPubMedGoogle Scholar
  15. 15.
    World-Health-Organization. (1948). Constitution of the World Health Organization basic document. Geneva: World-Health-Organization.Google Scholar
  16. 16.
    Eagleson, K. J., Justo, R. N., Ware, R. S., Johnson, S. G., & Boyle, F. M. (2013). Health-related quality of life and congenital heart disease in Australia. Journal of Paediatrics and Child Health, 49(10), 856–864.  https://doi.org/10.1111/jpc.12296.CrossRefPubMedGoogle Scholar
  17. 17.
    Lawoko, S., & Soares, J. J. (2003). Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Quality of Life Research, 12(6), 655–666.CrossRefGoogle Scholar
  18. 18.
    Arafa, M. A., Zaher, S. R., El-Dowaty, A. A., & Moneeb, D. E. (2008). Quality of life among parents of children with heart disease. Health and Quality of Life Outcomes, 6, 91.  https://doi.org/10.1186/1477-7525-6-91.CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Foa, E. B., Cashman, L., Jaycox, L., & Perry, K. (1997). The validation of a self-report measure of posttraumatic stress disorder: The Posttraumatic Diagnostic Scale. Psychological Assessment, 9(4), 445–451.  https://doi.org/10.1037//1040-3590.9.4.445.CrossRefGoogle Scholar
  20. 20.
    Griesel, D., Wessa, M., & Flor, H. (2006). Psychometric qualities of the German version of the Posttraumatic Diagnostic Scale (PTDS). Psychological Assessment, 18(3), 262–268.  https://doi.org/10.1037/1040-3590.18.3.262.CrossRefPubMedGoogle Scholar
  21. 21.
    Stein, M. B., Walker, J. R., Hazen, A. L., & Forde, D. R. (1997). Full and partial posttraumatic stress disorder: Findings from a community survey. American Journal of Psychiatry, 154(8), 1114–1119.CrossRefPubMedGoogle Scholar
  22. 22.
    Ware, J., Snow, K., & Kosinski, M. (2000). SF-36 Health Survey: Manual and interpretation guide. Lincoln, RI: Quality Metric Inc.Google Scholar
  23. 23.
    Bullinger, M., & Kirchberger, I. (1998). SF-36 Fragebogen zum Gesundheitszustand. Handanweisung. Göttingen: Hogrefe.Google Scholar
  24. 24.
    Landolt, M. A., & Vollrath, M. (1998). Life event scale. Zurich: University Childern’s Hospital Zurich.Google Scholar
  25. 25.
    Largo, R. H., Pfister, D., Molinari, L., Kundu, S., Lipp, A., & Duc, G. (1989). Significance of prenatal, perinatal and postnatal factors in the development of AGA preterm infants at five to seven years. Developmental Medicine and Child Neurology, 31(4), 440–456.CrossRefPubMedGoogle Scholar
  26. 26.
    Cohen, J. (1992). A power primer. Psychological Bulletin, 112(1), 155–159.  https://doi.org/10.1037/0033-2909.112.1.155.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Kazak, A. E., Kassam-Adams, N., Schneider, S., Zelikovsky, N., Alderfer, M. A., & Rourke, M. (2006). An integrative model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 31(4), 343–355.  https://doi.org/10.1093/jpepsy/jsj054.CrossRefPubMedGoogle Scholar
  28. 28.
    Price, J., Kassam-Adams, N., Alderfer, M. A., Christofferson, J., & Kazak, A. E. (2016). Systematic review: A reevaluation and update of the integrative (trajectory) model of pediatric medical traumatic stress. Journal of Pediatric Psychology, 41(1), 86–97.  https://doi.org/10.1093/jpepsy/jsv074.CrossRefPubMedGoogle Scholar
  29. 29.
    Trickey, D., Siddaway, A. P., Meiser-Stedman, R., Serpell, L., & Field, A. P. (2012). A meta-analysis of risk factors for post-traumatic stress disorder in children and adolescents. Clinical Psychology Review, 32(2), 122–138.  https://doi.org/10.1016/j.cpr.2011.12.001.CrossRefPubMedGoogle Scholar
  30. 30.
    Wittchen, H. U., Jacobi, F., Rehm, J., Gustavsson, A., Svensson, M., Jonsson, B., et al. (2011). The size and burden of mental disorders and other disorders of the brain in Europe 2010. European Neuropsychopharmacology, 21(9), 655–679.  https://doi.org/10.1016/j.euroneuro.2011.07.018.CrossRefPubMedGoogle Scholar
  31. 31.
    da Silva, K. R., Costa, R., De Oliveira, R. M., Lacerda, M. S., Huang, A. I. U., Rossi, M. B., et al. (2013). Quality of life and functional capacity after long-term right ventricular pacing in pediatrics and young adults with congenital atrioventricular block. Pacing and Clinical Electrophysiology, 36(12), 1539–1549.  https://doi.org/10.1111/pace.12258.CrossRefPubMedGoogle Scholar
  32. 32.
    Czosek, R. J., Bonney, W. J., Cassedy, A., Mah, D. Y., Tanel, R. E., Imundo, J. R., et al. (2012). Impact of cardiac devices on the quality of life in pediatric patients. Circulation: Arrhythmia and Electrophysiology, 5(6), 1064–1072.  https://doi.org/10.1161/CIRCEP.112.973032.CrossRefGoogle Scholar
  33. 33.
    Gaies, M. G., Watnick, C. S., Gurney, J. G., Bove, E. L., & Goldberg, C. S. (2011). Health-related quality of life in patients with congenitally corrected transposition of the great arteries. Journal of Thoracic and Cardiovascular Surgery, 142(1), 136–141.  https://doi.org/10.1016/j.jtcvs.2010.11.035.CrossRefPubMedGoogle Scholar
  34. 34.
    Cheng, P., Gutierrez-Colina, A. M., Loiselle, K. A., Strieper, M., Frias, P., Gooden, K., et al. (2014). Health related quality of life and social support in pediatric patients with pacemakers. Journal of Clinical Psychology in Medical Settings, 21(1), 92–102.  https://doi.org/10.1007/s10880-013-9381-0.CrossRefPubMedGoogle Scholar
  35. 35.
    Sears, S. F., Hazelton, A. G., St Amant, J., Matchett, M., Kovacs, A., Vazquez, L. D., et al. (2011). Quality of life in pediatric patients with implantable cardioverter defibrillators. American Journal of Cardiology, 107(7), 1023–1027.  https://doi.org/10.1016/j.amjcard.2010.11.027.CrossRefPubMedGoogle Scholar
  36. 36.
    Costa, R., da Silva, K. R., Mendonca, R. C., Nishioka, S., Siqueira, S., Tamaki, W. T., et al. (2007). Incidence of shock and quality of life in young patients with implantable cardioverter-defibrillator. Arquivos Brasileiros de Cardiologia, 88(3), 258–264.  https://doi.org/10.1590/S0066-782x2007000300002.CrossRefPubMedGoogle Scholar
  37. 37.
    DeMaso, D. R., Lauretti, A., Spieth, L., van der Feen, J. R., Jay, K. S., Gauvreau, K., et al. (2004). Psychosocial factors and quality of life in children and adolescents with implantable cardioverter-defibrillators. American Journal of Cardiology, 93(5), 582–587.  https://doi.org/10.1016/j.amjcard.2003.11.022.CrossRefPubMedGoogle Scholar
  38. 38.
    Faul, F., Erdfelder, E., Lang, A. G., & Buchner, A. (2007). G*Power 3: A flexible statistical power analysis program for the social, behavioral, and biomedical sciences. Behavior Research Methods, 39(2), 175–191.  https://doi.org/10.3758/Bf03193146.CrossRefGoogle Scholar
  39. 39.
    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.CrossRefPubMedGoogle Scholar
  40. 40.
    Hovels-Gurich, H. H., Konrad, K., Skorzenski, D., Minkenberg, R., Herpertz-Dahlmann, B., Messmer, B. J., et al. (2007). Long-term behavior and quality of life after corrective cardiac surgery in infancy for tetralogy of Fallot or ventricular septal defect. Pediatric Cardiology, 28(5), 346–354.  https://doi.org/10.1007/s00246-006-0123-z.CrossRefPubMedGoogle Scholar
  41. 41.
    Landolt, M. A., Ystrom, E., Stene-Larsen, K., Holmstrom, H., & Vollrath, M. E. (2014). Exploring causal pathways of child behavior and maternal mental health in families with a child with congenital heart disease: A longitudinal study. Psychological Medicine, 44(16), 3421–3433.  https://doi.org/10.1017/S0033291713002894.CrossRefPubMedGoogle Scholar
  42. 42.
    Eccleston, C., Fisher, E., Law, E., Bartlett, J., & Palermo, T. M. (2015). Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Systematic Reviews.  https://doi.org/10.1002/14651858.cd009660.pub3.CrossRefGoogle Scholar
  43. 43.
    Brosig, C., Yang, K., Hoffmann, R. G., Dasgupta, M., & Mussatto, K. (2014). The role of psychology in a pediatric outpatient cardiology setting: Preliminary results from a new clinical program. Journal of Clinical Psychology in Medical Settings, 21(4), 337–346.  https://doi.org/10.1007/s10880-014-9404-5.CrossRefPubMedGoogle Scholar
  44. 44.
    Doherty, N., & Utens, E. (2016). A family affair. In C. McCusker & F. Casey (Eds.), Congenital heart disease and neurodevelopment. Understanding and improving outcomes (pp. 107–115). Amsterdam: Elsevier.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Helene Werner
    • 1
    • 3
    • 4
    Email author
  • Christian Balmer
    • 2
    • 4
  • Phaedra Lehmann
    • 1
    • 2
    • 4
  1. 1.Department of Psychosomatics and PsychiatryUniversity Children’s HospitalZurichSwitzerland
  2. 2.Department of Cardiology, Pediatric Heart CentreUniversity Children’s HospitalZurichSwitzerland
  3. 3.Department of Child and Adolescent Health Psychology, Institute of PsychologyUniversity of ZurichZurichSwitzerland
  4. 4.University Children’s HospitalChildren’s Research CenterZurichSwitzerland

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