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Biopsychosocial Predictors of Quality of Life Outcomes in Pediatric Congenital Heart Disease

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Abstract

The purpose of this prospective multi-center cross-sectional study was to identify key biopsychosocial factors that impact quality of life (QOL) of youth with congenital heart disease (CHD). Patient-parent pairs were recruited at a regular hospital follow-up visit. Patient- and parent-proxy-reported QOL were assessed using the Pediatric Cardiac Quality of Life Inventory (PCQLI). Wallander’s and Varni’s disability-stress coping model guided factor selection, which included disease factors, educational impairment, psychosocial stress, child psychological and parent/family factors. Measures utilized for these factors included the Pediatric Inventory for Parents, Self-Perception Profile for Children/Adolescents, Child Behavior Checklist, Revised Children’s Manifest Anxiety Scale, Child PTSD Symptom Scale, State-Trait Anxiety Inventory, and Posttraumatic Diagnostic Scale. Ordinary least squares regression was applied to test the theoretical model, with backwards stepwise elimination process. The models accounted for a substantial amount of variance in QOL (Patient-reported PCQLI R 2 = 0.58, p < 0.001; Parent-proxy-reported PCQLI R 2 = 0.60, p < 0.001). For patient-reported QOL, disease factors, educational impairment, poor self-esteem, anxiety, patient posttraumatic stress, and parent posttraumatic stress were associated with lower QOL. For parent-proxy-report QOL, disease factors, educational impairment, greater parental medical stress, poorer child self-esteem, more child internalizing problems, and parent posttraumatic stress were associated with lower QOL. The results highlight that biopsychosocial factors account for over half the variance in QOL in CHD survivors. Assessing and treating psychological issues in the child and the parent may have a significant positive impact on QOL.

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References

  1. Gilboa SM, Salemi JL, Nembhard WN, Fixler DE, Correa A (2010) Mortality resulting from congenital heart disease among children and adults in the United States, 1999 to 2006. Circulation 122(22):2254–2263. doi:10.1161/Circulationaha.110.947002

    Article  PubMed  PubMed Central  Google Scholar 

  2. Marino BS, Cassedy A, Drotar D, Wray J (2016) The impact of neurodevelopmental and psychosocial outcomes on health-related quality of life in survivors of congenital heart disease. J Pediatr 174(174):11–22. doi:10.1016/j.jpeds.2016.03.071

    Article  PubMed  Google Scholar 

  3. 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. Cardiol Young 25(6):1027–1036. doi:10.1017/S1047951115000086

    Article  PubMed  Google Scholar 

  4. Marino BS, Tomlinson RS, Drotar D, Claybon ES, Aguirre A, Ittenbach R, Welkom JS, Helfaer MA, Wernovsky G, Shea JA (2009) Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics 123(4):e708–e715. doi:10.1542/peds.2008-2572

    Article  PubMed  Google Scholar 

  5. 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(1):6. doi:10.1186/1471-2431-9-6

    Article  PubMed  PubMed Central  Google Scholar 

  6. Marino BS, Tomlinson RS, Wernovsky G, Drotar D, Newburger JW, Mahony L, Mussatto K, Tong E, Cohen M, Andersen C, Shera D, Khoury PR, Wray J, Gaynor JW, Helfaer MA, Kazak AE, Shea JA, Pediatric Cardiac Quality of Life Inventory Testing Study Consortium (2010) Validation of the Pediatric Cardiac Quality of Life Inventory. Pediatrics 126(3):498–508. doi:10.1542/peds.2009-2973

    Article  PubMed  PubMed Central  Google Scholar 

  7. Knowles RL, Day T, Wade A, Bull C, Wren C, Dezateux C, UK Collaborative Study of Congenital Heart Defects (2014) Patient-reported quality of life outcomes for children with serious congenital heart defects. Arch Dis Child 99(5):413–419. doi:10.1136/archdischild-2013-305130

    Article  PubMed  PubMed Central  Google Scholar 

  8. Uzark K, Jones K, Slusher J, Limbers CA, Burwinkle TM, Varni JW (2008) Quality of life in children with heart disease as perceived by children and parents. Pediatrics 121(5):e1060–e1067. doi:10.1542/peds.2006-3778

    Article  PubMed  Google Scholar 

  9. Wray J, Franklin R, Brown K, Cassedy A, Marino BS (2013) Testing the Pediatric Cardiac Quality of Life Inventory in the United Kingdom. Acta Paediatr 102(2):e68–e73. doi:10.1111/apa.12074

    Article  PubMed  Google Scholar 

  10. Marino BS, Shera D, Wernovsky G, Tomlinson RS, Aguirre A, Gallagher M, Lee A, Cho CJ, Stern W, Davis L, Tong E, Teitel D, Mussatto K, Ghanayem N, Gleason M, Gaynor JW, Wray J, Helfaer MA, Shea JA (2008) The development of the Pediatric Cardiac Quality of Life Inventory: a quality of life measure for children and adolescents with heart disease. Qual Life Res 17(4):613–626. doi:10.1007/s11136-008-9323-8

    Article  PubMed  Google Scholar 

  11. O’Connor AM, Wray J, Tomlinson RS, Cassedy A, Jacobs JP, Jenkins KJ, Brown KL, Franklin RC, Mahony L, Mussatto K, Newburger JW, Wernovsky G, Ittenbach RF, Drotar D, Marino BS (2016) Impact of surgical complexity on health-related quality of life in congenital heart disease surgical survivors. J Am Heart Assoc 5(7):e001234. doi:10.1161/JAHA.114.001234

    Article  PubMed  PubMed Central  Google Scholar 

  12. Marino B, Cassedy A, Brown K, Cvetkovic M, Costello J, Franklin R, Gaynor JW, Laker S, Levinson K, MacGloin H, Mahony L, McQuillan A, Mussatto K, O’Shea D, Newburger J, Sykes M, Teele S, Wernovsky G, Drotar D, Wray J (2015) The impact of demographic, surgical and intensive care unit factors on long-term quality of life in congenital heart disease surgical survivors. J Am Coll Cardiol 65(10):A544. doi:10.1016/S0735-1097(15)60544-7

    Article  Google Scholar 

  13. Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes M, Gaynor JW, Mussatto KA, Uzark K, Goldberg CS, Johnson WH, Jr., Li J, Smith SE, Bellinger DC, Mahle WT, on behalf of the American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, and Stroke Council. (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. doi:10.1161/CIR.0b013e318265ee8a

  14. Cassedy A, Drotar D, Ittenbach R, Hottinger S, Wray J, Wernovsky G, Newburger JW, Mahony L, Mussatto K, Cohen MI, Marino BS (2013) The impact of socio-economic status on health related quality of life for children and adolescents with heart disease. Health Qual Life Outcomes 11:99. doi:10.1186/1477-7525-11-99

    Article  PubMed  PubMed Central  Google Scholar 

  15. Wallander JL, Varni JW (1998) Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 39(1):29–46. doi:10.1017/S0021963097001741

    Article  CAS  PubMed  Google Scholar 

  16. Mullins LL, Molzon ES, Suorsa KI, Tackett AP, Pai ALH, Chaney JM (2015) Models of resilience: developing psychosocial interventions for parents of children with chronic health conditions. Fam Relat 64(1):176–189. doi:10.1111/fare.12104

    Article  Google Scholar 

  17. Marino BS, Drotar D, Cassedy A, Davis R, Tomlinson RS, Mellion K, Mussatto K, Mahony L, Newburger JW, Tong E, Cohen MI, Helfaer MA, Kazak AE, Wray J, Wernovsky G, Shea JA, Ittenbach R (2011) External validity of the Pediatric Cardiac Quality of Life Inventory. Qual Life Res 20(2):205–214. doi:10.1007/s11136-010-9731-4

    Article  PubMed  Google Scholar 

  18. Wray J, Brown K, Franklin R, Cassedy A, Marino BS (2014) Assessing the generalisability of the Pediatric Cardiac Quality of Life Inventory in the United Kingdom. Cardiol Young 24(2):220–228. doi:10.1017/S1047951113000061

    Article  PubMed  Google Scholar 

  19. Wray J, Franklin R, Brown K, Blyth J, Marino BS (2012) Linguistic validation of a disease-specific quality of life measure for children and teenagers with cardiac disease. Cardiol Young 22(1):13–17. doi:10.1017/S1047951111000722

    Article  PubMed  Google Scholar 

  20. Hobson CJ, Kamen J, Szostek J, Nethercut CM, Tiedmann JW, Wojnarowicz S (1998) Stressful life events: a revision and update of the Social Readjustment Rating Scale. Int J Stress Manag 5(1):1–23. doi:10.1023/A:1022978019315

    Article  Google Scholar 

  21. Streisand R, Braniecki S, Tercyak KP, Kazak AE (2001) Childhood illness-related parenting stress: the Pediatric Inventory for Parents. J Pediatr Psychol 26(3):155–162

    Article  CAS  PubMed  Google Scholar 

  22. Muris P, Meesters C, Fijen P (2003) The Self-Perception Profile for Children: further evidence for its factor structure, reliability, and validity. Pers Indiv Differ 35(8):1791–1802. doi:10.1016/S0191-8869(03)00004-7

    Article  Google Scholar 

  23. Wichstraum L (1995) Harter’s Self-Perception Profile for Adolescents: reliability, validity, and evaluation of the question format. J Pers Assess 65(1):100–116

    Article  Google Scholar 

  24. Achenbach TM (1991) Manual for the Child Behavior Checklist/4-18 and 1991 profile. University of Vermont Burlington, Burlington

    Google Scholar 

  25. Reynolds C, Richmond B (2002) Revised Children’s Manifest Anxiety Scale (RCMAS), 8th edn. Western Psychological Services, Los Angeles

    Google Scholar 

  26. Foa EB, Johnson KM, Feeny NC, Treadwell KR (2001) The Child PTSD Symptom Scale: a preliminary examination of its psychometric properties. J Clin Child Psychol 30(3):376–384. doi:10.1207/S15374424JCCP3003_9

    Article  CAS  PubMed  Google Scholar 

  27. Moos RH, Moos BS (1994) Family Environment Scale manual. Consulting Psychologists Press Inc, Palo Alto

    Google Scholar 

  28. Mccubbin HI, Mccubbin MA, Patterson JM, Cauble AE, Wilson LR, Warwick W (1983) CHIP—Coping Health Inventory for Parents: an assessment of parental coping patterns in the care of the chronically ill child. J Marriage Fam 45(2):359–370. doi:10.2307/351514

    Article  Google Scholar 

  29. Spielberger C, Gorsuch R, Lushene R, Vagg P, Jacobs G (1983) Manual for the State-Trait Anxiety Inventory. Consulting Psychologists Press Inc., Palo Alto

    Google Scholar 

  30. Foa EB, Cashman L, Jaycox L, Perry K (1997) The validation of a self-report measure of posttraumatic stress disorder: the Posttraumatic Diagnostic Scale. Psychol Assess 9(4):445–451. doi:10.1037//1040-3590.9.4.445

    Article  Google Scholar 

  31. Pao M, Bosk A (2011) Anxiety in medically ill children/adolescents. Depress Anxiety 28(1):40–49. doi:10.1002/da.20727

    Article  CAS  PubMed  Google Scholar 

  32. Chavira DA, Drahota A, Garland AF, Roesch S, Garcia M, Stein MB (2014) Feasibility of two modes of treatment delivery for child anxiety in primary care. Behav Res Ther 60:60–66. doi:10.1016/j.brat.2014.06.010

    Article  PubMed  PubMed Central  Google Scholar 

  33. Bursch B, Forgey M (2013) Psychopharmacology for medically ill adolescents. Curr Psychiatry Rep 15(10):395. doi:10.1007/s11920-013-0395-y

    Article  PubMed  Google Scholar 

  34. Kodish I, Rockhill C, Ryan S, Varley C (2011) Pharmacotherapy for anxiety disorders in children and adolescents. Pediatr Clin N Am 58(1):55–72. doi:10.1016/j.pcl.2010.10.002

    Article  Google Scholar 

  35. Connolly SD, Bernstein GA, Work Group on Quality I (2007) Practice parameter for the assessment and treatment of children and adolescents with anxiety disorders. J Am Acad Child Adolesc Psychiatry 46(2):267–283. doi:10.1097/01.chi.0000246070.23695.06

    Article  Google Scholar 

  36. Muller J, Hess J, Hager A (2013) General anxiety of adolescents and adults with congenital heart disease is comparable with that in healthy controls. Int J Cardiol 165(1):142–145. doi:10.1016/j.ijcard.2011.08.005

    Article  PubMed  Google Scholar 

  37. Wang Q, Hay M, Clarke D, Menahem S (2012) The prevalence and predictors of anxiety and depression in adolescents with heart disease. J Pediatr 161(5):943–946. doi:10.1016/j.jpeds.2012.04.010

    Article  PubMed  Google Scholar 

  38. Toren P, Horesh N (2007) Psychiatric morbidity in adolescents operated in childhood for congenital cyanotic heart disease. J Paediatr Child Health 43(10):662–666. doi:10.1111/j.1440-1754.2007.01183.x

    Article  PubMed  Google Scholar 

  39. Cohen M, Mansoor D, Langut H, Lorber A (2007) Quality of life, depressed mood, and self-esteem in adolescents with heart disease. Psychosom Med 69(4):313–318. doi:10.1097/PSY.0b013e318051542c

    Article  PubMed  Google Scholar 

  40. Chen CW, Li CY, Wang JK (2005) Self-concept: comparison between school-aged children with congenital heart disease and normal school-aged children. J Clin Nurs 14(3):394–402. doi:10.1111/j.1365-2702.2004.01068.x

    Article  PubMed  Google Scholar 

  41. Stewart DE, Yuen T (2011) A systematic review of resilience in the physically ill. Psychosomatics 52(3):199–209. doi:10.1016/j.psym.2011.01.036

    Article  PubMed  Google Scholar 

  42. Casey R, Brown RT, Bakeman R (2000) Predicting adjustment in children and adolescents with sickle cell disease: a test of the risk-resistance-adaptation model. Rehabilit Psychol 45(2):155–178. doi:10.1037/0090-5550.45.2.155

    Article  Google Scholar 

  43. Bellinger DC, Newburger JW, Wypij D, Kuban KC, duPlesssis AJ, Rappaport LA (2009) Behaviour at eight years in children with surgically corrected transposition: the Boston Circulatory Arrest Trial. Cardiol Young 19(1):86–97. doi:10.1017/S1047951108003454

    Article  PubMed  Google Scholar 

  44. Brosig C, Yang K, Hoffmann RG, Dasgupta M, Mussatto K (2014) The role of psychology in a pediatric outpatient cardiology setting: preliminary results from a new clinical program. J Clin Psychol Med Sett 21(4):337–346. doi:10.1007/s10880-014-9404-5

    Article  Google Scholar 

  45. Wernovsky G, Lihn SL, Olen MM (2016) Creating a lesion-specific” roadmap” for ambulatory care following surgery for complex congenital cardiac disease. Cardiol Young 27(648):662

    Google Scholar 

  46. Dunbar-Masterson C, Wypij D, Bellinger DC, Rappaport LA, Baker AL, Jonas RA, Newburger JW (2001) General health status of children with D-transposition of the great arteries after the arterial switch operation. Circulation 104(12 Suppl 1):I138–I142

    Article  CAS  PubMed  Google Scholar 

  47. Bellinger DC, Newburger JW (2010) Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease. Prog Pediatr Cardiol 29(2):87–92

    Article  Google Scholar 

  48. Mulkey SB, Swearingen CJ, Melguizo MS, Reeves RN, Rowell JA, Gibson N, Holland G, Bhutta AT, Kaiser JR (2014) Academic proficiency in children after early congenital heart disease surgery. Pediatr Cardiol 35(2):344–352. doi:10.1007/s00246-013-0781-6

    Article  PubMed  Google Scholar 

  49. Razzaghi H, Oster M, Reefhuis J (2015) Long-term outcomes in children with congenital heart disease: National Health Interview Survey. J Pediatr 166(1):119–124. doi:10.1016/j.jpeds.2014.09.006

    Article  PubMed  Google Scholar 

  50. Davis CC, Brown RT, Bakeman R, Campbell R (1998) Psychological adaptation and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioning. J Pediatr Psychol 23(4):219–228

    Article  CAS  PubMed  Google Scholar 

  51. Canfield MA, Honein MA, Yuskiv N, Xing J, Mai CT, Collins JS, Devine O, Petrini J, Ramadhani TA, Hobbs CA, Kirby RS (2006) National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999–2001. Birth Defects Res A Clin Mol Teratol 76(11):747–756. doi:10.1002/bdra.20294

    Article  CAS  PubMed  Google Scholar 

  52. Knowles RL, Ridout D, Crowe S, Bull C, Wray J, Tregay J, Franklin RC, Barron DJ, Cunningham D, Parslow RC, Brown KL (2017) Ethnic and socioeconomic variation in incidence of congenital heart defects. Arch Dis Child 102(6):496–502. doi:10.1136/archdischild-2016-311143

    Article  PubMed  Google Scholar 

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Acknowledgements

We would like to thank the clinical staff and research assistants at Cincinnati Children’s Hospital Medical Center, The Children’s Hospital of Philadelphia, Royal Brompton and Harefield NHS Foundation Trust, Great Ormond Street Hospital NHS Foundation Trust and Birmingham Children’s Hospital who participated in the enrollment of patients, data collection, and coordination for this study. This research was funded by the following: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) K23 Grant (5-K23-HD048637-05), American Heart Association Grant (0465467), Children’s Hospital of Philadelphia Institutional Development Fund, and Cincinnati Children’s Hospital Medical Center (CCHMC) Research Foundation (31-554000-355514).

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Authors and Affiliations

  1. Department of Pediatrics, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA

    Michelle M. Ernst & Carrie Piazza-Waggoner

  2. Department of Pediatrics and Medical Social Sciences, Divisions of Pediatric Cardiology and Critical Care Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Bradley S. Marino

  3. Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Amy Cassedy

  4. Department of Pediatric Cardiology, Royal Brompton and Harefield NHS Foundation Trust, London, UK

    Rodney C. Franklin

  5. Cardiorespiratory Department, Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK

    Katherine Brown & Jo Wray

  6. Division of Behavioral Medicine, Cincinnati Children’s Hospital Medical Center, ML3015, 3333 Burnet Ave, Cincinnati, OH, 45229, USA

    Michelle M. Ernst

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  1. Michelle M. Ernst
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  2. Bradley S. Marino
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Correspondence to Michelle M. Ernst.

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Conflict of interest

Brad Marino is the creator of the Pediatric Cardiac Quality of Life Inventory. The authors declare that they do not have any other conflict of interests.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Appendix

Appendix

See Table 3.

Table 3 Correlations between Pediatric Cardiac Quality of Life Inventory Total Score (PCQLI) outcome variables and demographics and predictor variables
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Ernst, M.M., Marino, B.S., Cassedy, A. et al. Biopsychosocial Predictors of Quality of Life Outcomes in Pediatric Congenital Heart Disease. Pediatr Cardiol 39, 79–88 (2018). https://doi.org/10.1007/s00246-017-1730-6

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