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The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease

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Abstract

Objective

Mortality after surgery for congenital heart disease (CHD) has decreased. Quality of life (QOL) assessment in survivors has become increasingly important. The purpose of this project was to create the Pediatric Cardiac Quality of Life Inventory (PCQLI).

Methods

Items were generated through nominal groups of patients, parents, and providers. The pilot PCQLI was completed by children (age 8–12), adolescents (age 13–18), and their parents at three cardiology clinics. Item reduction was performed through analysis of items, principal components, internal consistency (IC), and patterns of correlation.

Results

A total of 655 patient–parent pairs completed the pilot PCQLI. Principal components identified included: impact of disease (ID); psychosocial impact (PI); and emotional environment (EE). After item reduction ID and PI had excellent IC (ID = 0.88–0.91; PI = 0.78–0.85) and correlated highly with each other (0.81–0.90) and with the total score (TS) (ID = 0.95–0.96; PI = 0.87–0.93). EE was not correlated with ID, PI, or TS and was removed from the final forms. Two-ventricle CHD patients had a higher TS than single-ventricle CHD patients across all forms (P < 0.001).

Conclusion

The PCQLI has patient and parent-proxy forms, has wide age range, and discriminates between CHD subgroups. The ID and PI subscales of the PCQLI have excellent IC and correlate well with each other and the TS.

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Abbreviations

CHAT:

Congenital Heart Adolescent and Teenager Questionnaire

CHOP:

The Children’s Hospital of Philadelphia

CHW:

Children’s Hospital of Wisconsin

HRQOL:

Health-related quality of life

IC:

Internal consistency

PCQLI:

Pediatric Cardiac Quality of Life Inventory

QOL:

Quality of life

UCSF:

University of California San Francisco

References

  1. Mahle, W. T., Spray, T. L., Wernovsky, G., Gaynor, J. W., & Clark, B. J. 3rd. (2000). Survival after reconstructive surgery for hypoplastic left heart syndrome: A 15-year experience from a single institution. Circulation, 102(Suppl 3), 136–141.

    Google Scholar 

  2. Leijala, M. (1993). Advances in pediatric cardiac surgery. Critical Care Medicine, 21(9 Suppl), S327–S329.

    Article  PubMed  CAS  Google Scholar 

  3. Wray, J., & Sensky, T. (2001). Congenital heart disease and cardiac surgery in childhood: Effects on cognitive function and academic ability. Heart, 85, 687–691.

    Article  PubMed  CAS  Google Scholar 

  4. Mahle, W. T., Clancy, R. R., Moss, E., Gerdes, M., Jobes, D. R., & Wernovsky, G. (2000). Neurodevelopmental outcome and lifestyle assessment in school-age and adolescent children with hypoplastic left heart syndrome. Pediatrics, 105, 1082–1089.

    Article  PubMed  CAS  Google Scholar 

  5. Wernovsky, G., Stiles, K. M., Gauvreau, K., Gentles, T. L., DuPlessis, A. J., Bellinger, D. C., Walsh, A. Z., Burnett, J., Jonas, R. A., Mayer, J. E. Jr., & Newburger, J. W. (2000). Cognitive development after the Fontan operation. Circulation, 102, 883–889.

    PubMed  CAS  Google Scholar 

  6. Bellinger, D. C., Wypij, D., DuPlesssis, A. J., Rappaport, L. A., Jonas, R. A., Wernovsky, G., & Newburger, J. W. (2003). Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: The Boston Circulatory Arrest Trial. Journal of Thoracic and Cardiovascular Surgery, 126, 1385–1396.

    Article  PubMed  Google Scholar 

  7. Wypij, D., Newburger, J. W., Rappaport, L. A., DuPlessis, A. J., Jonas, R. A., Wernovsky, G., Lin, M., & Bellinger, D. C. (2003). The effect of duration of deep hypothermic circulatory arrest in infant heart surgery on late neurodevelopment: The Boston Circulatory Arrest Trial. Journal of Thoracic and Cardiovascular Surgery, 126, 1397–1403.

    Article  PubMed  Google Scholar 

  8. Bellinger, D. C., Jonas, R. A., Rappaport, L. A., Wypij, D., Wernovsky, G., Kuban, K. C., Barnes, P. D., Holmes, G. L., Hickey, P. R., Strand, R. D., et al. (1995). Developmental and neurologic status of children after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypass. New England Journal Medicine, 195(332), 549–555.

    Article  Google Scholar 

  9. Driscoll, D. J., & Durongpisitkul, K. (1999). Exercise testing after the Fontan operation. Pediatric Cardiology, 20, 57–59.

    Article  PubMed  CAS  Google Scholar 

  10. Limperopoulos, C., Majnemer, A., Shevell, M. I., Rosenblatt, B., Rohlicek, C., Tchervenkov, C., & Darwish, H. Z. (2001). Functional limitations in young children with congenital heart defects after cardiac surgery. Pediatrics, 108, 1325–1331.

    Article  PubMed  CAS  Google Scholar 

  11. Paridon, S. M., Sullivan, N. M., Schneider, J., & Pinsky, W. W. (1993). Cardiopulmonary performance at rest and exercise after repair of total anomalous pulmonary venous connection. American Journal of Cardiology, 72, 1444–1447.

    Article  PubMed  CAS  Google Scholar 

  12. Mahle, W. T., McBride, M. G., & Paridon, S. M. (2001). Exercise performance after the arterial switch operation for d-transposition of the great arteries. American Journal of Cardiology, 87, 753–758.

    Article  PubMed  CAS  Google Scholar 

  13. Joshi, V. M., Carey, A., Simpson, P., & Paridon, S. M. (1997). Exercise performance following repair of hypoplastic left heart syndrome: A comparison with other types of Fontan patients. Pediatric Cardiology, 18, 357–360.

    Article  PubMed  CAS  Google Scholar 

  14. Mahle, W. T., McBride, M. G., & Paridon, S. M. (2002). Exercise performance in tetralogy of Fallot: the impact of primary complete repair in infancy. Pediatric Cardiology, 23, 224–229.

    Article  PubMed  CAS  Google Scholar 

  15. Wray, J., & Sensky, T. (1998). How does the intervention of cardiac surgery affect the self perception of children with congenital heart disease? Child: Care, Health and Development, 24, 57–72.

    Article  CAS  Google Scholar 

  16. Casey, F. A., Sykes, D. H., Craig, B. G., Power, R., & Mulholland, H. C. (1996). Behavioral adjustment of children with surgically palliated complex congenital heart disease. Journal of Pediatric Psychology, 21, 335–352.

    Article  PubMed  CAS  Google Scholar 

  17. Davis, C. C., Brown, R. T., Bakeman, R., & Campbell, R. (1998). Psychological adaptation and adjustment of mothers of children with congenital heart disease: Stress, coping, and family functioning. Journal of Pediatric Psychology, 23, 219–228.

    Article  PubMed  CAS  Google Scholar 

  18. Moons, P., Van Deyk, K., Budts, W., & De Geest, S. (2004). Caliber of quality of life assessments in congenital heart disease: A plea for more conceptual and methodological rigor. Archives of Pediatrics and Adolescent Medicine, 158, 1062–1069.

    Article  PubMed  Google Scholar 

  19. Varni, J. W. (1998). The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. Journal of Behavioral Medicine, 21, 179–204.

    Article  PubMed  CAS  Google Scholar 

  20. Landgraf, J. M., Abetz, L., & Ware, J. E. (1996). The Child Health Questionnaire (CHQ): A user’s manual (1st ed.). Boston, MA: The Health Institute, New England Medical Center.

    Google Scholar 

  21. Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQLTM. Measurement model for the Pediatric Quality of Life Inventory. Medical Care, 37, 126–139.

    Article  PubMed  CAS  Google Scholar 

  22. Patrick, D. L., & Deyo, R. A. (1989). Generic and disease specific measures in assessing health status and quality of life. Medical Care, 27, S217–S232.

    Article  PubMed  CAS  Google Scholar 

  23. Juniper, E. F., Guyatt, G. H., Feeny, D. H., Ferrie, P. J., Griffith, L. E., & Townsend, N. (1996). Measuring quality of life in the parents of children with asthma. Quality of Life Research, 5, 27–34.

    Article  PubMed  CAS  Google Scholar 

  24. Testa, M. A., & Lenderking, W. R. (1995). Quality of life considerations in AIDS clinical trials. In D. A. Schoenfeld & D. M. Finkelstein (Eds.), AIDS clinical trials (pp. 150–159). New York: Wiley–Liss.

    Google Scholar 

  25. Ingersoll, G. M., & Marrero, D. G. (1990). A modified quality of life measure for youths: Psychometric properties. Diabetes Educator, 17, 114–120.

    Article  Google Scholar 

  26. Hoare, P., & Russell, M. (1995). The quality of life of children with chronic epilepsy and their families: Preliminary findings with a new assessment measure. Developmental Medicine and Child Neurology, 37, 689–696.

    Article  PubMed  CAS  Google Scholar 

  27. Wiklund, I., Wiren, L., Erling, A., Karlberg, J., & Albertsson-Wikland, K. (1994). A new self assessment questionnaire to measure well-being in children, particularly those of short stature. Quality of Life Research, 3, 449–455.

    Article  PubMed  CAS  Google Scholar 

  28. Goodwin, D., Boggs, S. R., & Graham-Pole, J. (1994). Development and validation of the pediatric oncology quality of life scale. Psychological Assessment, 6, 321–328.

    Article  Google Scholar 

  29. Kamphuis, M., Zwinderman, K. H., Vogels, T., Vliegen, H. W., Kamphuis, R. P., Ottenkamp, J., Verloove-Vanhorick, S. P., & Bruil J. (2004). A cardiac specific health-related quality of life module for young adults with congenital heart disease: Development and validation. Quality of Life Research, 13, 735–745.

    Google Scholar 

  30. Uzark, K., Jones, K., Burwinkle, T. M., & Varni, J. W. (2003). The Pediatric Quality of Life Inventory in children with heart disease. Progress in Pediatric Cardiology, 18, 141–148.

    Article  Google Scholar 

  31. Kendall, L., Lewin, R. J. P., Parsons, J. M., Veldtman, G. R., Quirk, J., & Hardman, G. F. (2001). Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending pediatric cardiologic clinics. Cardiology in the Young, 11, 431–438.

    Article  PubMed  CAS  Google Scholar 

  32. Macran, S., Birks, Y., Parsons, J., Sloper, P., Hardman, G., Kind, P., van Doorn, C., Thompson, D., & Lewin, R. (2006). The development of a new measure of quality of life for children with congenital heart disease. Cardiology in the Young, 16, 125–127.

    Article  Google Scholar 

  33. Streiner, D. L., & Norman, G. R. (1995). Health measurement scales (2nd ed.). New York: Oxford University Press.

    Google Scholar 

  34. Greydanus, D. E., & McAnarney, E. R. (1980). The value of Tanner Staging. Journal of Current Adolescent Medicine, 2, 21.

    Google Scholar 

  35. Carney, O., McIntosh, J., & Worth, A. (1996). The use of the Nominal Group Technique in research with community nurses. Journal of Advanced Nursing, 23, 1024–1029.

    Article  PubMed  CAS  Google Scholar 

  36. Marx, R. G., Bombardier, C., Hodd-Johnson, S., & Wright, J. G. (1999). Clinimetric and psychometric strategies for development of a health measurement scale. Journal of Clinical Epidemiology, 52, 105–111.

    Article  PubMed  CAS  Google Scholar 

  37. Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York: McGraw–Hill.

    Google Scholar 

  38. Chavance, M. (2004). Handling missing items in quality of life studies. Communications in Statistics. Theory and Methods, 33, 1371–1383.

    Article  Google Scholar 

  39. Lewis, J. A. (1999). International conference on harmonization tripartite guideline: Statistical principles for clinical trials. Statistics in Medicine, 18, 1905–1942.

    Article  Google Scholar 

  40. Schumacker, R. E. (1996). Disattenuating correlation coefficients. Rasch Measurement Transactions, 10, 479.

    Google Scholar 

  41. Chang, P., & Yeh, C. (2005). Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psycho-Oncology, 14, 125–134.

    Article  PubMed  Google Scholar 

  42. Theunissen, N. C. M., Vogels, T. G. C., Koopman, H. M., Verrips, G. H. W., Zwinderman, K. A. H., Verloove-Vanhorick, S. P., & Wit, J. M. (1998). The Proxy-Problem: Child report versus parent report in health-related quality of life research. Quality of Life Research, 7, 387–397.

    Article  PubMed  CAS  Google Scholar 

  43. Waters, E., Stewart-Brown, S., & Fitzpatrick, R. (2003). Agreement between adolescent self-report and parent reports of health and well-being: Results of an epidemiological study. Child: Care, Health & Development, 29, 501–509.

    Article  CAS  Google Scholar 

  44. Marino, B. S. (2002). Outcomes after the Fontan procedure. Current Opinion in Pediatrics, 14, 620–626.

    Article  PubMed  Google Scholar 

  45. McCrindle, B. W., Williams, R. V., Mitchell, P. D., Hsu, D. T., Paridon, S. M., Atz, A. M., Li, J. S., & Newburger, J. W. (2006). Relationship of patient and medical characteristics to health status in children and adolescents after the Fontan procedure. Circulation, 113, 1123–1129.

    Article  PubMed  Google Scholar 

  46. Williams, D. L., Gelijns, A. C., Moskowitz, A. J., Weinberg, A. D., Ng, J. H., Crawford, E., Hayes, C. J., Quaegebeur, J. M. (2000). Hypoplastic left heart syndrome: Valuing survival. The Journal of Thoracic and Cardiovascular Surgery, 119, 720–731.

    Article  PubMed  CAS  Google Scholar 

  47. Culbert, E. L., Ashburn, D. A., Cullen-Dean, G., Joseph, J. A., Williams, W. G., Blackstone, E. H., & McCrindle, B. W. (2003). The congenital heart surgeons society. Quality of life in children after repair of transposition of the great arteries. Circulation, 108, 857–862.

    Article  PubMed  Google Scholar 

  48. Harter, S. (1985). Manual for the self perception profile for children. Denver, CO: University of Denver.

    Google Scholar 

  49. Harter, S. (1985). Manual for the self perception profile for adolescents. Denver, CO: University of Denver.

    Google Scholar 

  50. Jacobson, A. M., & Fried, K. (1998). Conceptual issues in developing quality of life assessments for children: Illustrations from studies of insulin-dependent diabetes mellitus. In Drotar, D. (Ed.), Measuring health-related quality of life in children and adolescents: Implications for research and practice. Mahwah, NJ: Lawrence Erlbaum Associates.

    Google Scholar 

  51. Sabaz, M., Cairns, D. R., Lawson, J. A., Nheu, N., Bleasel, A. F., & Bye, A. M. E. (2000). Validation of a new quality of life measure for children with epilepsy. Epilepsia, 41, 765–774.

    Article  PubMed  CAS  Google Scholar 

  52. Waters, E., Stewart-Brown, S., & Fitzpatrick, R. (2003). Agreement between adolescents self-report and parent reports of health and well-being: Results of an epidemiological study. Child: Care, Health and Development, 29, 501–509.

    Article  CAS  Google Scholar 

  53. Britto, M. T., Kotegal, U. R., Chenier, T., Tsevat, J., Atherton, H. D., & Wilmott, R. W. (2004). Differences between adolescents’ and parents’ reports of health-related quality of life in cystic fibrosis. Pediatric Pulmonology, 37, 165–171.

    Article  PubMed  Google Scholar 

  54. Boulware, L. E., Cooper, L. A., Ratner, L. E., LaVeist, T. A., & Powe, N. R. (2003). Race and trust in the health care system. Public Health Reports, 118, 358–365.

    PubMed  Google Scholar 

  55. Corbie-Smith, G., Thomas, S. B., & St. George, D. M. M. (2002). Distrust, race, and research. Archives of Internal Medicine, 162, 2458–2463.

    Article  PubMed  Google Scholar 

  56. Corbie-Smith, G., Thomas, S. B., Williams, M. V., & Moody-Ayers, S. (1999). Attitudes and beliefs of African Americans towards participation in medical research. Journal of General Internal Medicine, 14, 537–546.

    Article  PubMed  CAS  Google Scholar 

  57. Shavers, V. L., Lynch, C. F., & Burmeister, L. F. (2002). Racial differences in factors that influence the willingness to participate in medical research studies. Annals of Epidemiology, 12, 248–256.

    Article  PubMed  Google Scholar 

  58. McHorney, C. A., Ware, J. E., & Raczek, A. E. (1993). The MOS 36-item short form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Medical Care, 31, 247–263.

    Article  PubMed  CAS  Google Scholar 

  59. Bender, B. G., Annett, R. D., Ikle, D., DuHamel, T. R., Rand, C., & Strunk, R. C. CAMP Research Group (2000). Relationship between disease and psychological adaptation in children and the childhood asthma management program and their families. Archives of Pediatrics and Adolescent Medicine, 154, 706–713.

    PubMed  CAS  Google Scholar 

  60. Cotton, S., Zebracki, K., Rosenthal, S., Tsevat, J., & Drotar, D. (2006). Religion/spirituality and adolescent health outcomes: A review. Journal of Adolescent Health, 38, 472–480.

    Article  PubMed  Google Scholar 

  61. Kovacs, A. H., Sears, S. F., & Saidi, A. S. (2005). Biopsychosocial experiences of adults with congenital heart disease: Review of the literature. American Heart Journal, 150, 193–201.

    Article  PubMed  Google Scholar 

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Acknowledgement

We would like to acknowledge Dr Dennis Drotar, PhD for his constructive feedback and assistance with final manuscript preparation.

Author information

Authors and Affiliations

  1. Department of Pediatrics, Divisions of Cardiology and Critical Care Medicine, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, MLC 2003, 3333 Burnet Avenue, Cincinnati, OH, 45229, USA

    Bradley S. Marino

  2. Department of Anesthesiology and Critical Care, Division of Critical Care Medicine, The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    Bradley S. Marino, Ryan S. Tomlinson, Angela Lee, Catherine J. Cho, Whitney Stern, Lauren Davis & Mark A. Helfaer

  3. Department of Pediatrics, Division of Cardiology, The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    Bradley S. Marino, Gil Wernovsky, Maureen Gallagher & Marie Gleason

  4. Department of Pediatrics, Division of Biostatistics, The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    David Shera

  5. Department of Medicine, Division of General Internal Medicine, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    Abigail Aguirre & Judy A. Shea

  6. Department of Pediatrics, Division of Cardiology, University of California San Francisco Children’s Hospital, University of California, San Francisco, San Francisco, CA, USA

    Elizabeth Tong & David Teitel

  7. Herma Heart Center, Children’s Hospital of Wisconsin, Milwaukee, WI, USA

    Kathleen Mussatto & Nancy Ghanayem

  8. Department of Pediatrics, Division of Critical Care Medicine, Children’s Hospital of Wisconsin, Medical College of Wisconsin, Milwaukee, WI, USA

    Nancy Ghanayem

  9. Department of Surgery, Division of Cardiothoracic Surgery, The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    J. William Gaynor

  10. Royal Brompton and Harefield NHS Trust, Harefield Hospital, Harefield, Middlesex, UB9 6JH, UK

    Jo Wray

  11. Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London, WC1N 3JH, UK

    Jo Wray

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  1. Bradley S. Marino
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  2. David Shera
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  3. Gil Wernovsky
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  10. Lauren Davis
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Corresponding author

Correspondence to Bradley S. Marino.

Additional information

Supported by the Critical Care Medicine Endowed Chair at The Children’s Hospital of Philadelphia.

Abstract presented at the 54th Scientific Session of the American College of Cardiology, Orlando, Florida, 2005.

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Marino, B.S., Shera, D., Wernovsky, G. et al. 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, 613–626 (2008). https://doi.org/10.1007/s11136-008-9323-8

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  • DOI: https://doi.org/10.1007/s11136-008-9323-8

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