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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.
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).
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.
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).
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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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.
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
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. PubMedCrossRef
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. PubMedCrossRef
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. CrossRef
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. CrossRef
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.
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.
Ingersoll, G. M., & Marrero, D. G. (1990). A modified quality of life measure for youths: Psychometric properties. Diabetes Educator, 17, 114–120. CrossRef
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. CrossRef
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.
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. CrossRef
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. CrossRef
Streiner, D. L., & Norman, G. R. (1995). Health measurement scales (2nd ed.). New York: Oxford University Press.
Greydanus, D. E., & McAnarney, E. R. (1980). The value of Tanner Staging. Journal of Current Adolescent Medicine, 2, 21.
Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York: McGraw–Hill.
Chavance, M. (2004). Handling missing items in quality of life studies. Communications in Statistics. Theory and Methods, 33, 1371–1383. CrossRef
Lewis, J. A. (1999). International conference on harmonization tripartite guideline: Statistical principles for clinical trials. Statistics in Medicine, 18, 1905–1942. CrossRef
Schumacker, R. E. (1996). Disattenuating correlation coefficients. Rasch Measurement Transactions, 10, 479.
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. CrossRef
Harter, S. (1985). Manual for the self perception profile for children. Denver, CO: University of Denver.
Harter, S. (1985). Manual for the self perception profile for adolescents. Denver, CO: University of Denver.
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.
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. CrossRef
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
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
- The development of the pediatric cardiac quality of life inventory: a quality of life measure for children and adolescents with heart disease
Bradley S. Marino
Ryan S. Tomlinson
Catherine J. Cho
J. William Gaynor
Mark A. Helfaer
Judy A. Shea
- Springer Netherlands