Skip to main content
Erschienen in: Quality of Life Research 2/2011

01.03.2011

External validity of the pediatric cardiac quality of life inventory

verfasst von: Bradley S. Marino, Dennis Drotar, Amy Cassedy, Richard Davis, Ryan S. Tomlinson, Katelyn Mellion, Kathleen Mussatto, Lynn Mahony, Jane W. Newburger, Elizabeth Tong, Mitchell I. Cohen, Mark A. Helfaer, Anne E. Kazak, Jo Wray, Gil Wernovsky, Judy A. Shea, Richard Ittenbach

Erschienen in: Quality of Life Research | Ausgabe 2/2011

Einloggen, um Zugang zu erhalten

Abstract

Purpose

The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific, health-related quality of life (HRQOL) measure for pediatric heart disease (HD). The purpose of this study was to demonstrate the external validity of PCQLI scores.

Methods

The PCQLI development site (Development sample) and six geographically diverse centers in the United States (Composite sample) recruited pediatric patients with acquired or congenital HD. Item response option variability, scores [Total (TS); Disease Impact (DI) and Psychosocial Impact (PI) subscales], patterns of correlation, and internal consistency were compared between samples.

Results

A total of 3,128 patients and parent participants (1,113 Development; 2,015 Composite) were analyzed. Response option variability patterns of all items in both samples were acceptable. Inter-sample score comparisons revealed no differences. Median item–total (Development, 0.57; Composite, 0.59) and item–subscale (Development, DI 0.58, PI 0.59; Composite, DI 0.58, PI 0.56) correlations were moderate. Subscale–subscale (0.79 for both samples) and subscale—total (Development, DI 0.95, PI 0.95; Composite, DI 0.95, PI 0.94) correlations and internal consistency (Development, TS 0.93, DI 0.90, PI 0.84; Composite, TS 0.93, DI 0.89, PI 0.85) were high in both samples.

Conclusion

PCQLI scores are externally valid across the US pediatric HD population and may be used for multi-center HRQOL studies.
Literatur
1.
Zurück zum Zitat Mahle, W. T., Spray, T. L., Wernovsky, G., Gaynor, J. W., & Clark, B. J., III (2000). Survival after reconstructive surgery for hypoplastic left heart syndrome: A 15-year experience from a single institution. Circulation, 102, III136–III141.PubMed Mahle, W. T., Spray, T. L., Wernovsky, G., Gaynor, J. W., & Clark, B. J., III (2000). Survival after reconstructive surgery for hypoplastic left heart syndrome: A 15-year experience from a single institution. Circulation, 102, III136–III141.PubMed
2.
Zurück zum Zitat Leijala, M. (1993). Advances in pediatric cardiac surgery. Critical Care Medicine, 21, S327–S329.CrossRefPubMed Leijala, M. (1993). Advances in pediatric cardiac surgery. Critical Care Medicine, 21, S327–S329.CrossRefPubMed
3.
Zurück zum Zitat Tajimi, M., Uehara, R., Watanabe, M., Oki, I., Ojima, T., & Nakumura, Y. (2003). Birth cohort effect of the mortality rate from congenital heart disease in Japan. Journal of Epidemiology, 13, 274–277.PubMed Tajimi, M., Uehara, R., Watanabe, M., Oki, I., Ojima, T., & Nakumura, Y. (2003). Birth cohort effect of the mortality rate from congenital heart disease in Japan. Journal of Epidemiology, 13, 274–277.PubMed
4.
Zurück zum Zitat Tweddell, J. S., Hoffman, G. M., Mussatto, K. A., et al. (2002). Improved survival of patients undergoing palliation of hypoplastic left heart syndrome: Lessons learned from 115 consecutive patients. Circulation, 106, I82–I89.PubMed Tweddell, J. S., Hoffman, G. M., Mussatto, K. A., et al. (2002). Improved survival of patients undergoing palliation of hypoplastic left heart syndrome: Lessons learned from 115 consecutive patients. Circulation, 106, I82–I89.PubMed
5.
Zurück zum Zitat 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 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
6.
Zurück zum Zitat 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.CrossRefPubMed 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.CrossRefPubMed
7.
Zurück zum Zitat 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.CrossRefPubMed 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.CrossRefPubMed
8.
Zurück zum Zitat Mahle, W. T., Clancy, R. R., Moss, E. M., Gerdes, M., Jobes, D. R., & Wernovsky, G. (2000). Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics, 105, 1082–1089.CrossRefPubMed Mahle, W. T., Clancy, R. R., Moss, E. M., Gerdes, M., Jobes, D. R., & Wernovsky, G. (2000). Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics, 105, 1082–1089.CrossRefPubMed
9.
Zurück zum Zitat Wernovsky, G., Stiles, K. M., Gauvreau, K., et al. (2000). Cognitive development after the Fontan operation. Circulation, 102, 883–889.PubMed Wernovsky, G., Stiles, K. M., Gauvreau, K., et al. (2000). Cognitive development after the Fontan operation. Circulation, 102, 883–889.PubMed
10.
Zurück zum Zitat Bellinger, D. C., Wypij, D., duPlessis, A. J., et al. (2003). Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: The Boston Circulatory Arrest Trial. Journal of Thoracic Cardiovascular Surgery, 126, 1385–1396.CrossRef Bellinger, D. C., Wypij, D., duPlessis, A. J., et al. (2003). Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: The Boston Circulatory Arrest Trial. Journal of Thoracic Cardiovascular Surgery, 126, 1385–1396.CrossRef
11.
Zurück zum Zitat 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.CrossRefPubMed 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.CrossRefPubMed
12.
Zurück zum Zitat Limperopoulos, C., Majnemer, A., Shevell, M. I., et al. (2001). Functional limitations in young children with congenital heart defects after cardiac surgery. Pediatrics, 108, 1325–1331.CrossRefPubMed Limperopoulos, C., Majnemer, A., Shevell, M. I., et al. (2001). Functional limitations in young children with congenital heart defects after cardiac surgery. Pediatrics, 108, 1325–1331.CrossRefPubMed
13.
Zurück zum Zitat 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.CrossRefPubMed 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.CrossRefPubMed
14.
Zurück zum Zitat Drotar, D. (1998). Measuring health-related quality of life in children and adolescents. Mahwah, NJ: Lawrence Erlbaum Associates. Drotar, D. (1998). Measuring health-related quality of life in children and adolescents. Mahwah, NJ: Lawrence Erlbaum Associates.
15.
Zurück zum Zitat Landgraf, J. M., Abezt, L., Ware, J. E., & The Child Health Questionnaire (CHQ). (1996). A user’s manual. The Health Institute. Boston: New England Medical Center. Landgraf, J. M., Abezt, L., Ware, J. E., & The Child Health Questionnaire (CHQ). (1996). A user’s manual. The Health Institute. Boston: New England Medical Center.
16.
Zurück zum Zitat Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139.CrossRefPubMed Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139.CrossRefPubMed
17.
Zurück zum Zitat 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.CrossRefPubMed 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.CrossRefPubMed
18.
Zurück zum Zitat Juniper, E. F., Guyatt, G. H., Feeny, D. H., Ferrie, P. J., Griffith, L. E., & Townsend, M. (1996). Measuring quality of life in the parents of children with asthma. Quality of Life Research, 5, 27–34.CrossRefPubMed Juniper, E. F., Guyatt, G. H., Feeny, D. H., Ferrie, P. J., Griffith, L. E., & Townsend, M. (1996). Measuring quality of life in the parents of children with asthma. Quality of Life Research, 5, 27–34.CrossRefPubMed
19.
Zurück zum Zitat Testa, M., & Lenderking, W. R. (1995). Quality of life considerations in AIDS clinical trials. In D. A. Schoenfeld & D. M. Finkelstein (Eds.), AIDS clinical trials. New York: Wiley–Liss. Testa, M., & Lenderking, W. R. (1995). Quality of life considerations in AIDS clinical trials. In D. A. Schoenfeld & D. M. Finkelstein (Eds.), AIDS clinical trials. New York: Wiley–Liss.
20.
Zurück zum Zitat Ingersoll, G. M., & Marrero, D. G. (1991). A modified quality-of-life measure for youths: Psychometric properties. Diabetes Educator, 17, 114–118.CrossRefPubMed Ingersoll, G. M., & Marrero, D. G. (1991). A modified quality-of-life measure for youths: Psychometric properties. Diabetes Educator, 17, 114–118.CrossRefPubMed
21.
Zurück zum Zitat 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.CrossRefPubMed 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.CrossRefPubMed
22.
Zurück zum Zitat 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.CrossRefPubMed 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.CrossRefPubMed
23.
Zurück zum Zitat 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 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
24.
Zurück zum Zitat Koot, H. M., & Wallander, J. L. (2001). Quality of life in child, adolescent illness: Concepts, methods and findings. New York, NY: Brunner-Routledge. Koot, H. M., & Wallander, J. L. (2001). Quality of life in child, adolescent illness: Concepts, methods and findings. New York, NY: Brunner-Routledge.
25.
Zurück zum Zitat Messick, S. (1995). Validity of psychological assessment: Validation of inferences from persons’ responses and performances as scientific inquiry into score meaning. American Psychologist, 50, 741–749.CrossRef Messick, S. (1995). Validity of psychological assessment: Validation of inferences from persons’ responses and performances as scientific inquiry into score meaning. American Psychologist, 50, 741–749.CrossRef
26.
Zurück zum Zitat Clark, L. A., & Watson, D. (1995). Constructing validity: Basic issues in objective scale development. Psychological Assessment, 7, 309–319.CrossRef Clark, L. A., & Watson, D. (1995). Constructing validity: Basic issues in objective scale development. Psychological Assessment, 7, 309–319.CrossRef
27.
Zurück zum Zitat Streiner, D. L., & Norman, G. R. (1995). Health measurement scales. New York: Oxford University Press. Streiner, D. L., & Norman, G. R. (1995). Health measurement scales. New York: Oxford University Press.
28.
Zurück zum Zitat (2002) Assessing health status and quality-of-life instruments: Attributes and review criteria. Qual of Life Research 11, 193–205. (2002) Assessing health status and quality-of-life instruments: Attributes and review criteria. Qual of Life Research 11, 193–205.
29.
Zurück zum Zitat Thorndike, R. M., & Thorndike-Christ, T. (2010). Measurement and evaluation in psychology and education. Boston, MA: Pearson. Thorndike, R. M., & Thorndike-Christ, T. (2010). Measurement and evaluation in psychology and education. Boston, MA: Pearson.
30.
Zurück zum Zitat Ware, J. E., Jr, Kosinski, M., Gandek, B., et al. (1998). The factor structure of the SF-36 Health Survey in 10 countries: Results from the IQOLA Project. International quality of life assessment. Journal of Clinical Epidemiology, 51, 1159–1165.CrossRefPubMed Ware, J. E., Jr, Kosinski, M., Gandek, B., et al. (1998). The factor structure of the SF-36 Health Survey in 10 countries: Results from the IQOLA Project. International quality of life assessment. Journal of Clinical Epidemiology, 51, 1159–1165.CrossRefPubMed
31.
Zurück zum Zitat Waters, E., Salmon, L., Wake, M., Hesketh, K., & Wright, M. (2000). The Child Health Questionnaire in Australia: Reliability, validity and population means. Australian and New Zealand Journal of Public Health, 24, 207–210.CrossRefPubMed Waters, E., Salmon, L., Wake, M., Hesketh, K., & Wright, M. (2000). The Child Health Questionnaire in Australia: Reliability, validity and population means. Australian and New Zealand Journal of Public Health, 24, 207–210.CrossRefPubMed
32.
Zurück zum Zitat Manocchia, M., Bayliss, M. S., Connor, J., Keller, S. D., Shiely, J. C., & Tasai, C. (1998). SF-36 Health survey annotated bibliography: Second Edition (1988–1996). Boston, MA: The Health Assessment Lab, New England Medical Center. Manocchia, M., Bayliss, M. S., Connor, J., Keller, S. D., Shiely, J. C., & Tasai, C. (1998). SF-36 Health survey annotated bibliography: Second Edition (1988–1996). Boston, MA: The Health Assessment Lab, New England Medical Center.
33.
Zurück zum Zitat Ware, J. E., Snow, K. K., Kosinski, M., Gandek, B. (1993). SF-36 health survey manual and interpretation guide. New England Medical Center, The Health Institute, Boston, MA. Ware, J. E., Snow, K. K., Kosinski, M., Gandek, B. (1993). SF-36 health survey manual and interpretation guide. New England Medical Center, The Health Institute, Boston, MA.
34.
Zurück zum Zitat Ware, J. E., Kosinski, M., & Keller, S. D. (1994). SF-36 physical, mental health summary scales: A user’s manual. Boston, MA: The Health Institute. Ware, J. E., Kosinski, M., & Keller, S. D. (1994). SF-36 physical, mental health summary scales: A user’s manual. Boston, MA: The Health Institute.
35.
Zurück zum Zitat Apolone, G., & Mosconi, P. (1998). The Italian SF-36 health survey: Translation, validation and norming. Journal of Clinical Epidemiology, 51, 1025–1036.CrossRefPubMed Apolone, G., & Mosconi, P. (1998). The Italian SF-36 health survey: Translation, validation and norming. Journal of Clinical Epidemiology, 51, 1025–1036.CrossRefPubMed
36.
Zurück zum Zitat Marino, B. S., Shera, D., Wernovsky, G. et al. (2008). The development of the pediatric cardiac quality of life inventory: A quality of life measure for children and adolescents with heart disease. Quality of Life Research. Marino, B. S., Shera, D., Wernovsky, G. et al. (2008). The development of the pediatric cardiac quality of life inventory: A quality of life measure for children and adolescents with heart disease. Quality of Life Research.
37.
Zurück zum Zitat Marino, B. S., Hottinger, S., Ittenbach, R., Uzark, K., & Drotar, D. (2010). Evaluation of quality of life in patients with congenital or acquired heart disease. Manuscript in Preparation Invited Review for Progress in Pediatric Cardiology Targeted for March 2010 Submission. Marino, B. S., Hottinger, S., Ittenbach, R., Uzark, K., & Drotar, D. (2010). Evaluation of quality of life in patients with congenital or acquired heart disease. Manuscript in Preparation Invited Review for Progress in Pediatric Cardiology Targeted for March 2010 Submission.
38.
Zurück zum Zitat Pols, H. (2007). August Hollingshead and Frederick Redlich: Poverty, socioeconomic status, and mental illness. American Journal of Public Health, 97, 1755.CrossRefPubMed Pols, H. (2007). August Hollingshead and Frederick Redlich: Poverty, socioeconomic status, and mental illness. American Journal of Public Health, 97, 1755.CrossRefPubMed
39.
Zurück zum Zitat Clancy, R. R., McGaurn, S. A., Wernovsky, G., et al. (2000). Preoperative risk-of-death prediction model in heart surgery with deep hypothermic circulatory arrest in the neonate. Journal of Thoracic Cardiovascular Surgery, 119, 347–357.CrossRef Clancy, R. R., McGaurn, S. A., Wernovsky, G., et al. (2000). Preoperative risk-of-death prediction model in heart surgery with deep hypothermic circulatory arrest in the neonate. Journal of Thoracic Cardiovascular Surgery, 119, 347–357.CrossRef
40.
Zurück zum Zitat Nunnally, J. C. (1978). Psychometric theory. New York: McGraw-Hill. Nunnally, J. C. (1978). Psychometric theory. New York: McGraw-Hill.
41.
Zurück zum Zitat Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159–174.CrossRefPubMed Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159–174.CrossRefPubMed
42.
Zurück zum Zitat 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, 141–149.CrossRef 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, 141–149.CrossRef
43.
Zurück zum Zitat Kendall, L., Lewin, R. J., Parsons, J. M., Veldtman, G. R., Quirk, J., & Hardman, G. E. (2001). Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending paediatric cardiologic clinics. Cardiology in the Young, 11, 431–438.CrossRefPubMed Kendall, L., Lewin, R. J., Parsons, J. M., Veldtman, G. R., Quirk, J., & Hardman, G. E. (2001). Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending paediatric cardiologic clinics. Cardiology in the Young, 11, 431–438.CrossRefPubMed
44.
Zurück zum Zitat Macran, S., Birks, Y., Parsons, J., et al. (2006). The development of a new measure of quality of life for children with congenital cardiac disease. Cardiology in the Young, 16, 165–172.CrossRefPubMed Macran, S., Birks, Y., Parsons, J., et al. (2006). The development of a new measure of quality of life for children with congenital cardiac disease. Cardiology in the Young, 16, 165–172.CrossRefPubMed
45.
Zurück zum Zitat Marino, B.S., Tomlinson, R., Wernovsky, G. et al. (2010). Evaluation of health-related quality of life in children and adolescents with congenital and acquired heart disease: Validation of the pediatric cardiac quality of life inventory. Submitted and under review for Pediatrics Targeted for 2009–2010 Publication. Marino, B.S., Tomlinson, R., Wernovsky, G. et al. (2010). Evaluation of health-related quality of life in children and adolescents with congenital and acquired heart disease: Validation of the pediatric cardiac quality of life inventory. Submitted and under review for Pediatrics Targeted for 2009–2010 Publication.
Metadaten
Titel
External validity of the pediatric cardiac quality of life inventory
verfasst von
Bradley S. Marino
Dennis Drotar
Amy Cassedy
Richard Davis
Ryan S. Tomlinson
Katelyn Mellion
Kathleen Mussatto
Lynn Mahony
Jane W. Newburger
Elizabeth Tong
Mitchell I. Cohen
Mark A. Helfaer
Anne E. Kazak
Jo Wray
Gil Wernovsky
Judy A. Shea
Richard Ittenbach
Publikationsdatum
01.03.2011
Verlag
Springer Netherlands
Erschienen in
Quality of Life Research / Ausgabe 2/2011
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-010-9731-4

Weitere Artikel der Ausgabe 2/2011

Quality of Life Research 2/2011 Zur Ausgabe