Quality of life in paediatric eosinophilic oesophagitis: What is important to patients?

Child: Care, Health and Development

Volumn 38, Issue 4, 2012, Pages 477-483

  Franciosi, J P ^a   Hommel, K A ^a   Debrosse, C W ^a   Greenberg, A B ^a   Greenler, A J ^a   Abonia, J P ^a   Rothenberg, M E ^a   Varni, J W ^b  

^a CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

^b TEXAS A AND M UNIVERSITY   (United States)

Author keywords

Children; EoE; Eosinophilic oesophagitis; Focus interviews; Patient reported outcomes; Quality of life

Indexed keywords

ADOLESCENT; ARTICLE; ATTITUDE TO HEALTH; CHILD; DAILY LIFE ACTIVITY; EOSINOPHILIC ESOPHAGITIS; FEEDING BEHAVIOR; FEMALE; HUMAN; HUMAN RELATION; INTERPERSONAL COMMUNICATION; MALE; PATHOPHYSIOLOGY; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; PSYCHOMETRY; QUALITY OF LIFE; SCHOOL; TREATMENT OUTCOME; UNITED STATES;

ACTIVITIES OF DAILY LIVING; ADOLESCENT; ATTITUDE TO HEALTH; CHILD; CHILD, PRESCHOOL; COMMUNICATION; EOSINOPHILIC ESOPHAGITIS; FEEDING BEHAVIOR; FEMALE; HUMANS; INTERPERSONAL RELATIONS; MALE; OHIO; PSYCHOMETRICS; QUALITY OF LIFE; SCHOOLS; TREATMENT OUTCOME;

EID: 84861844217     PISSN: 03051862     EISSN: 13652214     Source Type: Journal    
DOI: 10.1111/j.1365-2214.2011.01265.x     Document Type: Article

References (24)

1. Berkes, A., Pataki, I., Kiss, M., Kemeny, C., Kardos, L., Varni, J. W. & Mogyorosy, G. (2010) Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and the Cardiac Module. Health and Quality of Life Outcomes, 8, 14.
2. Furuta, G. T., Liacouras, C. A., Collins, M. H., Gupta, S. K., Justinich, C., Putnam, P. E., Bonis, P., Hassall, E., Straumann, A. & Rothenberg, M. E. (2007) Eosinophilic esophagitis in children and adults: a systematic review and consensus recommendations for diagnosis and treatment. Gastroenterology, 133, 1342-1363.
3. Goldstein, S. L., Graham, N., Warady, B. A., Seikaly, M., Mcdonald, R., Burwinkle, T. M., Limbers, C. A. & Varni, J. W. (2008) Measuring health-related quality of life in children with ESRD: performance of the generic and ESgRD-specific instrument of the Pediatric Quality of Life Inventory (PedsQL). American Journal of Kidney Diseases, 51, 285-297.
4. Goldstein, S. L., Rosburg, N. M., Warady, B. A., Seikaly, M., Mcdonald, R., Limbers, C. & Varni, J. W. (2009) Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL ESRD analysis. Pediatric Nephrology, 24, 1553-1560.
5. Grad, F. P. (2002) The Preamble of the Constitution of the World Health Organization. Bulletin of the World Health Organization, 80, 981-984.
6. Ingerski, L. M., Modi, A. C., Hood, K. K., Pai, A. L., Zeller, M., Piazza-Waggoner, C., Driscoll, K. A., Rothenberg, M. E., Franciosi, J. & Hommel, K. A. (2010) Health-related quality of life across pediatric chronic conditions. The Journal of Pediatrics, 156, 639-644.
7. Kruger, R. A. (1994) Focus Groups: A Practical Guide for Applied Research, 2nd edn. Sage, Thousand Oaks, CA, USA.
8. Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K. & Leidy, N. K. (2004) Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value in Health, 7, 79-92.
9. Morgan, D. L. (ed.) (1993) Successful Focus Groups: Advancing the State of the Art. Sage, Newbury Park, CA, USA.
10. 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.
11. Sudman, S., Bradburn, N. M. & Schwarz, N. (1996) Thinking about Answers: The Application of Cognitive Processes to Survey Methodology. Jossey-Bass, San Francisco, CA, USA.
12. Tong, A., Sainsbury, P. & Craig, J. (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19, 349-357.
13. Varni, J. W. & Limbers, C. A. (2009) The Pediatric Quality of Life Inventory: measuring pediatric health-related quality of life from the perspective of children and their parents. Pediatric Clinics of North America, 56, 843-863.
14. 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.
15. Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K. & Dickinson, P. (2002a) The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer, 94, 2090-2106.
16. Varni, J. W., Seid, M., Smith Knight, T., Burwinkle, T., Brown, J. & Szer, I. S. (2002b) The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis and Rheumatism, 46, 714-725.
17. Varni, J. W., Burwinkle, T. M., Rapoff, M. A., Kamps, J. L. & Olson, N. (2004) The PedsQL in pediatric asthma: reliability and validity of the Pediatric Quality of Life Inventory generic core scales and asthma module. Journal of Behavioral Medicine, 27, 297-318.
18. Varni, J. W., Burwinkle, T. M. & Lane, M. M. (2005a) Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health and Quality of Life Outcomes, 3, 34.
19. Varni, J. W., Burwinkle, T. M. & Seid, M. (2005b) The PedsQL as a pediatric patient-reported outcome: reliability and validity of the PedsQL Measurement Model in 25000 children. Expert Review of Pharmacoeconomics & Outcomes Research, 6, 705-719.
20. Varni, J. W., Burwinkle, T. M., Berrin, S. J., Sherman, S. A., Artavia, K., Malcarne, V. L. & Chambers, H. G. (2006) The PedsQL inpediatric cerebral palsy: reliability, validity, and sensitivity of the Generic Core Scales and Cerebral Palsy Module. Developmental Medicine and Child Neurology, 48, 442-449.
21. Varni, J. W., Limbers, C. A. & Burwinkle, T. M. (2007a) How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 1.
22. Varni, J. W., Limbers, C. A. & Burwinkle, T. M. (2007b) Parent proxy-report of their children's health-related quality of life: an analysis of 13878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 2.
23. Varni, J. W., Limbers, C. A., Burwinkle, T. M., Bryant, W. P. & Wilson, D. P. (2008) The ePedsQL in type 1 and type 2 diabetes: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Internet administration. Diabetes Care, 31, 672-677.
24. Walsh, T. R., Irwin, D. E., Meier, A., Varni, J. W. & Dewalt, D. A. (2008) The use of focus groups in the development of the PROMIS pediatrics item bank. Quality of Life Research, 17, 725-735.