Ambulatory Pediatrics
Volume 4, Issue 4 , Pages 358-364 , July 2004

Validating Measures of Pediatric Health Status, Functional Status, and Health-Related Quality of Life: Key Methodological Challenges and Strategies

  • Dennis Drotar, PhD

      Affiliations

    • Corresponding Author InformationAddress correspondence to Dennis Drotar, PhD, Department of Pediatrics, Rainbow Babies and Children's Hospital, 11100 Euclid Avenue, Cleveland, OH 44106

Received 9 July 2003 ,Accepted 12 December 2003.

REFERENCES 

  1. In: Drotar D editors. Measuring Health Related Quality of Life in Children and Adolescents: Implications for Research and Practice . Mahwah, NJ: Lawrence Erlbaum Associates; 1998;
  2. Eiser CE , Morse R . Quality of life measures in chronic disease of childhood . Health Tech Ass . 2001;5:1–158
  3. Eiser CE , Morse R . The measurement of quality of life in children: past and future perspectives . J Devel Behav Pediatr . 2001;6:393–406
  4. Landgraf JM , Abetz LN . Functional status and well being of children representing three cultural groups: initial self-reports using the CHQ-CF87 . Psychol Health . 1997;12:839–854
  5. Varni JW , Seid M , Kurti PS . The Peds QL 4.0 Reliability and Validity of Pediatric Quality of Life Inventory Version 5l0 Generic Core Scores in healthy and patient populations . Med Care . 2001;39:800–812
  6. Drotar D , Levi R , Palermo TM , et al.   Recommendations for research concerning the measurement and application of pediatric health related quality of life . In: Drotar D editors. Measuring Health Related Quality of Life in Children and Adolescents: Implications for Research and Practice . Mahwah, NJ: Lawrence Erlbaum Associates; 1998;p. 343–351
  7. Harding L . Children's quality of life assessments: a review of generic and health-related quality of life measures completed by children and adolescents . Clin Psychol Psychother . 2001;8:79–96
  8. Palermo TM , Childs G , Burgess ES , et al.   Functional limitations of school-aged children seen in primary care . Child Health Care & Dev . 2002;28:379–389
  9. Pal DK . Quality of life assessment in children: a review of conceptual and methodological issues. I multidimensional health status measures . J Epid Comm Health . 1996;50:391–396
  10. Smith KW , Avis NE , Assman SF . Quality of life and health status in quality of life research: a meta-analysis . Qual of Life Res . 1999;8:447–459
  11. Wilson IB , Cleary PD . Linking clinical variables with health-related quality of life . JAMA . 1995;223:59–65
  12. Stein REK , Gortmaker SK , Perrin EL , et al.   Severity of illness: concepts and measurement . Lancet . 1987;2:506–509
  13. Scientific Advisory Committee of the Medical Outcomes Trust. . Assessing health status and quality of life instruments: attributes and review criteria . Qual Life Res . 2002;11:193–205
  14. Feyers PM , Hand DC , Bjord AL , et al.   Causal indicators in quality of life research . Qual Life Res . 1997;6:393–406
  15. Epstein DS . Responsiveness in quality of life assessment: nomenclature, determinants, and clinical applications . Med Care . 2000;38(suppl 2):91–94
  16. Levi R , Drotar D . Critical issues and needs in health related quality of life assessment of children and adolescents with chronic health conditions . In: Drotar D editors. Measuring Health Related Quality of Life in Children and Adolescents: Implications for Research and Practice . Mahwah, NJ: Lawrence Erlbaum Associates; 2000;p. 3–25
  17. In: Sprangers MAG , Schwartz LE editor. Integrating response shift into health-related quality of life research. A theoretical model In: Adaptation to Changing Health Response Shift in Quality of Life Research . Washington, DC: American Psychological Association; 2000;p. 11–23
  18. Wilson IB . Clinical understanding and clinical implications of response shift . Soc Sci Med . 1999;48:1577–1588
  19. Brossart DF , Clay DL , Wilson VL . Methodological and statistical considerations for threats to internal validity in pediatric outcome in response shift in self-report outcomes . J Ped Psychol . 2002;27:97–107
  20. Timmerman AA , Antenosis LJC , Meesters CHG . Response shift bias and parent reported quality of life in children with otitis media . Arch Otolaryngol Head Neck Surg . 2003;129:987–991
  21. Eiser MC , Morse R . Can parents rate their child's health related quality of life: results of a systematic review . Qual Life Res . 2001;10:347–357
  22. Holmbeck GN , Li ST , Schurman TV , et al.   Collecting and managing multisource and multimethod data in studies of pediatric populations . J Ped Psychol . 2002;27:5–18
  23. Drotar D , Agle DP , Eckl CL , et al.   Impact of the repressive personality style on the measurement of psychological distress in children and adolescents with chronic illness: an example from hemophilia . J Pediatr Psychol . 1996;21:283–293
  24. Bollen KA . Structural equations with content variables . New York, NY: Wiley; 1989;
  25. Hays RD , Stewart AL . The structure of self reported health in chronic disease patients . Psychol Assess . 1990;2:22–30
  26. Ware JE , Kemp JP , Buchner AE . Responsiveness of disease specific and generic measures to changes in severity of asthma among adults . Qual Life Res . 1998;7:235–244
  27. Liang MH . Longitudinal construct validity. Establishment of clinical meaning in patient evaluative instruments . Med Care . 2000;35(suppl II):84–90
  28. Osobo D . Interpreting the meaningfulness of changes in health-related quality of life scores: lessons from studies in adults . Inter J Cancer . 1999;(suppl 12):132–137
  29. Juniper EF , Guyatt GH , Willan A , et al.   Determining a minimal important change in a disease specific quality of life questionnaire . J Clin Epid . 1994;47:81–87
  30. Hays RD , Morales LS , Reise SR . Item response theory and health outcomes measurement in the 21st century . Med Care . 2000;38(suppl II):28–42
  31. Hambleton RK , Swaminathan H , Rogers HT . Fundamentals of item response theory . Newbury Park, Cal: Sage; 1991;
  32. Embretson S . The new rules of measurement . Psychol Assess . 1996;8:341–349
  33. Ware JE . Conceptualization and measurement of health-related quality of life: comments on an evolving field . Arch Phys Med Rehabil . 2002;83(suppl 2):51–59
  34. Schatschneider C , Francis DJ , Foorman BF , et al.   The dimensionality of phonological awareness: an application of item response theory . J Educ Psychol . 1999;91:467–478
  35. Ellert V , Thomas C , Ravens-Sieberer V , et al.   Using Item Response Theory to improve QOL measures for children. First results from the child dynamic health assessment [abstract] . Qual Life Res . 2001;10:203
  36. Liang KY , Zeger SL . Longitudinal data analysis using generalized linear models . Biometr . 1986;73:13–22
  37. Rogosa D , Brandt D , Zimonowski M . A growth curve approach to the measurement of change . Psychol Bull . 1982;92:726–748
  38. Frank RG , Thayer JF , Hoaglund KJ . Trajectories of adaptation in pediatric chronic illness: the importance of the individual . J Consult Clin Psychol . 1998;66:521–532
  39. Cook WL , Goldstein MJ . Multiple perspectives in family relationships: a latent variables model . Child Dev . 1993;64:1377–1388
  40. Power TJ , Andrews TJ , DuPaul GJ , et al.   Evaluating attention deficit disorder using multiple informants: the incremental utility of combining teacher with parent reports . Psychol Assess . 1998;10:250–260

PII: S1530-1567(05)60325-5

doi: 10.1367/A03-101R.1

Ambulatory Pediatrics
Volume 4, Issue 4 , Pages 358-364 , July 2004