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Expert Review of Pharmacoeconomics & Outcomes Research Volume 5, 2005 - Issue 6
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Review

The PedsQL™ as a pediatric patient-reported outcome: reliability and validity of the PedsQL™ Measurement Model in 25,000 children

James W Varni College of Architecture, Texas A&M University, College Station, 77843–3137 TX USA. www.pedsql.org [email protected]
,
Tasha M Burwinkle The Children’s Hospital at Scott & White, Texas A&M University Health Science Center, 2401 South 31st Street, Temple, TX 76508 USA. [email protected]
&
Michael Seid RAND Health, 1776 Main Street, M4W, Santa Monica, CA 90407 USA. [email protected]
Pages 705-719 | Published online: 09 Jan 2014

References

  • Acquadro C, Berzon R, Dubois D et al. Incorporating the patient’s perspective into drug development and communication: An ad hoc task force report of the patient-reported outcomes (PRO) harmonization group meeting at the Food and Drug Administration, February 16, 2001. Value Health 6, 522–531 (2003).
  • Willke RJ, Burke LB, Erickson P. Measuring treatment impact: A review of patient-reported outcomes and other efficacy end points in approved product labels. Control. Clin. Trials 25, 535–552 (2004).
  • Varni JW, Katz ER, Colegrove R, Dolgin M. Adjustment of children with newly diagnosed cancer: Cross-informant variance. J. Psychosocial Onc. 13, 23–38 (1995).
  • Koot HM, Wallander JL, Schmitt M. Quality of life measurement in children and adolescents: issues, instruments, and applications. J. Clin. Psychol. 57(4), 571–585 (2001).
  • Fayers PM, Machin D. In: Quality of life: Assessment, analysis, and interpretation. Wiley, NY, USA (2000).
  • Varni JW, Seid M, Rode CA. The PedsQL™: Measurement model for the Pediatric Quality of Life Inventory™ . Med. Care 37, 126–139 (1999).
  • Varni JW, Seid M, Kurtin PS. The PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Med. Care 39, 800–812 (2001).
  • Eiser C, Morse R. Quality of life measures in chronic diseases of childhood. Health Technol. Assess. 5, 1–158 (2001).
  • Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK. Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value Health 7, 79–92 (2004).
  • Varni JW, Thompson KL, Hanson V. The Varni/Thompson Pediatric Pain Questionnaire: I. Chronic musculoskeletal pain in juvenile rheumatoid arthritis. Pain 28, 27–38 (1987).
  • Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL™ 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambul. Pediatr. 3, 329–341 (2003).
  • Varni JW, Burwinkle TM, Seid M. The PedsQL™ 4.0 as a school population health measure: Feasibility, reliability, and validity. Qual. Life Res. in press. Ambul. Pediatr. 3(6), 329–341 (2003).
  • Aday LA. In: Designing and conducting health surveys: A comprehensive guide. 2nd ed. Jossey-Bass, CA, USA (1996).
  • Fowler FJ Jr. In: Improving survey questions: Design and evaluation. Thousand Oaks, CA, USA (1995).
  • Schwarz N, Sudman N (Eds). Answering questions: Methodology for determining cognitive and communicative processes in survey research. Jossey-Bass, CA, USA (1996).
  • Sudman S, Bradburn NM, Schwarz N. Thinking about answers: In: The application of cognitive processes to survey methodology. Jossey-Bass, CA, USA (1996).
  • Uzark K, Jones K, Burwinkle TM, Varni JW. The Pediatric Quality of Life Inventory™ in children with heart disease. Prog. Pediatr. Cardiol. 18, 141–148 (2003).
  • Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL. The PedsQL™ in Type 1 and Type 2 diabetes: Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Type 1 Diabetes Module. Diabetes Care 26, 631–637 (2003).
  • Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. 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 (2002).
  • Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N. The PedsQL™ in pediatric asthma: Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Asthma Module. J. Behav. Med. 27, 297–318 (2004).
  • Varni JW, Burwinkle TM, Sherman SA et al. Health-related quality of life of children and adolescents with cerebral palsy: Hearing the voices of the children. Dev. Med. Child Neurol. 47(9), 592–597 (2005).
  • Varni JW, Burwinkle TM, Szer IS. The PedsQL™ Multidimensional Fatigue Scale in pediatric rheumatology: Reliability and validity. J. Rheumatol. 31, 2494–2500 (2004).
  • Varni JW, Seid M, Knight TS, Burwinkle TM, Brown J, Szer IS. The PedsQL™ in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ Generic Core Scales and Rheumatology Module. Arthritis Rheum. 46, 714–725 (2002).
  • Varni JW, Seid M, Knight TS, Uzark K, Szer IS. The PedsQL™ 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making. J. Behav. Med. 25, 175–193 (2002).
  • Chan KS, Mangione-Smith R, Burwinkle TM, Rosen M, Varni JW. The PedsQL™: Reliability and validity of the Short-Form Generic Core Scales and Asthma Module. Med. Care 43, 256–265 (2005).
  • Upton P, Eiser C, Cheung I et al. Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) Generic Core Scales. Health Qual. Life Outcomes 22, 1–7 (2005).
  • Eiser C, Vance YH, Horne B, Glaser A, Galvin H. The value of the PedsQL™ in assessing quality of life in survivors of childhood cancer. Child Care Health Dev. 29, 95–102 (2003).
  • Schwimmer JB, Burwinkle TM, Varni JW. Health-related quality of life of severely obese children and adolescents. JAMA 289, 1813–1819 (2003).
  • Bastiaansen D, Koot HM, Bongers IL, Varni JW, Verhulst FC. Measuring quality of life in children referred for psychiatric problems: Psychometric properties of the PedsQL™ 4.0 Generic Core Scales. Qual. Life Res. 13, 489–495 (2004).
  • Crabtree VM, Varni JW, Gozal D. Health-related quality of life and depressive symptoms in children with suspected sleep-disordered breathing. Sleep 27, 1131–1138 (2004).
  • Felder-Puig R, Frey E, Proksch K, Varni JW, Gadner H, Topf R. Validation of the German version of the Pediatric Quality of Life Inventory™ (PedsQL™) in childhood cancer patients off treatment and children with epilepsy. Qual. Life Res. 13, 223–234 (2004).
  • Meeske K, Katz ER, Palmer SN, Burwinkle TM, Varni JW. Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer 101, 2116–2125 (2004).
  • Sawyer MG, Whitham JN, Roberton DM, Taplin JE, Varni JW, Baghurst PA. The relationship between health-related quality of life, pain, and coping strategies in juvenile idiopathic arthritis. Rheumatology 43, 325–330 (2004).
  • Williams J, Wake M, Hesketh K, Maher E, Waters E. Health-related quality of life of overweight and obese children. JAMA 293, 70–76 (2005).
  • Sallee FR, Ambrosini PJ, Lopez FA, Shi L, Michaels MA. Health-related quality of life and treatment satisfaction and preference in a community assessment study of extended-release mixed amphetamine salts for children with attention-deficit/hyperactivity disorder. J. Outcomes Res. 8, 27–49 (2004).
  • Youssef NN, Rosh JR, Loughran M et al. Treatment of functional abdominal pain in childhood with cognitive behavioral strategies. J. Pediatr. Gastroenterol. Nutr. 39, 192–196 (2004).
  • Powers SW, Patton SR, Hommel KA, Hershey AD. Quality of life in childhood migraines: Clinical impact and comparison to other chronic illnesses. Pediatrics 112, e1–e5 (2003).
  • Powers SW, Patton SR, Hommel KA, Hershey AD. Quality of life in pediatric migraine: Characterization of age-related effects using PedsQL™ 4.0. Cephalalgia 24, 120–127 (2004).
  • Friefeld S, Yeboah O, Jones JE, DeVeber G. Health-related quality of life and its relationship to neurological outcome in child survivors of stroke. CNS Sprectrum 9, 465–475 (2004).
  • Mansour ME, Kotagal U, Rose B et al. Health-related quality of life in urban elementary schoolchildren. Pediatrics 111, 1372–1381 (2003).
  • Bastiaansen D, Koot HM, Ferdinand RF, Verhulst FC. Quality of life in children with psychiatric disorders: Self, parent, and clinician report. J. Am. Acad. Child Adolesc. Psychiatry 43, 221–230 (2004).
  • Razzouk BI, Hockenberry M, Hinds PS. Influence of hemoglobin response to epoetin alfa on quality of life in anemic children with cancer receiving myelosuppressive chemotherapy. In: Program and abstracts of the 46th Annual Meeting of the American Society of Hematology December 4–7, CA, USA (2004).
  • Varni JW, Burwinkle TM, Berrin SJ et al. The PedsQL™ in pediatric cerebral palsy: Reliability, validity, and sensitivity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Cerebral Palsy Module. Dev. Med. Child Neurol. 47(9), 592–597 (2005).
  • Fayers PM, Hand DJ. Factor analysis, causal indicators and quality of life. Qual. Life Res. 6, 139–150 (1997).
  • Seid M, Sobo EJ, Gelhard LR, Varni JW. Parents’ reports of barriers to care for children with special healthcare needs: Development and validation of the Barriers to Care Questionnaire. Ambul. Pediatr. 4, 323–331 (2004).
  • Seid M, Varni JW, Bermudez LO et al. Parent’s Perceptions of Primary Care: Measuring parent’s experiences of pediatric primary care quality. Pediatrics 108, 264–270 (2001).
  • Seid M, Varni JW, Segall D, Kurtin PS. Health-related quality of life as a predictor of pediatric healthcare costs: A two-year prospective cohort analysis. Health Qual. Life Outcomes 2(48), 1–10 (2004).
  • Campo JV, Comer DM, Jansen-McWilliams L, Gardner W, Kelleher KJ. Recurrent pain, emotional distress, and health service use in childhood. J Pediatr 141, 76–83 (2002).
  • Janicke DM, Finney JW, Riley AW. Children’s healthcare use: A prospective investigation of factors related to care-seeking. Med. Care 39, 990–1001 (2001).
  • Varni JW, Setoguchi Y. Screening for behavioral and emotional problems in children and adolescents with congenital or acquired limb deficiencies. Am. J. Dis. Child 146, 103–107 (1992).
  • Eiser C, Morse R. Can parents rate their child’s health-related quality of life? Results from a systematic review. Qual. Life Res. 10, 347–357 (2001).
  • Mangione-Smith R, Schonlau M, Chan KS et al. Measuring the effectiveness of a collaborative for quality improvement in pediatric asthma care: Does implementing the chronic care model improve processes and outcomes of care? Ambul. Pediatr. 5, 75–82 (2005).
  • Thompson KL, Varni JW. A developmental cognitive-biobehavioral approach to pediatric pain assessment. Pain 25, 282–296 (1986).
  • Varni JW, Waldron SA, Gragg RA et al. Development of the Waldron/Varni Pediatric Pain Coping Inventory. Pain 67, 141–150 (1996).
  • Fairclough DL. Design and analysis of quality of life studies in clinical trials. In: Interdisciplinary statistics. Chapman & Hall, NY, USA. (2002).
  • Wyrwich K, Tierney W, Wolinsky F. Further evidence supporting an SEM-based criterion for identifying meaningful intra-individual changes in health-related quality of life. J. Clin. Epidemiol. 52, 861–873 (1999).
  • Jaeschke R, Singer J, Guyatt GH. Measurement of health status: Ascertaining the minimal clinically important difference. Control. Clin. Trials 10, 407–415 (1989).
  • Wyrwich K, Tierney W, Wolinsky F. Using the standard error of measurement to identify important changes on the Asthma Quality of Life Questionnarie. Qual. Life Res. 11, 1–7 (2002).
  • Acquadro C, Conway K, Giroudet C, Mear I. In: Linguistic validation manual for patient-reported outcomes (PRO) instruments. Mapi Research Institute, Lyon, France (2004).
  • Varni JW, Sherman SA, Burwinkle TM, Dickinson P, Dixon P. The PedsQL™ Family Impact Module: Preliminary reliability and validity. Health Qual. Life Outcomes 55, 1–6 (2004).
  • Varni JW, Burwinkle TM, Dickinson P et al. Evaluation of the built environment at a Children’s Convalescent Hospital: Development of the PedsQL™ Parent and Staff Satisfaction Measures for pediatric healthcare facilities. J. Dev. Behav. Pediatr. 25, 10–25 (2004).
  • Varni JW, Quiggins DJL, Ayala GX. Development of the Pediatric Hematology/Oncology Parent Satisfaction survey. Child. Healthcare 29, 243–255 (2000).
  • Vickers AJ. Statistical considerations for use of composite health-related quality of life scores in randomized trials. Qual. Life Res. 13, 717–723 (2004).
  • Varni JW, Wilcox KT, Hanson V, Brik R. Chronic musculoskeletal pain and functional status in juvenile rheumatoid arthritis: An empirical model. Pain 32, 1–7 (1988).
  • Varni JW, Katz ER, Seid M, Quiggins DJL, Friedman-Bender A. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32): I. Reliability and validity. Cancer 82, 1184–1196 (1998).
  • Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Health Qual. Life Outcomes 34, 1–9 (2005).
  • Leape LL, Berwick DM. Five years after To Err is Human: What have we learned? JAMA 293, 2384–2390 (2005).
  • Institute of Medicine. To err is human: Building a safer health system. National Academy Press, WA, USA. (1999).

Website

  • PedsQL™ Measurement Model www.pedsql.org (Accessed November 2005)

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