Seminars in Pediatric Surgery
Volume 17, Issue 2 , Pages 69-78 , May 2008

Contemporary outcomes research: tools of the trade

  • Casey M. Calkins, MD

      Affiliations

    • Corresponding Author InformationAddress reprint requests and correspondence: Casey M. Calkins, MD, Children’s Hospital of Wisconsin Corporate Center, 999 North 92nd Street, Suite C320, Milwaukee, WI 53226.

References 

  1. Codman EA. The Shoulder: Rupture of the Supraspinatus Tendon and Other Lesions in or About the Subacromial Bursa. Boston, MA: T. Todd Company; 1934;
  2. Field MJ, Tranquanda RE, Feasley JC, et al. Committee on Health Services Research: Training and Work Force Issues. Health Services Research: Work Force and Educational Issues. Washington DC: National Academy Press; 1995;
  3. Lieu TA, Newman TB. Issues in studying the effectiveness of health services for children. Health Serv Res. 1998;33(4):1041–1058
  4. Ware JE. The status of health assessment 1994. Annu Rev Public Health. 1995;16:327–354
  5. Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life. Med Care. 1989;27(3):S217–S232(suppl).
  6. Hays RD, Anderson R, Revicki D. Psychometric considerations in evaluating health-related quality of life measures. Qual Life Res. 1993;2(6):441–449
  7. Kozinetz CA, Warren RW, Berseth CL, et al. Health status of children with special health care needs: measurement issues and instruments. Clin Pediatr (Phila). 1999;38(9):525–533
  8. Colver A, Jessen C. Measurement of health status and quality of life in neonatal follow-up studies. Semin Neonatol. 2000;5(2):149–157
  9. Landgraf JM, Maunsell E, Speechley KN, et al. Canadian-French (German and UK versions of the Child Health Questionnaire: methodology and preliminary item scaling results). Qual Life Res. 1998;7(5):433–445
  10. Drotar D. Measuring Health-Related Quality of Life in Children and Adolescents: Implications for Research and Practice. Mahwah, NJ: Lawrence Erlbaum Associates; 1998;
  11. Theunissen NC, Vogels TG, Koopman HM, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res. 1998;7(5):387–397
  12. Bullinger M. German translation and psychometric testing of the SF-36 Health Survey: preliminary results from the IQOLA Project (International Quality of Life Assessment). Soc Sci Med. 1995;41(10):1359–1366
  13. Griebsch I, Coast J, Brown J. Quality-adjusted life-years lack quality in pediatric care: a critical review of published cost-utility studies in child health. Pediatrics. 2005;115(5):e600–e614
  14. Higginson IJ, Carr AJ. Measuring quality of life: using quality of life measures in the clinical setting. Br Med J. 2001;322(7297):1297–1300
  15. Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:43
  16. 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. 2005;3:34
  17. Varni JW, Seid M, Kurtin PS. 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. 2001;39(8):800–812
  18. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37(2):126–139
  19. Starfield B, Bergner M, Ensminger M, et al. Adolescent health status measurement: development of the Child Health and Illness Profile. Pediatrics. 1993;91(2):430–435
  20. Chen SP, Chen EH. Application of modified CHIP-AE in a vocational high school. ABNF J. 1999;10(5):104–110
  21. Ware JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36) (I. Conceptual framework and item selection). Med Care. 1992;30(6):473–483
  22. McHorney CA, Ware JE, Raczek AE. The MOS 36-Item Short-Form Health Survey (SF-36) (II. Psychometric and clinical tests of validity in measuring physical and mental health constructs). Med Care. 1993;31(3):247–263
  23. Raat H, Bonsel GJ, Essink-Bot ML, et al. Reliability and validity of comprehensive health status measures in children: The Child Health Questionnaire in relation to the Health Utilities Index. J Clin Epidemiol. 2002;55(1):67–76
  24. Raat H, Mangunkusumo RT, Landgraf JM, et al. Feasibility, reliability, and validity of adolescent health status measurement by the Child Health Questionnaire Child Form (CHQ-CF): internet administration compared with the standard paper version. Qual Life Res. 2007;16(4):675–685
  25. Ravens-Sieberer U, Bullinger M. Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res. 1998;7(5):399–407
  26. Wasson JH, Kairys SW, Nelson EC, et al. A short survey for assessing health and social problems of adolescents (Dartmouth Primary Care Cooperative Information Project (The COOP)). J Fam Pract. 1994;38(5):489–494
  27. Stolk EA, Busschbach JJ, Vogels T. Performance of the EuroQol in children with imperforate anus. Qual Life Res. 2000;9(1):29–38
  28. Stam H, Hartman EE, Deurloo JA, et al. Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health. 2006;39(1):4–13
  29. Goyal A, Williams JM, Kenny SE, et al. Functional outcome and quality of life in anorectal malformations. J Pediatr Surg. 2006;41(2):318–322
  30. Poley MJ, Stolk EA, Tibboel D, et al. Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia. Arch Dis Child. 2004;89(9):836–841
  31. Shamberger RC, Masek BJ, Leichtner AM, et al. Quality-of-life assessment after ileoanal pull-through for ulcerative colitis and familial adenomatous polyposis. J Pediatr Surg. 1999;34(1):163–166
  32. O’Neill JK, O’Neill PJ, Goth-Owens T, et al. Care-giver evaluation of anti-gastroesophageal reflux procedures in neurologically impaired children: what is the real-life outcome?. J Pediatr Surg. 1996;31(3):375–380
  33. Gatti C, di Abriola GF, Villa M, et al. Esophagogastric dissociation versus fundoplication: which is best for severely neurologically impaired children?. J Pediatr Surg. 2001;36(5):677–680
  34. Winthrop AL, Brasel KJ, Stahovic L, et al. Quality of life and functional outcome after pediatric trauma. J Trauma. 2005;58(3):468–473discussion 473-4.
  35. Schwankovsky L, Mousa H, Rowhani A, et al. Quality of life outcomes in congenital chronic intestinal pseudo-obstruction. Dig Dis Sci. 2002;47(9):1965–1968
  36. Ludman L, Spitz L. Quality of life after gastric transposition for oesophageal atresia. J Pediatr Surg. 2003;38(1):53–57
  37. Tawfik R, Dickson A, Clarke M, et al. Caregivers’ perceptions following gastrostomy in severely disabled children with feeding problems. Dev Med Child Neurol. 1997;39(11):746–751
  38. Hanneman MJ, Sprangers MA, De Mik EL, et al. Quality of life in patients with anorectal malformation or Hirschsprung’s disease: development of a disease-specific questionnaire. Dis Colon Rectum. 2001;44(11):1650–1660
  39. Lewis CC, Pantell RH, Kieckhefer GM. Assessment of children’s health status (Field test of new approaches). Med Care. 1989;27(3):S54–S65(suppl).
  40. Stein RE, Jessop DJ. Functional status II(R) (A measure of child health status). Med Care. 1990;28(11):1041–1055
  41. Dumas HM, Haley SM, Ludlow LH, et al. Functional recovery in pediatric traumatic brain injury during inpatient rehabilitation. Am J Phys Med Rehabil. 2002;81(9):661–669
  42. Haley SM, Raczek AE, Coster WJ, et al. Assessing mobility in children using a computer adaptive testing version of the pediatric evaluation of disability inventory. Arch Phys Med Rehabil. 2005;86(5):932–939
  43. Kothari DH, Haley SM, Gill-Body KM, et al. Measuring functional change in children with acquired brain injury (ABI): comparison of generic and ABI-specific scales using the Pediatric Evaluation of Disability Inventory (PEDI). Phys Ther. 2003;83(9):776–785
  44. Andres PL, Black-Schaffer RM, Ni P, et al. Computer adaptive testing: a strategy for monitoring stroke rehabilitation across settings. Top Stroke Rehabil. 2004;11(2):33–39
  45. Msall ME, DiGaudio K, Rogers BT, et al. The Functional Independence Measure for Children (WeeFIM) (Conceptual basis and pilot use in children with developmental disabilities). Clin Pediatr (Phila). 1994;33(7):421–430
  46. Slomine BS, Brintzenhofeszoc K, Salorio CF, et al. A method for performance evaluation using WeeFIM data collected for the Joint Commission on Accreditation of Healthcare Organizations’ ORYX initiative: the 0.5 band control chart analysis. Arch Phys Med Rehabil. 2004;85(3):512–516
  47. The Collaborative UK ECMO (Extracorporeal Membrane Oxygenation) trial: follow-up to 1 year of age. Pediatrics. 1998;101(4):E1
  48. Ahmad A, Gangitano E, Odell RM, et al. Survival, intracranial lesions, and neurodevelopmental outcome in infants with congenital diaphragmatic hernia treated with extracorporeal membrane oxygenation. J Perinatol. 1999;19(6):436–440
  49. Peetsold MG, Vonk-Noordegraaf A, Heij HH, et al. Pulmonary function and exercise testing in adult survivors of congenital diaphragmatic hernia. Pediatr Pulmonol. 2007;42(4):325–331
  50. Trachsel D, Selvadurai H, Bohn D, et al. Long-term pulmonary morbidity in survivors of congenital diaphragmatic hernia. Pediatr Pulmonol. 2005;39(5):433–439
  51. Gold M. Panel on cost-effectiveness in health and medicine. Med Care. 1996;34(12):DS197-9 (suppl).
  52. Torrance GW, Feeny D. Utilities and quality-adjusted life years. Int J Technol Assess Health Care. 1989;5(4):559–575
  53. Spilker B. Quality of Life Assessments in Clinical Trials. New York, NY: Raven Press; 1990;
  54. Anderson JP, Kaplan RM, Berry CC, et al. Interday reliability of function assessment for a health status measure (The Quality of Well-Being scale). Med Care. 1989;27(11):1076–1083
  55. Kaplan RM, Ganiats TG, Sieber WJ, et al. The Quality of Well-Being Scale: critical similarities and differences with SF-36. Int J Qual Health Care. 1998;10(6):509–520
  56. Torrance GW, Feeny DH, Furlong WJ, et al. Multiattribute utility function for a comprehensive health status classification system (Health Utilities Index Mark 2). Med Care. 1996;34(7):702–722
  57. Feeny D, Furlong W, Barr RD, et al. A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol. 1992;10(6):923–928
  58. Johnson JA, Coons SJ, Ergo A, et al. Valuation of EuroQOL (EQ-5D) health states in an adult US sample. Pharmacoeconomics. 1998;13(4):421–433
  59. Akobundu E, Ju J, Blatt L, et al. Cost-of-illness studies: a review of current methods. Pharmacoeconomics. 2006;24(9):869–890
  60. Neumann PJ, Stone PW, Chapman RH, et al. The quality of reporting in published cost-utility analyses, 1976-1997. Ann Intern Med. 2000;132(12):964–972
  61. Ungar WJ, Santos MT. Trends in paediatric health economic evaluation: 1980 to 1999. Arch Dis Child. 2004;89(1):26–29

PII: S1055-8586(08)00003-6

doi: 10.1053/j.sempedsurg.2008.02.002

Seminars in Pediatric Surgery
Volume 17, Issue 2 , Pages 69-78 , May 2008