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Assessing the quality of life of children on dialysis

  • A. C. Gerson
  • S. L. Furth

Abstract

Kidney dialysis remains a life-sustaining treatment for youth who have renal failure. Optimum renal replacement therapy requires strict adherence to dialysis prescription, to complex medicine regimens, to diet requirements and restrictions and, to close follow-up with medical providers. While clinical markers of dialysis patient health status (e.g. hematocrit, albumin, growth, infections, hospitalization, and survival), are useful outcome markers, health care providers have become increasingly interested in patient and family perception of quality of life (QOL) as an adjunctive measure of treatment efficacy.

Keywords

Chronic Kidney Disease Renal Replacement Therapy Sickness Impact Profile National Kidney Foundation Vineland Adaptive Behavior Scale 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

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References

  1. 1.
    Spilker B. Introduction. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, Chap. 1. Philadelphia, 1996: pp. 1–10.Google Scholar
  2. 2.
    Eiser C, Morse R. The measurement of quality of life in children: Past and future prespectives. J Dev Behav Pediatr. 2001;22:248–56.PubMedCrossRefGoogle Scholar
  3. 3.
    World Health Organization: Constitution of the World Health Organization basic document. Geneva Switzerland, World Health Organization, 1948.Google Scholar
  4. 4.
    Patrick DL, Erikson P. Health Status and Health Policy: Quality of Life in Health Care Evaluation and Resource Allocation. New York: Oxford University, 1993.Google Scholar
  5. 5.
    Schipper H, Clinch JJ, Olweny CLM. Quality of life studies: definitions and conceptual issues. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, Chap 2. Philadelphia, 1996: pp. 11–23.Google Scholar
  6. 6.
    Szabo AB. The World Health Organization quality of life (WHOQOL) Assessment. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, Chap 36. Philadelphia, 1996: pp. 355–62.Google Scholar
  7. 7.
    Erling A. Methodological consideration in the assessment of health-related quality of life in children. Acta Paediatr Suppl. 1999;428:106–7.CrossRefGoogle Scholar
  8. 8.
    Landgraf JM, Abetz LN. Measuring health outcomes in pediatric populations:issues in psyhometrics and application. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, Chap 83. Philadelphia, 1996: pp. 793–802.Google Scholar
  9. 9.
    Rosenbaum RL, Saigal S. Measuring health-related quality of life in pediatric populations: Conceptual issues. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, Chap 82. Philadelphia, 1996: pp. 785–91.Google Scholar
  10. 10.
    Spilker B, Revicki DA. Taxonomy of Quality of Life. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, Chap 3. Philadelphia, 1996: pp. 25–32.Google Scholar
  11. 11.
    Torrance GW. Designing and conducting cost-utility analyses. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, Chap 114. Philadelphia, 1996: pp. 1105–12.Google Scholar
  12. 12.
    Patrick DL, Erikson P. Applications of health status assessment to health policy. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, Chap 74. Philadelphia, 1996: pp. 717–28.Google Scholar
  13. 13.
    Cagney KA, Wu AW, Fink NE, Jenckes MW, Meyer KB, Bass EB, Powe NR. Formal literature review of quality-of-life instruments used in end-stage renal disease. Am J Kidney Dis. 2000;36:327–36.PubMedCrossRefGoogle Scholar
  14. 14.
    Fürth SL, Gerson AC, Neu AM, Fivush BA. The impact of dialysis and transplantation on children. Adv Ren Replace Ther. 2001;8:206–13.PubMedCrossRefGoogle Scholar
  15. 15.
    National Kidney Foundation. NKF DOQI: Dialysis outcomes quality initiative. Am J Kidney Dis. 1997;30(3Suppl 2):S97.Google Scholar
  16. 16.
    Tagge EP, Campbell DA, Dafoe DC, Merion RM, Sedman AB, Keslsch RC, Mollen E, Rocher LL, Tucotte JG. Pediatric renal transplantation with an emphasis on the prognosis of patients with chronic renal insufficiency since infancy. Surgery. 1987;102:692–8.PubMedGoogle Scholar
  17. 17.
    Evans RW, Manninen DL, Garrison LP, Hart LG et al. The quality of life of patients with end-stage renal disease. N Engl J Med. 1985;312:553–9.PubMedCrossRefGoogle Scholar
  18. 18.
    National Kidney Foundation. K/DOQI Clinical Practice Guidelines for Chronic Kidney Disease: Evaluation, classification and stratification. Am J Kidney Dis. 2002;39(Suppl 1):S161–9.Google Scholar
  19. 19.
    Wu AW, Fink NE, Cagney KA, Bass EB, Rubin HR, Meyer KB, Sadler JH, Powe NR. Developing a health-related quality-of-life measure for end-stage renal disease: The CHOICE Health Experience Questionnaire. Am J Kidney Dis. 2001;37:11–21.PubMedGoogle Scholar
  20. 20.
    Roscoe JM, Smith LF, Williams EA, Stein M, Morton AR, Balfe JW, Arbus GS. Medical and social outcome in adolescents with end-stage renal failure. Kidney Int. 1991;40:948–53.PubMedCrossRefGoogle Scholar
  21. 21.
    Ehrich JHH, Rizzoni G, Broyer M, Brynger H, Fassbinder W, Gerrlings W, Seiwood NH, Tufeson G, Wing AG. Rehabilitation of young adults during renal replacement therapy in Europe: schooling, employment, and social situation. Nephrol Dial Transplant. 1992;7:579–86.PubMedGoogle Scholar
  22. 22.
    Offner G, Latta K, Hoyer PF. Kidney transplanted children come of age. Kidney Int. 1999;55: 1509–7.PubMedCrossRefGoogle Scholar
  23. 23.
    Morton MJS, Reynolds JM, Garralda ME, Postlethwalte RJ, Goh D. Psychiatric adjustment in end-stage renal disease: a follow up study of former paediatric patients. J Psychosom Res. 1994;38:296–303.CrossRefGoogle Scholar
  24. 24.
    Kurtin PS, Landgraf JM, Abetz LN. Patient-based health status measurements in pediatric dialysis: expanding the assessment of outcome. Am J Kidney Dis. 1994;24:376–82.PubMedGoogle Scholar
  25. 25.
    Gerson A, Fivush B A, Kaskel F, Weiss L, Powe NR, Furth SL. Functional outcome in adolescents with renal failure: assessing a generic health status questionnaire. Perit Dial Int. 2001;21(Suppl 1):S89.Google Scholar
  26. 26.
    Furth SL, Gerson AC, Fivush BA, Powe NR. The impact of anemia on health status in adolescents with ESRD: use of the Child Health Questionnaire (CHQ-PF50)-Parent Form. J Am Soc Nephrol. 2001;12:203A.Google Scholar
  27. 27.
    Gerson AC, Fivush BA, Riley A, Weiss R, Chandra M, Powe NR, Furth SL. Assessing the relationship between anemia, estimated GFR and quality of life in adolescents with renal failure. Pedaitr Nephrol. 2001;16(8):C161.Google Scholar
  28. 28.
    Pal DK. Quality of life assessment in children: a review of conceptual and methodological issues in multidimensional health status measures. J Epidemiol Community Health. 1996;50:391–6.PubMedCrossRefGoogle Scholar
  29. 29.
    Connolly MA, Johnson JA. Measuring quality of life in paediatric patients. Pharmacoeconomics. 1999;16:605–25.PubMedCrossRefGoogle Scholar
  30. 30.
    Marra CA, Levine M, McKerrow R, Carelton BC. Overview of health-related quality-of-life measures for pediatric patients: application in the assessment of pharmactherapeutic and pharmacoeconomic outcomes. Pharmacotherapy. 1996;16:879–88.PubMedGoogle Scholar
  31. 31.
    Starfield B, Riley AW, Green B, Ensminger M, Ryan SA, Kelleher K, Kim-Harris S, Johnston D, Vogel K. The adolescent child health and illness profile: a population-based measure of health. Med Care. 1995;33:553–66.PubMedCrossRefGoogle Scholar
  32. 32.
    Starfield B, Riley AW, Green BF, Ensminger ME, Forrest CB, Robertson J, Ryan S, Harris SK. Manual for The Child Health and Illness Profile: Adolescent Edition™. The Johns Hopkins University, 2000.Google Scholar
  33. 33.
    Starfield BS, Forrest CB, Ryan SA, Riley AW, Ensminger ME, Green BF. Health status of well verses ill adolescents. Arch Pediatr Adolesc Med. 1996;150:1249–56.PubMedCrossRefGoogle Scholar
  34. 34.
    Starfield B, Riley AW, Witt WP, Robertson J. Social class gradients in health during adolescence. J Epidemiol Community Health. 2002;56:354–61.PubMedCrossRefGoogle Scholar
  35. 35.
    Landgraf JM, Abetz LN, Ware JE. The CHQ User’s Manual (edn. Second Printing). Boston: Health Act; 1999.Google Scholar
  36. 36.
    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;39:800–12.PubMedCrossRefGoogle Scholar
  37. 37.
    Varni JW, Seid M, Knight TS, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology. Arthritis Rheum. 2002;46:714–25.PubMedCrossRefGoogle Scholar
  38. 38.
    Varni JW, Burwinkle T, Katz M, Meeske K, Dickinson P. The PedsQL in pediatric cancer. Cancer. 2002;94:2090–106.PubMedCrossRefGoogle Scholar
  39. 39.
    Varni JW. Development of renal module for PedsQL. 9-25-2002. 9-25-0002 (internet communication).Google Scholar
  40. 40.
    Nelson EC, Wasson JH, Johnson J, Hays RD. Dartmouth COOP Functional Health Assessment charts: brief measures for clinical practice. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials, Chap 19. Philadelphia, 1996: pp. 161–8.Google Scholar
  41. 41.
    Wasson JH, Kairys SW, Nelson EC, Kalishman N, Baribeau P. A short survey for assessing health and social problems of adolescents. J Fam Prac. 1994;38:489–94.Google Scholar
  42. 42.
    Wasson JH. Dialysis module for COOP charts. Gerson AC 9-26-2002 (internet communication).Google Scholar
  43. 43.
    Lewis CC, Pantell RH, Kieckhefer GM: Assessment of children’s health status: field test of new approaches. Med Care. 1989;27:S54–65.PubMedCrossRefGoogle Scholar
  44. 44.
    Stein RFK, Jessop DJ. Functional Status II(R): A measure of child health status. Med Care. 1990;28:1041–55.PubMedCrossRefGoogle Scholar
  45. 45.
    Sparrow SS, Balla DA, Cirrhetti DV. Vineland Adaptive Behavior Scales. Minneapolis: Circle Press, American Guidance Service, 1985.Google Scholar
  46. 46.
    Fennell RS, Fennell EB, Carter RL, Mings EL, Klausner AB, Hurst JR. A longitudinal study of the cognitive function of children with renal failure. Pedaitr Nephrol. 1990;4:11–15.CrossRefGoogle Scholar
  47. 47.
    Fennell RS, Fennell EB, Carter RL, Mings EL, Klausner AB, Hurst JR. Association between renal function and cognition in childhood chronic renal failure. Pediatr Nephrol. 1990;4:16–20.PubMedCrossRefGoogle Scholar
  48. 48.
    Hulstijn-Dirkmaat GM, Damhuis IHW, Jetten MLJ, Koster AM, Schroder CH. The cognitive development of pre-school children treated for chronic renal failure. Pediatr Nephrol. 1995;9:464–9.PubMedCrossRefGoogle Scholar
  49. 49.
    Bock GH, Conners K, Ruley J, Samango-Sprouse CA, Conry JA, Weiss I, Eng G, David CT. Disturbances of brain maturation and neurodevelopment during chronic renal failure in infancy. J Pediatr. 1989;144:231–8.Google Scholar
  50. 50.
    Spreeng O, Strauss E: A Compendium of Neuropsychological Tests: Administration, Norms and Commentary, 2nd edn. New York: Oxford University Press, 1998.Google Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2004

Authors and Affiliations

  • A. C. Gerson
  • S. L. Furth

There are no affiliations available

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