Best Practice & Research Clinical Rheumatology
Volume 20, Issue 2 , Pages 223-240 , April 2006

What are the costs of childhood-onset rheumatic disease?

  • Kirsten Minden, MD (German Rheumatism Research Centre Berlin, Epidemiology Unit)

      Affiliations

    • Corresponding Author InformationAddress: Deutsches Rheuma-Forschungszentrum Berlin, Schumannstr. 21/22, 10117 Berlin, Germany. Tel.: +49 30 28460632; Fax: +49 30 28460626.

References 

  1. Ungar WJ, Santos MT. The pediatric economic database evaluation (PEDE) project. Medical Care. 2003;41:1142–1152
  2. Ungar WJ, Santos MT. Trends in paediatric health economic evaluation: 1980 to 1999. Archives of Disease in Childhood. 2004;89:26–29
  3. Goodman JE, McGrath P. The epidemiology of pain in children and adolescents: a review. Pain. 1991;46:247–264
  4. Ziv A, Boulet JR, Slap GB. Utilization of physician offices by adolescents in the United States. Pediatrics. 1999;104:35–42
  5. De Inocencio J. Musculoskeletal pain in primary pediatric care: analysis of 1000 consecutive general pediatric clinic visits. Pediatrics. 1998;102(6):E63
  6. McGhee JL, Burks FN, Sheckels JL, Jarvis JN. Identifying children with chronic arthritis based on chief complaints: absence of predictive value for musculoskeletal pain as an indicator of rheumatic disease in children. Pediatrics. 2002;110:354–390
  7. Buskila D, Press J, Gedalia A, et al. Assessment of nonarticular tenderness and prevalence of fibromyalgia in children. Journal of Rheumatology. 1993;20:368–370
  8. Watson KD, Papageorgiou AC, Jones GT, et al. Low back pain in schoolchildren: occurrence and characteristics. Pain. 2002;97:87–92
  9. Kashikar-Zuck S, Graham TB, Huenefeld MD, Powers SW. A review of biobehavioral research in juvenile primary fibromyalgia syndrome. Arthritis Care Research. 2000;13:388–397
  10. Oen K, Malleson PN, Cabral DA, et al. Disease course and outcome of juvenile rheumatoid arthritis in a multicenter cohort. Journal of Rheumatology. 2002;29:1989–1999
  11. Minden K, Niewerth M, Listing J, et al. Long-term outcome in patients with juvenile idiopathic arthritis. Arthritis and Rheumatism. 2002;46:2392–2401
  12. Flato B, Lien G, Smerdel A, et al. Prognostic factors in juvenile rheumatoid arthritis: a case-control study revealing early predictors and outcome after 14.9 years. Journal of Rheumatology. 2003;30:386–393
  13. Foster HE, Marshall N, Myers A, et al. Outcome in adults with juvenile idiopathic arthritis: a quality of life study. Arthritis and Rheumatism. 2003;48:767–775
  14. French AR, Mason T, Nelson AM, et al. Increased mortality in adults with a history of juvenile rheumatoid arthritis: a population-based study. Arthritis and Rheumatism. 2001;44:523–527
  15. Thomas E, Symmons DP, Brewster DH, et al. National study of cause-specific mortality in rheumatoid arthritis, juvenile chronic arthritis, and other rheumatic conditions: a 20 year followup study. Journal of Rheumatology. 2003;30:958–965
  16. Stichweh D, Arce E, Pascual V. Update on pediatric systemic lupus erythematosus. Current Opinion in Rheumatology. 2004;16:577–587
  17. Manners PJ, Bower C. Worldwide prevalence of juvenile arthritis why does it vary so much?. Journal of Rheumatology. 2002;29:1520–1530
  18. Neff JM, Anderson G. Protecting children with chronic illness in a competitive marketplace. Journal of the American Medical Association. 1995;274:1866–1869
  19. Cummins C, Connock M, Fry-Smith A, Burls A. A systematic review of effectiveness and economic evaluation of new drug treatments for juvenile idiopathic arthritis: etanercept. Health Technology Assessment. 2002;6:1–43
  20. Allaire SH, DeNardo BS, Szer IS, et al. The economic impacts of juvenile rheumatoid arthritis. Journal of Rheumatology. 1992;19:952–955
  21. Minden K, Niewerth M, Listing J, et al. Burden and cost of illness in patients with juvenile idiopathic arthritis. Annals of the Rheumatic Diseases. 2004;63:836–842
  22. Klein-Gitelman MS, Waters T, Pachman L. The economic impact of intermittent high-dose intravenous versus oral corticosteroid treatment of juvenile dermatomyositis. Arthritis Care Research. 2000;13:360–368
  23. Haapasaari J, Kautiainen HJ, Isomäki HA, Hakala M. Etanercept does not essentially increase the total costs of the treatment of refractory juvenile idiopathic arthritis. Journal of Rheumatology. 2004;31:2286–2289
  24. Ungar WJ, Santos MT. Quality appraisal of paediatric health economic evaluations. International Journal of Technology Assessment in Health Care. 2005;21:203–210
  25. Tranmer JE, Guerriere DN, Ungar WJ, Coyte PC. Valuing patient and caregiver time: a review of the literature. Pharmacoeconomics. 2005;23:449–459
  26. Brunner HI, Giannini EH. Health-related quality of life in children with rheumatic diseases. Current Opinion in Rheumatology. 2003;15:602–612
  27. De Civita M, Regier D, Alamgir AH, et al. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics. 2005;23:659–685
  28. Landgraf JM, Abetz L, Ware JE. Child Health Questionnaire (CHQ): A User's Manual. Boston: The Health Institute, New England Medical Center; 1996;
  29. Varni JW, Seid M, Knight TS, et al. The pedsQL in pediatric rheumatology. Arthritis and Rheumatism. 2002;46:714–725
  30. Seid M, Varni JW, Segall D, Kurtin PS. Health-related quality of life as a predictor of paediatric health-care costs: a two-year prospective cohort analysis. Health and Quality of Life Outcomes. 2004;2:48–58
  31. Newacheck PW, Kim SE. A national profile of health care utilization and expenditures for children with special health care needs. Archives of Pediatrics and Adolescent Medicine. 2005;159:10–17
  32. Adam V, St.-Pierre Y, Fautrel B, et al. What is the impact of adolescent arthritis and rheumatism?. Journal of Rheumatology. 2005;32:354–361
  33. Bernatsky S, Duffy C, Penrod J, et al. Health service use in juvenile idiopathic arthritis (JIA). Arthritis and Rheumatism. 2003;48(supplement):S94
  34. Konijnenberg AY, De Graeff-Meeder ER, Kimpen JL, et al. Children with unexplained chronic pain: do pediatricians agree regarding the diagnostic approach and presumed primary cause?. Pediatrics. 2004;114:1220–1226
  35. Malleson PN, Connell H, Bennett SM, Eccleston C. Chronic musculoskeletal and other idiopathic pain syndromes. Archives of Disease in Childhood. 2001;84:189–192
  36. Kunkel A, Wright SJ, Belmont JM, et al. Referral patterns and care profiles of children with juvenile rheumatic disease. Arthritis and Rheumatism. 2002;46(supplement):S96
  37. Kiessling U, Döring E, Listing J, et al. Incidence and prevalence of juvenile chronic arthritis in East Berlin 1980–88. Journal of Rheumatology. 1998;25:1837–1843
  38. Fautrel B, Saraux A, Maillefert J-F, et al. Costs of workups for the diagnosis of early arthritis: results of a nationwide study. Arthritis and Rheumatism. 2004;15:507–512
  39. McBeth J, Macfarlane GJ, Benjamin S, et al. The association between tender points, psychological distress, and adverse childhood experiences: a community-based study. Arthritis and Rheumatism. 1999;42:1397–1404
  40. Campo JV, Comer DM, Jansen-Mcwilliams L, et al. Recurrent pain, emotional distress, and health service use in childhood. Journal of Pediatrics. 2002;141:76–83
  41. Brunner HI, Sherrard TM, Klein-Gitelman MS. Cost of treatment of childhood-onset systemic lupus erythematodes (cSLE). Arthritis and Rheumatism. 2004;50(supplement):S533
  42. Brunner HI, Barron AC, Graham TB, et al. Effects of treatment on costs and health-related quality of life (HRQL) of children with polyarticular course juvenile rheumatoid arthritis (JRA). Arthritis and Rheumatism. 2004;50(supplement):S686
  43. Bernatsky S, Duffy C, Penrod J, et al. The economic impact of juvenile idiopathic arthritis (JIA). Arthritis and Rheumatism. 2004;50(supplement):S533
  44. Guillemin F, Durieux S, Daurès J-P, et al. Costs of rheumatoid arthritis in France: a multicenter study of 1109 patients managed by hospital-based rheumatologists. Journal of Rheumatology. 2004;31:1297–1304
  45. Yelin E, Cisternas MG, Pasta DJ, et al. Medical care expenditures and earning losses of persons with arthritis and other rheumatic conditions in the United States in 1997. Arthritis and Rheumatism. 2004;50:2317–2326
  46. Bent N, Tennant A, Swift T, et al. Team approach versus ad hoc health service for young people with physical disabilities: a retrospective cohort study. Lancet. 2002;360:1280–1286
  47. Minden K, Niewerth M, Zink A. For the German working group of paediatric rheumatologists. The national database for children and adolescents with rheumatic diseases 2004. Medizinische Welt. 2004;55:73–77
  48. Lovell DJ, Athreya B, Emery HM, et al. School attendance and patterns, special services and special needs in pediatric patients with rheumatic diseases. Arthritis Care Research. 1990;3:196–203
  49. Klein-Gitelman MS, Kress A, Dobrez D, et al. Non-medical costs of pediatric rheumatic disease. Arthritis and Rheumatism. 2002;46(supplement):S91
  50. Ruof J, Hülsemann JL, Mittendorf T, et al. Costs of rheumatoid arthritis in Germany: a micro-costing approach based on health-care payer's data sources. Annals of the Rheumatic Diseases. 2003;62:544–550
  51. Cooper NJ, Mugford M, Scott DG, et al. Secondary health service care and second line drug costs of early inflammatory polyarthritis in Norfolk, UK. Journal of Rheumatology. 2000;27:2115–2122
  52. Leardini G, Salaffi E, Montanelli R, et al. A multicenter cost-of-illness study in rheumatoid arthritis in Italy. Clinical and Experimental Rheumatology. 2002;20:505–515
  53. Minden K, Niewerth M, Zink A, Ganser G. Transition clinic—it is not always a simple segue in rheumatology for adults. Zeitschrift fur Rheumatologie. 2005;64:327–333
  54. Minden K, Niewerth M, Zink A, Schneider M. Prognosis of systemic lupus erythematodes. Monatsschrift fur Kinderheilkunde. 2004;152(supplement 1):71
  55. Mayer ML, Mellins ED, Sandborg CI. Access to pediatric rheumatology care in the United States. Arthritis and Rheumatism. 2003;49:759–765
  56. Sawyer MG, Whitham JN, Roberton DM, et al. The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. Rheumatology. 2004;43:325–330
  57. Brunner HI, Klein-Gitelman MS, Miller MJ, et al. Health of children with chronic arthritis: relationship of different measures and the quality of parent proxy reporting. Arthritis and Rheumatism. 2004;51:763–773
  58. Janse AJ, Sinnema G, Uiterwaal CS, et al. Quality of life in chronic illness: perceptions of parents and paediatricians. Archives of Disease in Childhood. 2005;90:486–491
  59. Sällfors C, Hallberg LR, Fasth A. Well-being in children with juvenile chronic arthritis. Clinical and Experimental Rheumatology. 2004;22:125–130
  60. Neumann L, Buskila D. Quality of life and physical functioning of relatives of fibromyalgia patients. Seminars in Arthritis and Rheumatism. 1997;26:834–839
  61. Press J, Neumann L, Uziel Y, et al. Assessment of quality of life of parents of children with juvenile chronic arthritis. Clinical Rheumatology. 2002;21:280–283
  62. Mullick MS, Nahar JS, Haq SA. Psychiatric morbidity, stressors, impact, and burden in juvenile idiopathic arthritis. Journal of Health Population and Nutrition. 2005;23(2):142–149
  63. Brunner HI, Maker D, Grundland B, Young NL, et al. Preference-based measurement of health-related quality of life (HRQL) in children with chronic musculoskeletal disorders (MSKDs). Medical Decision Making. 2003;23:314–322
  64. Barr RD, Simpson T, Whitton A, et al. Health-related quality of life in survivors of tumours of the central nervous system in childhood-a preference-based approach to measurement in a cross-sectional study. European Journal of Cancer. 1999;35:248–255
  65. Gemke RJ, Bonsel GJ. Reliability and validity of a comprehensive health status measure in a heterogeneous population of children admitted to intensive care. Journal of Clinical Epidemiology. 1996;49:327–333
  66. Vitale MG, Levy DE, Johnson MG, et al. Assessment of quality of life in adolescent patients with orthopaedic problems: are adult measures appropriate?. Journal of Pediatric Orthopedics. 2001;21:622–628
  67. Barron AC, Lee TL, Taylor J, et al. Feasibility and construct validity of the parent willingness-to-pay technique for children with juvenile idiopathic arthritis. Arthritis and Rheumatism. 2004;51:899–908
  68. Griebsch I, Coast J, Brown J. Quality-adjusted life-years quality in pediatric care: a critical review of published cost-utility studies in child health. Pediatrics. 2005;115:600–614

PII: S1521-6942(05)00127-0

doi: 10.1016/j.berh.2005.11.004

Best Practice & Research Clinical Rheumatology
Volume 20, Issue 2 , Pages 223-240 , April 2006