Gánh nặng nhân văn và kinh tế của viêm khớp tự phát ở trẻ em trong kỷ nguyên thuốc sinh học

Thierry S, Fautrel B, Lemelle I, Guillemin F. Prevalence and incidence of juvenile idiopathic arthritis: a systematic review. Joint Bone Spine. 2014;81(2):112–7. Petty RE, Southwood TR, Manners P, Baum J, Glass DN, Goldenberg J, et al. International league of associations for rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001. J Rheumatol. 2004;31(2):390–2. Gowdie P. Juvenile Idiopathic Arthritis (2012) [Internet]. 2012 [cited 2015 Jan 22]. Available from: http://www.slideshare.net/Dr_Padmesh/juvenile-idiopathic-arthritis-2012 Martini A. It is time to rethink juvenile idiopathic arthritis classification and nomenclature. Ann Rheum Dis. 2012;71(9):1437–9. Harrold LR, Salman C, Shoor S, Curtis JR, Asgari MM, Gelfand JM, et al. Incidence and prevalence of juvenile idiopathic arthritis among children in a managed care population, 1996–2009. J Rheumatol. 2013;40(7):1218–25. Stoll ML, Cron RQ. Treatment of juvenile idiopathic arthritis: a revolution in care. Pediatr Rheumatol. 2014;12(1):13. Minden K, Niewerth M, Zink A, Seipelt E, Foeldvari I, Girschick H, et al. Long-term outcome of patients with JIA treated with etanercept, results of the biologic register JuMBO. Rheumatol Oxf Engl. 2012;51(8):1407–15. Wallace CA. Current management of juvenile idiopathic arthritis. Best Pract Res Clin Rheumatol. 2006;20(2):279–300. 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 Technol Assess Winch Engl. 2002;6(17):1–43. Ungar WJ, Costa V, Burnett HF, Feldman BM, Laxer RM. The use of biologic response modifiers in polyarticular-course juvenile idiopathic arthritis: a systematic review. Semin Arthritis Rheum. 2013 Jan 18. Donahue KE, Gartlehner G, Jonas DE, Lux LJ, Thieda P, Jonas BL, et al. Systematic review: comparative effectiveness and harms of disease-modifying medications for rheumatoid arthritis. Ann Intern Med. 2008;148(2):124–34. Kemper AR, Van Mater HA, Coeytaux RR, Williams Jr JW, Sanders GD. Systematic review of disease-modifying antirheumatic drugs for juvenile idiopathic arthritis. BMC Pediatr. 2012;12:29. Seid M, Opipari L, Huang B, Brunner HI, Lovell DJ. Disease control and health-related quality of life in juvenile idiopathic arthritis. Arthritis Care Res. 2009;61(3):393–9. Drummond MF. Methods for the economic evaluation of health care programmes. Oxford University Press; 2005. 404 p. Krol M, Brouwer W, Rutten F. Productivity costs in economic evaluations: past, present, future. PharmacoEconomics. 2013;31(7):537–49. Goodrich K, Kaambwa B, Al-Janabi H. The inclusion of informal care in applied economic evaluation: a review. Value Health J Int Soc Pharmacoecon Outcomes Res. 2012;15(6):975–81. Allaire SH, DeNardo BS, Szer IS, Meenan RF, Schaller JG. The economic impacts of juvenile rheumatoid arthritis. J Rheumatol. 1992;19(6):952–5. Palloni A. Reproducing inequalities: luck, wallets, and the enduring effects of childhood health. Demography. 2006;43(4):587–615. Adam T, Evans DB, Koopmanschap MA. Cost-effectiveness analysis: can we reduce variability in costing methods? Int J Technol Assess Health Care. 2003;19(02):407–20. Sleed M, Eccleston C, Beecham J, Knapp M, Jordan A. The economic impact of chronic pain in adolescence: methodological considerations and a preliminary costs-of-illness study. Pain. 2005;119(1–3):183–90. Streisand R, Braniecki S, Tercyak KP, Kazak AE. Childhood illness-related parenting stress: the pediatric inventory for parents. J Pediatr Psychol. 2001;26(3):155–62. Basu A, Meltzer D. Implications of spillover effects within the family for medical cost-effectiveness analysis. J Health Econ. 2005;24(4):751–73. NICE. Guidance on the use of etanercept for the treatment of juvenile idiopathic arthritis | Guidance and guidelines | NICE [Internet]. 2002 [cited 2014 Sep 4]. Available from: http://www.nice.org.uk/Guidance/ta35 NICE. Tocilizumab for the treatment of systemic juvenile idiopathic arthritis | Guidance and guidelines | NICE [Internet]. 2011 [cited 2014 Sep 2]. Available from: http://www.nice.org.uk/Guidance/ta238 American College of Rheuatology. Recommendations for the treatment of juvenile idiopathic arthritis initiation and safety monitoring of therapeutic agents for the treatment of arthritis and systemic features. Atlanta: ACR; 2011. Kemper AR, Coeytaux R, Sanders GD, Van Mater H, Williams JW, Gray RN, et al. Disease-modifying antirheumatic drugs (DMARDs) in children with juvenile idiopathic arthritis (JIA) [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); 2011 [cited 2013 May 1]. Available from: http://www.ncbi.nlm.nih.gov/books/NBK65169/ Sabik LM, Lie RK. Priority setting in health care: lessons from the experiences of eight countries. Int J Equity Health. 2008;7:4. NICE. Guide to the methods of technology appraisal [Internet]. NICE. 2013 [cited 2014 Jan 8]. Available from: http://www.nice.org.uk/ Coffin PO, Sullivan SD. Cost-effectiveness of distributing naloxone to heroin users for lay overdose reversal. Ann Intern Med. 2013;158(1):1–9. Canadian Agency for, Drugs and Technologies, in Health. Guidelines for the Economic Evaluation of Health Technologies: Canada. Ottowa: CADTH; Ungar WJ, Prosser LA, Burnett HF. Values and evidence colliding: health technology assessment in child health. Expert Rev Pharmacoecon Outcomes Res. 2013;13(4):417–9. Sung L, Greenberg ML, Doyle JJ, Young NL, Ingber S, Rubenstein J, et al. Construct validation of the health utilities index and the child health questionnaire in children undergoing cancer chemotherapy. Br J Cancer. 2003;88(8):1185–90. Furlong WJ, Feeny DH, Torrance GW, Barr RD. The Health Utilities Index (HUI) system for assessing health-related quality of life in clinical studies. Ann Med. 2001;33(5):375–84. The University of Sheffield. Publications and Presentations - Paediatric QoL - Measuring & Valuing Health - HEDS - Sections - ScHARR - The University of Sheffield [Internet]. 2014 [cited 2015 Jan 22]. Available from: https://www.shef.ac.uk/scharr/sections/heds/mvh/paediatric/pubandpres Prince FHM, van Suijlekom-Smit LWA. Cost of biologics in the treatment of juvenile idiopathic arthritis: a factor not to be overlooked. Paediatr Drugs. 2013;15(4):271–80. Minden K. What are the costs of childhood-onset rheumatic disease? Best Pract Res Clin Rheumatol. 2006;20(2):223–40. Otten MH, Anink J, Prince FH, Twilt M, Vastert SJ, Cate RT, et al. PReS-FINAL-2146: trends in prescription of biologics and outcomes of juvenile idiopathic arthritis; results of the Dutch national arthritis and biologicals in children register. Pediatr Rheumatol. 2013;11 Suppl 2:158. Butbul Aviel Y, Stremler R, Benseler SM, Cameron B, Laxer RM, Ota S, et al. Sleep and fatigue and the relationship to pain, disease activity and quality of life in juvenile idiopathic arthritis and juvenile dermatomyositis. Rheumatol Oxf Engl. 2011;50(11):2051–60. Békési A, Török S, Kökönyei G, Bokrétás I, Szentes A, Telepóczki G, et al. Health-related quality of life changes of children and adolescents with chronic disease after participation in therapeutic recreation camping program. Health Qual Life Outcomes. 2011;9:43. Prince FHM, de Bekker-Grob EW, Twilt M, van Rossum MAJ, Hoppenreijs EPAH, ten Cate R, et al. An analysis of the costs and treatment success of etanercept in juvenile idiopathic arthritis: results from the Dutch arthritis and biologicals in children register. Rheumatol Oxf Engl. 2011;50(6):1131–6. Ruperto N, Lovell DJ, Li T, Sztajnbok F, Goldenstein-Schainberg C, Scheinberg M, et al. Abatacept improves health-related quality of life, pain, sleep quality, and daily participation in subjects with juvenile idiopathic arthritis. Arthritis Care Res. 2010;62(11):1542–51. Grootenhuis MA, Koopman HM, Verrips EGH, Vogels AGC, Last BF. Health-related quality of life problems of children aged 8–11 years with a chronic disease. Dev Neurorehabil. 2007;10(1):27–33. Norrby U, Nordholm L, Andersson-Gäre B, Fasth A. Health-related quality of life in children diagnosed with asthma, diabetes, juvenile chronic arthritis or short stature. Acta Paediatr Oslo Nor. 1992;95(4):450–6. 2006 Apr. Riddle R, Ryser CN, Morton AA, Sampson JD, Browne RH, Punaro MG, et al. The impact on health-related quality of life from non-steroidal anti-inflammatory drugs, methotrexate, or steroids in treatment for juvenile idiopathic arthritis. J Pediatr Psychol. 2006;31(3):262–71. 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. Rheumatol Oxf Engl. 2004;43(3):325–30. Palermo TM, Kiska R. Subjective sleep disturbances in adolescents with chronic pain: relationship to daily functioning and quality of life. J Pain Off J Am Pain Soc. 2005;6(3):201–7. Selvaag AM, Flatø B, Lien G, Sørskaar D, Vinje O, Førre Ø. Measuring health status in early juvenile idiopathic arthritis: determinants and responsiveness of the child health questionnaire. J Rheumatol. 2003;30(7):1602–10. Klotsche J, Minden K, Thon A, Ganser G, Urban A, Horneff G. Improvement in health-related quality of life for children with juvenile idiopathic arthritis after start of treatment with etanercept. Arthritis Care Res. 2014;66(2):253–62. Lundberg V, Lindh V, Eriksson C, Petersen S, Eurenius E. Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study. Pediatr Rheumatol. 2012;10(1):33. Thornton J, Lunt M, Ashcroft DM, Baildam E, Foster H, Davidson J, et al. Costing juvenile idiopathic arthritis: examining patient-based costs during the first year after diagnosis. Rheumatol Oxf Engl. 2008;47(7):985–90. Haapasaari J, Kautiainen HJ, Isomäki HA, Hakala M. Etanercept does not essentially increase the total costs of the treatment of refractory juvenile idiopathic arthritis. J Rheumatol. 2004;31(11):2286–9. Bernatsky S, Duffy C, Malleson P, Feldman DE, St Pierre Y, Clarke AE. Economic impact of juvenile idiopathic arthritis. Arthritis Rheum. 2007;57(1):44–8. Yucel IK, Seyahi E, Kasapcopur O, Arisoy N. Economic impact of juvenile idiopathic arthritis and familial Mediterranean fever. Rheumatol Int. 2012;32(7):1955–62. Ens A, Lang B, Ramsey S, Stringer E, Huber AM. The financial burden of juvenile idiopathic arthritis: a Nova Scotia experience. Pediatr Rheumatol Online J. 2013;11(1):24. The Campbell and Cochrane Economics Methods Group. CCEMG - EPPI-Centre Cost Converter [Internet]. 2014. Available from: http://eppi.ioe.ac.uk/costconversion/Default.aspx Bernatsky S, Rosenberg AM, Oen KG, Duffy CM, Ramsey-Goldman R, Labrecque J, et al. Malignancies in juvenile idiopathic arthritis: a preliminary report. J Rheumatol. 2011;38(4):760–3. Short ME, Goetzel RZ, Pei X, Tabrizi MJ, Ozminkowski RJ, Gibson TB, et al. How accurate are self-reports? analysis of self-reported health care utilization and absence when compared with administrative data. J Occup Environ Med. 2009;51(7):786–96. Lairson DR, Basu R, Begley CE, Reynolds T. Concordance of survey and billing data in a study of outpatient healthcare cost and utilization among epilepsy patients. Epilepsy Res. 2009;87(1):59–69. Mann C. Observational research methods. Research design II: cohort, cross sectional, and case-control studies. Emerg Med J EMJ. 2003;20(1):54–60. Zhang W, Gignac MM, Beaton D, Tang K, Anis AH. Productivity loss due to presenteeism among patients with arthritis: estimates from 4 instruments. J Rheumatol. 2010;37(9):1805–14.