An overview of disparities and interventions in pediatric kidney transplantation worldwide
Abstract
Despite the stated goals of the transplant community and the majority of organ allocation systems, persistent racial disparities in pediatric kidney transplantation exist throughout the world. These disparities are evident in both living and deceased donor kidney transplantation and are independent of any clinical differences between racial groups. The reasons for these persistent disparities are multifactorial, reflecting both patient and provider barriers to care. In this review, we examine the most current findings regarding disparities in pediatric kidney transplantation and consider interventions which may help reduce those disparities.
Keywords
Kidney transplantation Minority health Organ allocation Racial disparities Socioeconomic statusNotes
Acknowledgments
The data reported in the USRDS 2013 report were supplied by the USRDS. The interpretation and reporting of these data are the responsibility of the author(s) and in no way should be seen as an official policy or interpretation of the U.S. government. The data and analyses reported in the 2011 and 2012 Annual Data Report of the U.S. Organ Procurement and Transplantation Network and the SRTR have been supplied by UNOS and the Minneapolis Medical Research Foundation under contract with the U.S. Department of Health and Human Services/Health Resources and Services Administration. The authors alone are responsible for reporting and interpreting these data; the views expressed herein are those of the authors and not necessarily those of the U.S. government. The contents do not represent the views of the Department of Veterans Affairs or the United States Government. The work of Dr. Freeman on this paper was supported by Grant #T32DKK091202 from the National Institute of Diabetes, Digestive and Kidney Disease and for Dr. Myaskovsky by Grant #R01DK081325 from the National Institute of Diabetes, Digestive and Kidney Disease, and Grants #IIR 06-220 and #CIN 13-405 from the Veterans Affairs Health Services Research and Development Service.
References
- 1.Evans RW, Manninen DL, Garrison LP Jr, Hart LG, Blagg CR, Gutman RA, Hull AR, Lowrie EG (1985) The quality of life of patients with end-stage renal disease. N Engl J Med 312:553–559CrossRefPubMedGoogle Scholar
- 2.Hunsicker LG (1999) A survival advantage for renal transplantation. N Engl J Med 341:1762–1763CrossRefPubMedGoogle Scholar
- 3.U.S. Renal Data System (2013) USRDS 2013 annual data report: atlas of chronic kidney disease and end-stage renal disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, BethesdaGoogle Scholar
- 4.Muneeruddin S, Chandar J, Abitbol CL, Seeherunvong W, Freundlich M, Ciancio G, Burke GW, Zilleruelo G (2010) Two decades of pediatric kidney transplantation in a multi-ethnic cohort. Pediatr Transplant 14:667–674CrossRefPubMedGoogle Scholar
- 5.Patzer RE, Sayed BA, Kutner N, McClellan WM, Amaral S (2013) Racial and ethnic differences in pediatric access to preemptive kidney transplantation in the United States. Am J Transplant 13:1769–1781CrossRefPubMedCentralPubMedGoogle Scholar
- 6.Furth SL, Garg PP, Neu AM, Hwang W, Fivush BA, Powe NR (2000) Racial differences in access to the kidney transplant waiting list for children and adolescents with end-stage renal disease. Pediatrics 106:756–761CrossRefPubMedGoogle Scholar
- 7.Tromp WF, Cransberg K, van der Lee JH, Bouts AH, Collard L, Van Damme-Lombaerts R, Godefroid N, Van Hoeck KJ, Koster-Kamphuis L, Lilien MR, Raes A, Ranguelov N, Groothoff JW (2012) Fewer pre-emptive renal transplantations and more rejections in immigrant children compared to native Dutch and Belgian children. Nephrol Dial Transplant 27:2588–2593CrossRefPubMedGoogle Scholar
- 8.Grace BS, Kennedy SE, Clayton PA, McDonald SP (2014) Racial disparities in paediatric kidney transplantation. Pediatr Nephrol 29:125–132CrossRefPubMedGoogle Scholar
- 9.Samuel SM, Foster BJ, Tonelli MA, Nettel-Aguirre A, Soo A, Alexander RT, Crowshoe L, Hemmelgarn BR (2011) Dialysis and transplantation among Aboriginal children with kidney failure. CMAJ 183:E665–E672CrossRefPubMedCentralPubMedGoogle Scholar
- 10.Pitcher GJ, Beale PG, Bowley DM, Hahn D, Thomson PD (2006) Pediatric renal transplantation in a South African teaching hospital: a 20-year perspective. Pediatr Transplant 10:441–448CrossRefPubMedGoogle Scholar
- 11.Pruthi R, O'Brien C, Casula A, Braddon F, Lewis M, Maxwell H, Tse Y, Inward C, Sinha MD (2013) UK renal registry 15th annual report: chapter 4 demography of the UK paediatric renal replacement therapy population in 2011. Nephron Clin Pract 123(suppl 1):81–92PubMedGoogle Scholar
- 12.Watson L, Leone V, Pilkington C, Tullus K, Rangaraj S, McDonagh JE, Gardner-Medwin J, Wilkinson N, Riley P, Tizard J, Armon K, Sinha MD, Ioannou Y, Archer N, Bailey K, Davidson J, Baildam EM, Cleary G, McCann LJ, Beresford MW (2012) Disease activity, severity, and damage in the UK juvenile-onset systemic lupus erythematosus cohort. Arthritis Rheum 64:2356–2365CrossRefPubMedGoogle Scholar
- 13.Hiraki LT, Lu B, Alexander SR, Shaykevich T, Alarcon GS, Solomon DH, Winkelmayer WC, Costenbader KH (2011) End-stage renal disease due to lupus nephritis among children in the US, 1995–2006. Arthritis Rheum 63:1988–1997CrossRefPubMedCentralPubMedGoogle Scholar
- 14.Patzer RE, Amaral S, Klein M, Kutner N, Perryman JP, Gazmararian JA, McClellan WM (2012) Racial disparities in pediatric access to kidney transplantation: does socioeconomic status play a role? Am J Transplant 12:369–378CrossRefPubMedCentralPubMedGoogle Scholar
- 15.Matas AJ, Smith JM, Skeans MA, Thompson B, Gustafson SK, Schnitzler MA, Stewart DE, Cherikh WS, Wainright JL, Snyder JJ, Israni AK, Kasiske BL (2014) OPTN/SRTR 2012 annual data report: kidney. Am J Transplant 14:11–44CrossRefPubMedGoogle Scholar
- 16.Organ Procurement and Transplantation Network (OPTN), Scientific Registry of Transplant Recipients (SRTR) (2012) OPTN / SRTR 2011 annual data report. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, RockvilleGoogle Scholar
- 17.Omoloja A, Mitsnefes M, Talley L, Benfield M, Neu A (2007) Racial differences in graft survival: a report from the North American pediatric renal trials and collaborative studies (NAPRTCS). Clin J Am Soc Nephrol 2:524–528CrossRefPubMedGoogle Scholar
- 18.Flores G, Tomany-Korman SC (2008) Racial and ethnic disparities in medical and dental health, access to care, and use of services in US children. Pediatrics 121:e286–e298CrossRefPubMedGoogle Scholar
- 19.Seikaly MG, Salhab N, Browne R (2005) Patterns and time of initiation of dialysis in US children. Pediatr Nephrol 20:982–988CrossRefPubMedGoogle Scholar
- 20.Furth SL, Hwang W, Neu AM, Fivush BA, Powe NR (2003) Effects of patient compliance, parental education and race on nephrologists' recommendations for kidney transplantation in children. Am J Transplant 3:28–34CrossRefPubMedGoogle Scholar
- 21.Chua AN, Warady BA (2011) Adherence of pediatric patients to automated peritoneal dialysis. Pediatr Nephrol 26:789–793CrossRefPubMedGoogle Scholar
- 22.Zelikovsky N, Schast AP, Palmer J, Meyers KEC (2008) Perceived barriers to adherence among adolescent renal transplant candidates. Pediatr Transplant 12:300–308CrossRefPubMedGoogle Scholar
- 23.van Ryn M (2002) Research on the provider contribution to race/ethnicity disparities in medical care. Med Care 40:I140–I151PubMedGoogle Scholar
- 24.van Ryn M, Burke J (2000) The effect of patient race and socio-economic status on physicians' perceptions of patients. Soc Sci Med 50:813–828CrossRefPubMedGoogle Scholar
- 25.Sabin JA, Rivara FP, Greenwald AG (2008) Physician implicit attitudes and stereotypes about race and quality of medical care. Med Care 46:678–685CrossRefPubMedGoogle Scholar
- 26.Weng FL, Joffe MM, Feldman HI, Mange KC (2005) Rates of completion of the medical evaluation for renal transplantation. Am J Kidney Dis 46:734–745CrossRefPubMedGoogle Scholar
- 27.Myaskovsky L, Almario Doebler D, Posluszny DM, Dew MA, Unruh M, Fried LF, Switzer GE, Kim S, Chang CC, Ramkumar M, Shapiro R (2012) Perceived discrimination predicts longer time to be accepted for kidney transplant. Transplantation 93:423–429CrossRefPubMedCentralPubMedGoogle Scholar
- 28.Kazley AS, Simpson KN, Chavin KD, Baliga P (2012) Barriers facing patients referred for kidney transplant cause loss to follow-up. Kidney Int 82:1018–1023CrossRefPubMedCentralPubMedGoogle Scholar
- 29.Roberts JP, Wolfe RA, Bragg-Gresham JL, Rush SH, Wynn JJ, Distant DA, Ashby VB, Held PJ, Port FK (2004) Effect of changing the priority for HLA matching on the rates and outcomes of kidney transplantation in minority groups. N Engl J Med 350:545–551CrossRefPubMedGoogle Scholar
- 30.Grams ME, Chow EK, Segev DL, Coresh J (2013) Lifetime incidence of CKD stages 3–5 in the United States. Am J Kidney Dis 62:245–252CrossRefPubMedCentralPubMedGoogle Scholar
- 31.Ojo AO, Port FK, Mauger EA, Wolfe RA, Leichtman AB (1995) Relative impact of donor type on renal allograft survival in black and white recipients. Am J Kidney Dis 25:623–628CrossRefPubMedGoogle Scholar
- 32.Gore JL, Danovitch GM, Litwin MS, Pham PTT, Singer JS (2009) Disparities in the utilization of live donor renal transplantation. Am J Transplant 9:1124–1133CrossRefPubMedGoogle Scholar
- 33.Hall EC, James NT, Garonzik Wang JM, Berger JC, Montgomery RA, Dagher NN, Desai NM, Segev DL (2012) Center-level factors and racial disparities in living donor kidney transplantation. Am J Kidney Dis 59:849–857CrossRefPubMedGoogle Scholar
- 34.Amaral S, Patzer RE, Kutner N, McClellan W (2012) Racial disparities in access to pediatric kidney transplantation since share 35. J Am Soc Nephrol 23:1069–1077CrossRefPubMedGoogle Scholar
- 35.Myaskovsky L, Switzer GE, Crowley-Matoka M, Unruh M, DiMartini AF, Dew MA (2007) Psychosocial factors associated with ethnic differences in transplantation. Curr Opin Organ Transplant 12:182–187CrossRefGoogle Scholar
- 36.Lunsford SL, Simpson KS, Chavin KD, Menching KJ, Miles LG, Shilling LM, Smalls GR, Baliga PK (2006) Racial disparities in living kidney donation: is there a lack of willing donors or an excess of medically unsuitable candidates? Transplantation 82:876–881CrossRefPubMedGoogle Scholar
- 37.Waterman AD, Rodrigue JR, Purnell TS, Ladin K, Boulware LE (2010) Addressing racial and ethnic disparities in live donor kidney transplantation: priorities for research and intervention. Semin Nephrol 30:90–98CrossRefPubMedCentralPubMedGoogle Scholar
- 38.Waterman AD, Peipert JD, Hyland SS, McCabe MS, Schenk EA, Liu J (2013) Modifiable patient characteristics and racial disparities in evaluation completion and living donor transplant. Clin J Am Soc Nephrol 8:995–1002CrossRefPubMedCentralPubMedGoogle Scholar
- 39.Heidotting NA, Ahlenstiel T, Kreuzer M, Franke D, Pape L (2012) The influence of low donor age, living related donation and pre-emptive transplantation on end-organ damage based on arterial hypertension after paediatric kidney transplantation. Nephrol Dial Transplant 27:1672–1676CrossRefPubMedGoogle Scholar
- 40.Kramer A, Stel VS, Geskus RB, Tizard EJ, Verrina E, Schaefer F, Heaf JG, Kramar R, Krischock L, Leivestad T, Palsson R, Ravani P, Jager KJ (2012) The effect of timing of the first kidney transplantation on survival in children initiating renal replacement therapy. Nephrol Dial Transplant 27:1256–1264CrossRefPubMedGoogle Scholar
- 41.Matsuda-Abedini M, Al-AlSheikh K, Hurley RM, Matsell DG, Chow J, Carter JE, Lirenman DS (2009) Outcome of kidney transplantation in Canadian Aboriginal children in the province of British Columbia. Pediatr Transplant 13:856–860CrossRefPubMedGoogle Scholar
- 42.Sorof JM, Sullivan EK, Tejani A, Portman RJ (1999) Antihypertensive medication and renal allograft failure: a North American pediatric renal transplant cooperative study report. J Am Soc Nephrol 10:1324–1330PubMedGoogle Scholar
- 43.Goldfarb-Rumyantzev AS, Koford JK, Baird BC, Chelamcharla M, Habib AN, Wang BJ, Lin SJ, Shihab F, Isaacs RB (2006) Role of socioeconomic status in kidney transplant outcome. Clin J Am Soc Nephrol 1:313–322CrossRefPubMedGoogle Scholar
- 44.Shellmer DA, Dabbs AD, Dew MA (2011) Medical adherence in pediatric organ transplantation: what are the next steps? Curr Opin Organ Transplant 16:509–514CrossRefPubMedCentralPubMedGoogle Scholar
- 45.Dew MA, Dabbs AD, Myaskovsky L, Shyu S, Shellmer DA, DiMartini AF, Steel J, Unruh M, Switzer GE, Shapiro R, Greenhouse JB (2009) Meta-analysis of medical regimen adherence outcomes in pediatric solid organ transplantation. Transplantation 88:736–746CrossRefPubMedCentralPubMedGoogle Scholar
- 46.Formica RN Jr, Barrantes F, Asch WS, Bia MJ, Coca S, Kalyesubula R, McCloskey B, Leary T, Arvelakis A, Kulkarni S (2012) A one-day centralized work-up for kidney transplant recipient candidates: a quality improvement report. Am J Kidney Dis 60:288–294CrossRefPubMedGoogle Scholar
- 47.Hall EC, Massie AB, James NT, Garonzik Wang JM, Montgomery RA, Berger JC, Segev DL (2011) Effect of eliminating priority points for HLA-B matching on racial disparities in kidney transplant rates. Am J Kidney Dis 58:813–816CrossRefPubMedGoogle Scholar
- 48.Pape L, Ahlenstiel T, Kanzelmeyer NK (2013) Consequences of the change in Eurotransplant allocation system on kidney allocation in children. Clin Transplant 27:650–651PubMedGoogle Scholar
- 49.Sickand M, Cuerden MS, Klarenbach SW, Ojo AO, Parikh CR, Boudville N, Garg AX (2009) Reimbursing live organ donors for incurred non-medical expenses: a global perspective on policies and programs. Am J Transplant 9:2825–2836CrossRefPubMedCentralPubMedGoogle Scholar
- 50.Lavee J, Ashkenazi T, Stoler A, Cohen J, Beyar R (2013) Preliminary marked increase in the national organ donation rate in Israel following implementation of a new organ transplantation law. Am J Transplant 13:780–785CrossRefPubMedGoogle Scholar
- 51.Kranenburg LW, Zuidema WC, Weimar W, Hilhorst MT, Ijzermans JN, Passchier J, Busschbach JJ (2007) Psychological barriers for living kidney donation: how to inform the potential donors? Transplantation 84:965–971CrossRefPubMedGoogle Scholar
- 52.Boulware LE, Hill-Briggs F, Kraus ES, Melancon JK, Falcone B, Ephraim PL, Jaar BG, Gimenez L, Choi M, Senga M, Kolotos M, Lewis-Boyer L, Cook C, Light L, DePasquale N, Noletto T, Powe NR (2013) Effectiveness of educational and social worker interventions to activate patients' discussion and pursuit of preemptive living donor kidney transplantation: a randomized controlled trial. Am J Kidney Dis 1:476–486CrossRefGoogle Scholar
- 53.DePasquale N, Hill-Briggs F, Darrell L, Boyér LL, Ephraim P, Boulware LE (2012) Feasibility and acceptability of the TALK social worker intervention to improve live kidney transplantation. Health Soc Work 37:234–249CrossRefPubMedCentralPubMedGoogle Scholar
- 54.Rodrigue JR, Cornell DL, Kaplan B, Howard RJ (2008) A randomized trial of a home-based educational approach to increase live donor kidney transplantation: effects in blacks and whites. Am J Kidney Dis 51:663–670CrossRefPubMedGoogle Scholar
- 55.Patzer RE, Perryman JP, Pastan S, Amaral S, Gazmararian JA, Klein M, Kutner N, McClellan WM (2012) Impact of a patient education program on disparities in kidney transplant evaluation. Clin J Am Soc Nephrol 7:648–655CrossRefPubMedGoogle Scholar
- 56.Gordon EJ, Reddy E, Gil S, Feinglass J, Rodde J, Abecassis MM, Caicedo JC (2014) Culturally competent transplant program improves Hispanics' knowledge and attitudes about live kidney donation and transplant. Prog Transplant 24:56–68CrossRefPubMedGoogle Scholar
- 57.Prendergast MB, Gaston RS (2010) Optimizing medication adherence: an ongoing opportunity to improve outcomes after kidney transplantation. Clin J Am Soc Nephrol 5:1305–1311CrossRefPubMedCentralPubMedGoogle Scholar
- 58.Miloh T, Annunziato R, Arnon R, Warshaw J, Parkar S, Suchy FJ, Iyer K, Kerkar N (2009) Improved adherence and outcomes for pediatric liver transplant recipients by using text messaging. Pediatrics 124:e844–e850CrossRefPubMedGoogle Scholar
- 59.Johnson KB, Culpepper D, Scott P, Gordon JS, Harris C (2011) The utility of providing automated medication dose reminders to young children on chronic medication. J Telemed Telecare 17:387–391CrossRefPubMedGoogle Scholar
- 60.Marciel KK, Saiman L, Quittell LM, Dawkins K, Quittner AL (2010) Cell phone intervention to improve adherence: cystic fibrosis care team, patient, and parent perspectives. Pediatr Pulmonol 45:157–164CrossRefPubMedCentralPubMedGoogle Scholar
- 61.MacDonell K, Gibson-Scipio W, Lam P, Naar-King S, Chen X (2012) Text messaging to measure asthma medication use and symptoms in urban African American emerging adults: a feasibility study. J Asthma 49:1092–1096PubMedGoogle Scholar
- 62.Britto MT, Munafo JK, Schoettker PJ, Vockell AL, Wimberg JA, Yi MS (2012) Pilot and feasibility test of adolescent-controlled text messaging reminders. Clin Pediatr 51:114–121CrossRefGoogle Scholar
- 63.Fredericks EM, Dore-Stites D, Well A, Magee JC, Freed GL, Shieck V, James Lopez M (2010) Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatr Transplant 14:944–953CrossRefPubMedCentralPubMedGoogle Scholar
- 64.Ellis DA, Templin TN, Podolski CL, Frey MA, Naar-King S, Moltz K (2008) The parental monitoring of diabetes care scale: development, reliability and validity of a scale to evaluate parental supervision of adolescent illness management. J Adolesc Health 42:146–153CrossRefPubMedGoogle Scholar
- 65.Claxton AJ, Cramer J, Pierce C (2001) A systematic review of the associations between dose regimens and medication compliance. Clin Ther 23:1296–1310CrossRefPubMedGoogle Scholar
- 66.Zhao W, Fakhoury M, Baudouin V, Storme T, Maisin A, Deschenes G, Jacqz-Aigrain E (2013) Population pharmacokinetics and pharmacogenetics of once daily prolonged-release formulation of tacrolimus in pediatric and adolescent kidney transplant recipients. Eur J Clin Pharmacol 69:189–195CrossRefPubMedGoogle Scholar
- 67.Tucker CM, Fennell RS, Pedersen T, Higley BP, Wallack CE, Peterson S (2002) Associations with medication adherence among ethnically different pediatric patients with renal transplants. Pediatr Nephrol 17:251–256CrossRefPubMedGoogle Scholar