SpringerLink
Log in

Safeguarding children and young people requiring kidney replacement therapy: challenges and potential opportunities

  • Educational Review
  • Published:
Pediatric Nephrology Aims and scope Submit manuscript

Abstract

Kidney replacement therapy (KRT) makes considerable physical and psychological demands on children, young people and their families. The impact can be wide-ranging, affecting education, employment, mental health, finances and relationships for both child and caregiver. It is vitally important for those working with these families to recognise the psychosocial challenges they face and to know the range of interventions available. This article explores the psychosocial impact of KRT, considering opportunities to minimise risk and optimise outcomes for children, young people and their families.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or Ebook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price includes VAT (Germany)

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. United Nations Commission on Human Rights (1990) The United Nations Convention on the Rights of the Child. Geneva

  2. Her Majesty’s Government (2018) Working together to safeguard children: a guide to inter-agency working to safeguard and promote the welfare of children. The Stationery Office, London

    Google Scholar 

  3. Wildeman C, Emanuel N, Leventhal J, Putnam-Hornstein E et al (2014) The prevalence of confirmed maltreatment among US children 2004 to 2011. JAMA Pediatr 168:706–713. https://doi.org/10.1001/jamapediatrics.2014.410

    Article  PubMed  PubMed Central  Google Scholar 

  4. Chen K, Didsbury M, van Zwieten A, Howell M et al (2018) Neurocognitive and educational outcomes in children and adolescents with CKD: a systematic review and meta-analysis. Clin J Am Soc Nephrol 13:387–397. https://doi.org/10.2215/CJN.09650917

    Article  PubMed  PubMed Central  Google Scholar 

  5. Tjaden LA, Maurice-Stam H, Grootenhuis MA, Jager KJ et al (2016) Impact of renal replacement therapy in childhood on long-term socioprofessional outcomes: a 30-year follow-up study. J Pediatr 171:189–95.e1-2. https://doi.org/10.1016/j.jpeds.2015.12.017

    Article  PubMed  Google Scholar 

  6. Mellerio H, Alberti C, Labèguerie M, Andriss B et al (2014) Adult social and professional outcomes of pediatric renal transplant recipients. Transplantation 97:196–205. https://doi.org/10.1097/TP.0b013e3182a74de2

    Article  PubMed  Google Scholar 

  7. Tjaden L, Vogelzan J, Jager K, van Stralen KJ et al (2014) Long-term quality of life and social outcome of childhood end-stage renal disease. J Pediatr 165:336–342.e1. https://doi.org/10.1016/j.jpeds.2014.04.013

    Article  PubMed  Google Scholar 

  8. Hothi H, Stronach L, Harvey E (2013) Home haemodialysis. Pediatr Nephrol 28:721–730. https://doi.org/10.1007/s00467-012-2322-6

    Article  PubMed  Google Scholar 

  9. Kiliś-Pstrusińska K, Wasilewska A, Medyńska A, Bałasz-Chmielewska I et al (2013) Psychosocial aspects of children and families of children treated with automated peritoneal dialysis. Pediatr Nephrol 28:2157–2167. https://doi.org/10.1007/s00467-013-2532-6

    Article  PubMed  PubMed Central  Google Scholar 

  10. Bello A, Sangweni B, Mudi A, Khumalo T et al (2018) the financial cost incurred by families of children on long-term dialysis. Perit Dial Int 38:14–17. https://doi.org/10.3747/pdi.2017.00092

    Article  PubMed  Google Scholar 

  11. Tong A, Lowe A, Sainsbury P, Craig J (2008) Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics 121:349–360. https://doi.org/10.1542/peds.2006-3470

    Article  PubMed  Google Scholar 

  12. Kim H, Drake B, Jonson-Reid M (2020) Longitudinal understanding of child maltreatment report risks. Child Abuse Negl 104:104467. https://doi.org/10.1016/j.chiabu.2020.104467

    Article  PubMed  PubMed Central  Google Scholar 

  13. Tong A, Henning P, Wong G, McTaggart S et al (2013) Experiences and perspectives of adolescents and young adults with advanced CKD. Am J Kidney Dis 61:375–384. https://doi.org/10.1053/j.ajkd.2012.09.024

    Article  PubMed  Google Scholar 

  14. Rodriguez Cuellar CI, García de la Puente S, Hernández Moraria J, Bojórquez Ochoa A et al (2019) High depression rates among pediatric renal replacement therapy patients: a cross-sectional study. Pediatr Transplant 23:e13591. https://doi.org/10.1111/petr.13591

    Article  PubMed  Google Scholar 

  15. Kogon A, Kim J, Laney N, Radcliffe J et al (2019) Depression and neurocognitive dysfunction in pediatric and young adult chronic kidney disease. Pediatr Nephrol 34:175–182. https://doi.org/10.1007/s00467-019-04265-z

    Article  Google Scholar 

  16. Thys K, Schwering K-L, Siebelink M, Dobbels F et al (2015) Psychosocial impact of pediatric living-donor kidney and liver transplantation on recipients, donors and the family: a systematic review. Transpl Int 28:270–280. https://doi.org/10.1111/tri.12481

    Article  PubMed  Google Scholar 

  17. Endén K, Tainio J, Jalanko H, Jahnukainen K, Jahnukainen T (2018) Lower quality of life in young men after pediatric kidney transplantation when compared to healthy controls and survivors of childhood leukemia-a cross-sectional study. Transpl Int 31:157–164. https://doi.org/10.1111/tri.13040

    Article  PubMed  Google Scholar 

  18. Turner H, Vanderminder J, Finkelhor D, Hamby S, Shattuck A (2011) Disability and victimization in a national sample of children and youth. Child Maltreat 16:275–286. https://doi.org/10.1177/1077559511427178

    Article  PubMed  Google Scholar 

  19. Diseth TH, Tangeraas T, Reinfjell T, Bjerre A (2011) Kidney transplantation in childhood: mental health and quality of life of children and caregivers. Pediatr Nephrol 26:1881–1892. https://doi.org/10.1007/s00467-011-1887-9

    Article  PubMed  PubMed Central  Google Scholar 

  20. Gomes C, Oliveira L, Ferreira R, Simão C (2017) Sleep disturbance in pediatric patients on automated peritoneal dialysis. Sleep Med 32:87–91. https://doi.org/10.1016/j.sleep.2016.12.010

    Article  PubMed  Google Scholar 

  21. Geary D, Piva E, Tyrrell J, Gajaria M et al (2005) Home nocturnal hemodialysis in children. J Pediatr 147:383–387. https://doi.org/10.1016/j.jpeds.2005.04.034

    Article  PubMed  Google Scholar 

  22. Liel C, Ulrich S, Lorenz S, Eickhorst A et al (2020) Risk factors for child abuse, neglect and exposure to intimate partner violence in early childhood: findings in a representative cross-sectional sample in Germany. Child Abuse Negl 106:104487. https://doi.org/10.1016/j.chiabu.2020.104487

    Article  PubMed  Google Scholar 

  23. Ashoor I, Aviles D, Pasternak R, Vehaskari V (2015) Sexual transmitted infections in pediatric renal transplant recipients: time to take notice! Pediatr Transplant 19:584–587. https://doi.org/10.1111/petr.12554

    Article  PubMed  Google Scholar 

  24. Ashoor I, Dharnidharka V (2015) Sexual transmitted infection screening and reproductive health counselling in adolescent renal transplant recipients: perceptions and practice patterns. a study from the Midwest Pediatric Nephrology Consortium. Pediatr Transplant 19:704–708. https://doi.org/10.1111/petr.12579

    Article  PubMed  Google Scholar 

  25. Sarayani A, Albogami Y, Elkhider M, Hincapie-Castillo J et al (2020) Comparative effectiveness of risk mitigation strategies to prevent fetal exposure to mycophenolate. BMJ Qual Saf 29:636–644. https://doi.org/10.1136/bmjqs-2019-010098

    Article  PubMed  Google Scholar 

  26. Dobbels F, Decorte A, Roskams A, Van Damme-Lombaerts R (2010) Health-related quality of life, treatment adherence, symptom experience and depression in adolescent renal transplant patients. Pediatr Transplant 14:216–223. https://doi.org/10.1111/j.1399-3046.2009.01197

    Article  PubMed  Google Scholar 

  27. Francis A, Didsbury M, van Zwieten A, Chen K et al (2019) Quality of life of children and adolescents with chronic kidney disease: a cross-sectional study. Arch Dis Child 104:134–140. https://doi.org/10.1136/archdischild-2018-314934

    Article  PubMed  Google Scholar 

  28. Clave S, Tsimaratos M, Boucekine M, Ranchin B et al (2019) Quality of life in adolescents with chronic kidney disease who initiate haemodialysis treatment. BMC Nephrol 20:163. https://doi.org/10.1186/s12882-019-1365-3

    Article  PubMed  PubMed Central  Google Scholar 

  29. Nicholas D, Picone G, Selkirk E (2011) The lived experiences of children and adolescents with end-stage renal disease. Qual Health Res 21:162–173. https://doi.org/10.1177/1049732310382789

    Article  PubMed  Google Scholar 

  30. Wightman A, Zimmerman CT, Neul S, Lepere K et al (2019) Caregiver experience in pediatric dialysis. Pediatrics 43:e20182102. https://doi.org/10.1542/peds.2018-2102

    Article  Google Scholar 

  31. Tong A, Lowe A, Sainsbury P, Craig JC (2010) Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Child Care Health Dev 36:549–557. https://doi.org/10.1111/j.1365-2214.2010.01067.x

    Article  CAS  PubMed  Google Scholar 

  32. Anthony SJ, Annunziato RA, Fairey E, Kelly VL et al (2014) Waiting for transplant: physical, psychosocial, and nutritional status considerations for pediatric candidates and implications for care. J Pediatr Transplant 18:423–434. https://doi.org/10.1111/petr.12305

    Article  Google Scholar 

  33. Delucchi A, Gutierrez H, Arrellano P, Slater C et al (2008) Factors that influence nonadherence in immunosuppressant treatment in pediatric transplant recipients: a proposal for an educational strategy. Transplant Proc 40:3241–3243. https://doi.org/10.1016/j.transproceed.2008.03.125

    Article  CAS  PubMed  Google Scholar 

  34. Holbrook H, Hudziak J (2020) Risk factors that predict longitudinal patterns of substantiated and unsubstantiated maltreatment reports. Child Abuse Negl 99:104279. https://doi.org/10.1016/j.chiabu.2019.104279

    Article  PubMed  Google Scholar 

  35. Menon S, Valentini R, Kapur G, Layfield S, Mattoo T (2009) Effectiveness of a multidisciplinary clinic in managing children with chronic kidney disease. Clin J Am Soc Nephrol 4:1170–1175. https://doi.org/10.2215/CJN.05791108

    Article  PubMed  PubMed Central  Google Scholar 

  36. Watson A, Hayes W, Vondrak K, Ariceta G et al (2013) Factors influencing choice of renal replacement therapy in European paediatric nephrology units. Pediatr Nephrol 28:2361–2368. https://doi.org/10.1007/s00467-013-2555

    Article  PubMed  Google Scholar 

  37. Crews DC, Bello AK, Saadi G (2019) Burden, access and disparities in kidney disease. Nephrol Dial Transplant 34:371–376. https://doi.org/10.1093/ndt/gfy371

    Article  PubMed  Google Scholar 

  38. Prikhodina L, Ehrich J, Shroff R, Topaloglu R et al (2020) The European Society for Paediatric Nephrology study of pediatric renal care in Europe: comparative analysis 1998-2017. Pediatr Nephrol 35:103–111. https://doi.org/10.1007/s00467-019-04378-5

    Article  PubMed  Google Scholar 

  39. Zurowska A, Fischbach M, Watson A, Edefonti A et al (2013) Clinical practice recommendations for the care of infants with stage 5 chronic kidney disease (CKD5). Pediatr Nephrol 28:1739–1748. https://doi.org/10.1007/s00467-012-2300-z

    Article  PubMed  Google Scholar 

  40. Freeman MA, Myaskovsky L (2015) An overview of disparities and interventions in pediatric kidney transplantation worldwide. Pediatr Nephrol 30:1077–1086. https://doi.org/10.1007/s00467-014-2879-3

    Article  PubMed  Google Scholar 

  41. Francis A, Didsbury M, Lim W, Kim S et al (2016) The impact of socioeconomic status and geographic remoteness on access to pre-emptive kidney transplantation and transplant outcomes among children. Pediatr Nephrol 31:1011–1019. https://doi.org/10.1007/s00467-015-3279-z

    Article  PubMed  Google Scholar 

  42. Chesnaye N, Schaefer F, Bonthuis M, Holman R et al (2017) Mortality risk disparities in children receiving chronic renal replacement therapy for the treatment of end-stage renal disease across Europe: an ESPN-ERA/EDTA registry analysis. Lancet 389:2128–2137. https://doi.org/10.1016/S0140-6736(17)30063-6

    Article  PubMed  Google Scholar 

  43. Chandler A, Beavers J, Whit Hall R (2020) Telemedicine in pediatrics: possibilities and pitfalls. Pediatr Rev 41:376–378. https://doi.org/10.1542/pir.2019-0171

    Article  PubMed  Google Scholar 

  44. Krissberg JR, Sutherland SM, Chamberlain LJ, Wise PH (2020) Policy in pediatric nephrology: successes, failures, and the impact on disparities. Pediatr Nephrol. https://doi.org/10.1007/s00467-020-04755-5

  45. Eke FU, Ladapo TA, Okpere AN, Olatise O et al (2020) The current status of kidney transplantation in Nigerian children: still awaiting light at the end of the tunnel. Pediatr Nephrol. https://doi.org/10.1007/s00467-020-04753-7

  46. Sever MS, Sever L, Vanholder R (2020) Disasters, children and the kidneys. Pediatr Nephrol 35:1381–1393. https://doi.org/10.1007/s00467-019-04310-x

    Article  PubMed  Google Scholar 

  47. Neitzer A, Sun S, Doss S, Moran J, Schiller B (2012) Beck Depression Inventory-Fast Screen (BDI-FS): an efficient tool for depression screening in patients with end-stage renal disease. Hemodial Int 16:207–213. https://doi.org/10.1111/j.1542-4758.2012.00663.x

    Article  PubMed  Google Scholar 

  48. Marker A, Patton S, McDonough R, Feingold H et al (2019) Implementing clinic-wide depression screening for pediatric diabetes: an initiative to improve healthcare processes. Pediatr Diabetes 20:964–973. https://doi.org/10.1111/pedi.12886

    Article  PubMed  PubMed Central  Google Scholar 

  49. Iturralde E, Adams R, Barley RC, Bensen R et al (2017) Implementation of depression screening and global health assessment in pediatric subspecialty clinics. Adolesc Health 61:591–598. https://doi.org/10.1016/j.jadohealth.2017.05.030

    Article  Google Scholar 

  50. Alegria M, Vallas M, Pumariega A (2010) Racial and ethnic disparities in pediatric mental health. Child Adolesc Psychiatr Clin N Am 19:759–774. https://doi.org/10.1016/j.chc.2010.07.001

    Article  PubMed  PubMed Central  Google Scholar 

  51. Spener Zenlea I, Mednick L, Rein J, Quinn M et al (2014) Routine behavioral and mental health screening in young children with type 1 diabetes mellitus. Pediatr Diabetes 15:384–388. https://doi.org/10.1111/pedi.12099

    Article  Google Scholar 

  52. Fisher E, Law E, Dudeney J, Eccleston C, Palermo T (2019) Psychological therapies (remotely delivered) for the management of chronic and recurrent pain in children and adolescents. Cochrane Database Syst 4(4):CD011118. https://doi.org/10.1002/14651858.CD011118.pub3

    Article  Google Scholar 

  53. Leong K, Ong T, Foong Y-W, Wong Y-P et al (2020) Multidisciplinary management of chronic atopic dermatitis in children and adolescents: a prospective pilot study. J Dermatol Treat 23:1–7. https://doi.org/10.1080/09546634.2020.1782321

    Article  Google Scholar 

  54. Knight A, Vickery M, Faust L, Muscal E et al (2019) Gaps in mental health care for youth with rheumatologic conditions: a mixed methods study of perspectives from behavioral health providers. Arthritis Care Res (Hoboken) 71:591–601. https://doi.org/10.1002/acr.23683

    Article  Google Scholar 

  55. Sansom-Daly U, Peate M, Wakefield C, Bryant R et al (2018) A systematic review of psychological interventions for adolescents and young adults living with chronic illness. Health Psychol 31:380–393. https://doi.org/10.1037/a0025977

    Article  Google Scholar 

  56. Kaye A, Lybrand S, Chew W (2018) Assessment and management of psychosocial needs: social work utilisation in comprehensive cleft team care. Cleft Palate Craniofac J 55:1081–1091. https://doi.org/10.1177/1055665618760620

    Article  PubMed  Google Scholar 

  57. Hsu L, Green N, Donnell Ivy E, Neunert C et al (2016) Community health workers as support for sickle cell care. Am J Prev Med 51(1 Suppl 1):S87–S98. https://doi.org/10.1016/j.amepre.2016.01.016

    Article  PubMed  PubMed Central  Google Scholar 

  58. DaCruz K, Cousino M, Smith T, Bilhartz J et al (2019) Educational needs in families of pediatric liver and kidney transplant recipients: a quality improvement project. Pediatr Transplant 23:e13412. https://doi.org/10.1111/petr.13412

    Article  PubMed  Google Scholar 

  59. Javalkar K, Fenton N, Cohen S, Ferris M (2014) Socioecologic factors as predictors of readiness for self-management and transition, medication adherence and health care utilization among adolescents and young adults with chronic kidney disease. Prev Chronic Dis 11:E117. https://doi.org/10.5888/pcd11.140072

    Article  PubMed  PubMed Central  Google Scholar 

  60. Dallimore D, Neukirchinger B, Noyes J (2018) Why is transition between child and adult services a dangerous time for young people with chronic kidney disease? A mixed-method systematic review. PLoS One 13:e0201098. https://doi.org/10.1371/journal.pone.0201098

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  61. Zelikovsky N, Schast A, Palmer J, Meyers K (2008) Perceived barriers to adherence amongst adolescent renal transplant candidates. Pediatr Transplant 12:300–308. https://doi.org/10.1111/j.1399-3046.2007.00886.x

    Article  PubMed  Google Scholar 

  62. Harden P, Walsh G, Bandler N, Bradley S et al (2012) Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ 344:e3718. https://doi.org/10.1136/bmj.e3718

    Article  CAS  PubMed  Google Scholar 

  63. Walker R, Naicker D, Kara T, Palmer S (2019) Children’s experiences and expectations of kidney transplantation: a qualitative interview study. Nephrology (Carlton) 24:647–653. https://doi.org/10.1111/nep.13405

    Article  Google Scholar 

Download references

Acknowledgements

We are grateful to Professor Lesley Rees for her helpful review and comments on an early draft of this paper.

Availability of data and material

Not applicable.

Code availability

Not applicable.

Author information

Authors and Affiliations

  1. Department of Nephrology, Great Ormond Street Hospital, London, UK

    Hannah Jacob & Matko Marlais

Authors
  1. Hannah Jacob
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Matko Marlais
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

HJ and MM conceived the initial idea. HJ prepared the first draft of the manuscript and MM reviewed it.

Corresponding author

Correspondence to Hannah Jacob.

Ethics declarations

Ethics approval

Not required.

Consent to participate

Not required.

Consent for publication

Not required.

Competing interests

The authors declare no competing interests.

Additional information

Answers to multiple choice questions

1. B; 2. D; 3. E; 4. B; 5. A

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Jacob, H., Marlais, M. Safeguarding children and young people requiring kidney replacement therapy: challenges and potential opportunities. Pediatr Nephrol 37, 1007–1015 (2022). https://doi.org/10.1007/s00467-021-05133-5

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00467-021-05133-5

Keywords

Search

Navigation