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Published in: Pediatric Nephrology 12/2023

10-04-2023 | Kidney Transplantation | Review

Preparing for kidney replacement therapy in pediatric advanced CKD: a review of literature and defining a multi-disciplinary clinical approach to patient-caregiver education

Authors: Rachel Millner, Brendan Crawford, Saritha Ranabothu, Richard Blaszak

Published in: Pediatric Nephrology | Issue 12/2023

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Abstract

Pediatric patients with progressive chronic kidney disease (CKD) approaching kidney replacement therapy (KRT) make up a small population but carry significant morbidity and mortality. Patients and caregivers require comprehensive kidney failure education to ensure a smooth start to KRT. Choice of KRT modality can be influenced by medical comorbidities, patient/caregiver comprehension, and comfort with a particular modality, social and economic factors, and/or implicit bias of the health care team. As KRT modality can influence morbidity, mortality, and quality of life, we created a pediatric advanced CKD clinic to provide comprehensive KRT education and to promote informed decision-making for our advanced CKD patients and their caregivers.
Literature
1.
go back to reference Ng DK, Matheson MB, Warady BA, Mendley SR, Furth SL, Munoz A (2019) Incidence of initial renal replacement therapy over the course of kidney disease in children. Am J Epidemiol 188:2156–2164PubMedPubMedCentral Ng DK, Matheson MB, Warady BA, Mendley SR, Furth SL, Munoz A (2019) Incidence of initial renal replacement therapy over the course of kidney disease in children. Am J Epidemiol 188:2156–2164PubMedPubMedCentral
2.
go back to reference Warady BA, Abraham AG, Schwartz GJ, Wong CS, Munoz A, Betoko A, Mitsnefes M, Kaskel F, Greenbaum LA, Mak RH, Flynn J, Moxey-Mims MM, Furth S (2015) Predictors of rapid progression of glomerular and nonglomerular kidney disease in children and adolescents: the chronic kidney disease in children (CKiD) Cohort. Am J Kidney Dis 65:878–888PubMedPubMedCentral Warady BA, Abraham AG, Schwartz GJ, Wong CS, Munoz A, Betoko A, Mitsnefes M, Kaskel F, Greenbaum LA, Mak RH, Flynn J, Moxey-Mims MM, Furth S (2015) Predictors of rapid progression of glomerular and nonglomerular kidney disease in children and adolescents: the chronic kidney disease in children (CKiD) Cohort. Am J Kidney Dis 65:878–888PubMedPubMedCentral
3.
go back to reference Neul SK, Minard CG, Currier H, Goldstein SL (2013) Health-related quality of life functioning over a 2-year period in children with end-stage renal disease. Pediatr Nephrol 28:285–293PubMed Neul SK, Minard CG, Currier H, Goldstein SL (2013) Health-related quality of life functioning over a 2-year period in children with end-stage renal disease. Pediatr Nephrol 28:285–293PubMed
4.
go back to reference Mitsnefes MM, Laskin BL, Dahhou M, Zhang X, Foster BJ (2013) Mortality risk among children initially treated with dialysis for end-stage kidney disease, 1990–2010. JAMA 309:1921–1929PubMedPubMedCentral Mitsnefes MM, Laskin BL, Dahhou M, Zhang X, Foster BJ (2013) Mortality risk among children initially treated with dialysis for end-stage kidney disease, 1990–2010. JAMA 309:1921–1929PubMedPubMedCentral
5.
go back to reference Kharbanda K, Iyasere O, Caskey F, Marlais M, Mitra S (2021) Commentary on the NICE guideline on renal replacement therapy and conservative management. BMC Nephrol 22:282PubMedPubMedCentral Kharbanda K, Iyasere O, Caskey F, Marlais M, Mitra S (2021) Commentary on the NICE guideline on renal replacement therapy and conservative management. BMC Nephrol 22:282PubMedPubMedCentral
6.
go back to reference Winnicki E, McCulloch CE, Mitsnefes MM, Furth SL, Warady BA, Ku E (2018) Use of the kidney failure risk equation to determine the risk of progression to end-stage renal disease in children with chronic kidney disease. JAMA Pediatr 172:174–180PubMed Winnicki E, McCulloch CE, Mitsnefes MM, Furth SL, Warady BA, Ku E (2018) Use of the kidney failure risk equation to determine the risk of progression to end-stage renal disease in children with chronic kidney disease. JAMA Pediatr 172:174–180PubMed
8.
go back to reference Hundemer GL, Tangri N, Sood MM, Ramsay T, Bugeja A, Brown PA, Clark EG, Biyani M, White CA, Akbari A (2020) Performance of the kidney failure risk equation by disease etiology in advanced CKD. Clin J Am Soc Nephrol 15:1424–1432PubMedPubMedCentral Hundemer GL, Tangri N, Sood MM, Ramsay T, Bugeja A, Brown PA, Clark EG, Biyani M, White CA, Akbari A (2020) Performance of the kidney failure risk equation by disease etiology in advanced CKD. Clin J Am Soc Nephrol 15:1424–1432PubMedPubMedCentral
9.
go back to reference Ng DK, Xu Y, Hogan J, Saland JM, Greenbaum LA, Furth SL, Warady BA, Wong CS (2020) Timing of patient-reported renal replacement therapy planning discussions by disease severity among children and young adults with chronic kidney disease. Pediatr Nephrol 35:1925–1933PubMedPubMedCentral Ng DK, Xu Y, Hogan J, Saland JM, Greenbaum LA, Furth SL, Warady BA, Wong CS (2020) Timing of patient-reported renal replacement therapy planning discussions by disease severity among children and young adults with chronic kidney disease. Pediatr Nephrol 35:1925–1933PubMedPubMedCentral
10.
go back to reference Knight RJ, Teeter LD, Graviss EA, Patel SJ, DeVos JM, Moore LW, Gaber AO (2015) Barriers to preemptive renal transplantation: a single center questionnaire study. Transplantation 99:576–579PubMed Knight RJ, Teeter LD, Graviss EA, Patel SJ, DeVos JM, Moore LW, Gaber AO (2015) Barriers to preemptive renal transplantation: a single center questionnaire study. Transplantation 99:576–579PubMed
11.
go back to reference Steinberg Christofferson E, Ruzicka EB, Bolt M, Lyons E, Wachs M, Buchanan CL, Schmiege SJ, Monnin K (2022) Understanding disparities and barriers associated with pediatric transplant evaluation and time to listing: moving toward a more comprehensive picture. Pediatr Transplant 26:e14182PubMed Steinberg Christofferson E, Ruzicka EB, Bolt M, Lyons E, Wachs M, Buchanan CL, Schmiege SJ, Monnin K (2022) Understanding disparities and barriers associated with pediatric transplant evaluation and time to listing: moving toward a more comprehensive picture. Pediatr Transplant 26:e14182PubMed
12.
go back to reference Green JA, Boulware LE (2016) Patient education and support during CKD transitions: when the possible becomes probable. Adv Chronic Kidney Dis 23:231–239PubMed Green JA, Boulware LE (2016) Patient education and support during CKD transitions: when the possible becomes probable. Adv Chronic Kidney Dis 23:231–239PubMed
14.
go back to reference Bolton WK; Renal Physicians Association (2003) Renal physicians association clinical practice guideline: appropriate patient preparation for renal replacement therapy: guideline number 3. J Am Soc Nephrol 14:1406–1410 Bolton WK; Renal Physicians Association (2003) Renal physicians association clinical practice guideline: appropriate patient preparation for renal replacement therapy: guideline number 3. J Am Soc Nephrol 14:1406–1410
16.
go back to reference Porter E, Watson D, Bargman JM (2013) Education for patients with progressive CKD and acute-start dialysis. Adv Chronic Kidney Dis 20:302–310PubMed Porter E, Watson D, Bargman JM (2013) Education for patients with progressive CKD and acute-start dialysis. Adv Chronic Kidney Dis 20:302–310PubMed
17.
18.
go back to reference Kossmann RJ (2011) From CKD to ESRD: a tale of two transitions. Adv Chronic Kidney Dis 18:439–442PubMed Kossmann RJ (2011) From CKD to ESRD: a tale of two transitions. Adv Chronic Kidney Dis 18:439–442PubMed
19.
go back to reference Mahmoud A, Said MH, Dawahra M, Hadj-Aissa A, Schell M, Faraj G, Long D, Parchoux B, Martin X, Cochat P (1997) Outcome of preemptive renal transplantation and pretransplantation dialysis in children. Pediatr Nephrol 11:537–541PubMed Mahmoud A, Said MH, Dawahra M, Hadj-Aissa A, Schell M, Faraj G, Long D, Parchoux B, Martin X, Cochat P (1997) Outcome of preemptive renal transplantation and pretransplantation dialysis in children. Pediatr Nephrol 11:537–541PubMed
20.
go back to reference Sacca E, Hazza I (2006) Pre-emptive pediatric renal transplantation. Saudi J Kidney Dis Transpl 17:549–558PubMed Sacca E, Hazza I (2006) Pre-emptive pediatric renal transplantation. Saudi J Kidney Dis Transpl 17:549–558PubMed
21.
go back to reference Offner G, Hoyer PF, Meyer B, Pichlmayr R, Brodehl J (1993) Pre-emptive renal transplantation in children and adolescents. Transpl Int 6:125–128PubMed Offner G, Hoyer PF, Meyer B, Pichlmayr R, Brodehl J (1993) Pre-emptive renal transplantation in children and adolescents. Transpl Int 6:125–128PubMed
22.
go back to reference Amaral S, Sayed BA, Kutner N, Patzer RE (2016) Preemptive kidney transplantation is associated with survival benefits among pediatric patients with end-stage renal disease. Kidney Int 90:1100–1108PubMedPubMedCentral Amaral S, Sayed BA, Kutner N, Patzer RE (2016) Preemptive kidney transplantation is associated with survival benefits among pediatric patients with end-stage renal disease. Kidney Int 90:1100–1108PubMedPubMedCentral
23.
go back to reference Prezelin-Reydit M, Madden I, Macher MA, Salomon R, Sellier-Leclerc AL, Roussey G, Lahoche A, Garaix F, Decramer S, Ulinski T, Fila M, Dunand O, Merieau E, Pongas M, Zaloszyc A, Baudouin V, Berard E, Couchoud C, Leffondre K, Harambat J (2022) Preemptive kidney transplantation is associated with transplantation outcomes in children: results from the French kidney replacement therapy registry. Transplantation 106:401–411PubMed Prezelin-Reydit M, Madden I, Macher MA, Salomon R, Sellier-Leclerc AL, Roussey G, Lahoche A, Garaix F, Decramer S, Ulinski T, Fila M, Dunand O, Merieau E, Pongas M, Zaloszyc A, Baudouin V, Berard E, Couchoud C, Leffondre K, Harambat J (2022) Preemptive kidney transplantation is associated with transplantation outcomes in children: results from the French kidney replacement therapy registry. Transplantation 106:401–411PubMed
24.
go back to reference Chua A, Cramer C, Moudgil A, Martz K, Smith J, Blydt-Hansen T, Neu A, Dharnidharka VR; NAPRTCS Investigators (2019) Kidney transplant practice patterns and outcome benchmarks over 30 years: the 2018 report of the NAPRTCS. Pediatr Transplant 23:e13597PubMed Chua A, Cramer C, Moudgil A, Martz K, Smith J, Blydt-Hansen T, Neu A, Dharnidharka VR; NAPRTCS Investigators (2019) Kidney transplant practice patterns and outcome benchmarks over 30 years: the 2018 report of the NAPRTCS. Pediatr Transplant 23:e13597PubMed
25.
go back to reference Fine RN, Tejani A, Sullivan EK (1994) Pre-emptive renal transplantation in children: report of the North American Pediatric Renal Transplant Cooperative Study (NAPRTCS). Clin Transplant 8:474–478PubMed Fine RN, Tejani A, Sullivan EK (1994) Pre-emptive renal transplantation in children: report of the North American Pediatric Renal Transplant Cooperative Study (NAPRTCS). Clin Transplant 8:474–478PubMed
26.
go back to reference Smith JM, Stablein DM, Munoz R, Hebert D, McDonald RA (2007) Contributions of the transplant registry: the 2006 Annual Report of the North American Pediatric Renal Trials and Collaborative Studies (NAPRTCS). Pediatr Transplant 11:366–373PubMed Smith JM, Stablein DM, Munoz R, Hebert D, McDonald RA (2007) Contributions of the transplant registry: the 2006 Annual Report of the North American Pediatric Renal Trials and Collaborative Studies (NAPRTCS). Pediatr Transplant 11:366–373PubMed
27.
go back to reference Hogan J, Ranchin B, Fila M, Harambat J, Krid S, Vrillon I, Roussey G, Fischbach M, Couchoud C (2017) Effect of center practices on the choice of the first dialysis modality for children and young adults. Pediatr Nephrol 32:659–667PubMed Hogan J, Ranchin B, Fila M, Harambat J, Krid S, Vrillon I, Roussey G, Fischbach M, Couchoud C (2017) Effect of center practices on the choice of the first dialysis modality for children and young adults. Pediatr Nephrol 32:659–667PubMed
28.
go back to reference Furth SL, Powe NR, Hwang W, Neu AM, Fivush BA (1997) Does greater pediatric experience influence treatment choices in chronic disease management? Dialysis modality choice for children with end-stage renal disease. Arch Pediatr Adolesc Med 151:545–550PubMed Furth SL, Powe NR, Hwang W, Neu AM, Fivush BA (1997) Does greater pediatric experience influence treatment choices in chronic disease management? Dialysis modality choice for children with end-stage renal disease. Arch Pediatr Adolesc Med 151:545–550PubMed
29.
go back to reference Favel K, Dionne JM (2020) Factors influencing the timing of initiation of renal replacement therapy and choice of modality in children with end-stage kidney disease. Pediatr Nephrol 35:145–151PubMed Favel K, Dionne JM (2020) Factors influencing the timing of initiation of renal replacement therapy and choice of modality in children with end-stage kidney disease. Pediatr Nephrol 35:145–151PubMed
30.
go back to reference Bekker HL WA, Gavaruzzi T, Mooney A, Wilkie M, Davies S, Crane D, Tupling K, Mathers N (2020) The dialysis decision aid booklet: making the right choices for you. Kidney Research UK, Peterborough, UK Bekker HL WA, Gavaruzzi T, Mooney A, Wilkie M, Davies S, Crane D, Tupling K, Mathers N (2020) The dialysis decision aid booklet: making the right choices for you. Kidney Research UK, Peterborough, UK
32.
go back to reference Engels N, van der Nat PB, Ankersmid JW, Prick JCM, Parent E, The R, Takahashi A, Bart HAJ, van Uden-Kraan CF, Stiggelbout AM, Bos WJW, van den Dorpel MA (2022) Development of an online patient decision aid for kidney failure treatment modality decisions. BMC Nephrol 23:236PubMedPubMedCentral Engels N, van der Nat PB, Ankersmid JW, Prick JCM, Parent E, The R, Takahashi A, Bart HAJ, van Uden-Kraan CF, Stiggelbout AM, Bos WJW, van den Dorpel MA (2022) Development of an online patient decision aid for kidney failure treatment modality decisions. BMC Nephrol 23:236PubMedPubMedCentral
33.
go back to reference Craig F, Henderson EM, Patel B, Murtagh FEM, Bluebond-Langner M (2022) Correction to: palliative care for children and young people with stage 5 chronic kidney disease. Pediatr Nephrol 37:237PubMed Craig F, Henderson EM, Patel B, Murtagh FEM, Bluebond-Langner M (2022) Correction to: palliative care for children and young people with stage 5 chronic kidney disease. Pediatr Nephrol 37:237PubMed
34.
go back to reference House TR, Wightman A (2021) Adding life to their years: the current state of pediatric palliative care in CKD. Kidney360 2:1063–1071 House TR, Wightman A (2021) Adding life to their years: the current state of pediatric palliative care in CKD. Kidney360 2:1063–1071
35.
go back to reference Preka E, Rees L (2020) Should we abandon GFR in the decision to initiate chronic dialysis? Pediatr Nephrol 35:1593–1600PubMed Preka E, Rees L (2020) Should we abandon GFR in the decision to initiate chronic dialysis? Pediatr Nephrol 35:1593–1600PubMed
36.
go back to reference Tattersall J, Dekker F, Heimburger O, Jager KJ, Lameire N, Lindley E, Van Biesen W, Vanholder R, Zoccali C; ERBP Advisory Board (2011) When to start dialysis: updated guidance following publication of the initiating dialysis early and late (IDEAL) study. Nephrol Dial Transplant 26:2082–2086 Tattersall J, Dekker F, Heimburger O, Jager KJ, Lameire N, Lindley E, Van Biesen W, Vanholder R, Zoccali C; ERBP Advisory Board (2011) When to start dialysis: updated guidance following publication of the initiating dialysis early and late (IDEAL) study. Nephrol Dial Transplant 26:2082–2086
37.
go back to reference Dart AB, Zappitelli M, Sood MM, Alexander RT, Arora S, Erickson RL, Kroeker K, Soo A, Manns BJ, Samuel SM (2017) Variation in estimated glomerular filtration rate at dialysis initiation in children. Pediatr Nephrol 32:331–340PubMed Dart AB, Zappitelli M, Sood MM, Alexander RT, Arora S, Erickson RL, Kroeker K, Soo A, Manns BJ, Samuel SM (2017) Variation in estimated glomerular filtration rate at dialysis initiation in children. Pediatr Nephrol 32:331–340PubMed
38.
go back to reference Friedewald JJ, Reese PP (2012) The kidney-first initiative: what is the current status of preemptive transplantation? Adv Chronic Kidney Dis 19:252–256PubMedPubMedCentral Friedewald JJ, Reese PP (2012) The kidney-first initiative: what is the current status of preemptive transplantation? Adv Chronic Kidney Dis 19:252–256PubMedPubMedCentral
39.
go back to reference North American Pediatric Renal Trials and Collaborative Studies (2014) NAPRTCS 2014 Annual Transplant Report. NAPRTCS, Woburn, MA North American Pediatric Renal Trials and Collaborative Studies (2014) NAPRTCS 2014 Annual Transplant Report. NAPRTCS, Woburn, MA
40.
go back to reference North American Pediatric Renal Trials and Collaborative Studies (2011) NAPRTCS 2011 Annual Dialysis Report. NAPRTCS, Woburn, MA North American Pediatric Renal Trials and Collaborative Studies (2011) NAPRTCS 2011 Annual Dialysis Report. NAPRTCS, Woburn, MA
41.
go back to reference Evans-Barns H, Mushtaq I, Michell I, Kausman J, Webb N, Taghavi K (2022) Paediatric kidney transplantation: towards a framework for pretransplant urological evaluation. Pediatr Transplant 26:e14299PubMed Evans-Barns H, Mushtaq I, Michell I, Kausman J, Webb N, Taghavi K (2022) Paediatric kidney transplantation: towards a framework for pretransplant urological evaluation. Pediatr Transplant 26:e14299PubMed
42.
go back to reference Stack AG, Martin DR (2005) Association of patient autonomy with increased transplantation and survival among new dialysis patients in the United States. Am J Kidney Dis 45:730–742PubMed Stack AG, Martin DR (2005) Association of patient autonomy with increased transplantation and survival among new dialysis patients in the United States. Am J Kidney Dis 45:730–742PubMed
43.
go back to reference Gutman T, Hanson CS, Bernays S, Craig JC, Sinha A, Dart A, Eddy AA, Gipson DS, Bockenhauer D, Yap HK, Groothoff J, Zappitelli M, Webb NJA, Alexander SI, Goldstein SL, Furth S, Samuel S, Blydt-Hansen T, Dionne J, Michael M, Wenderfer SE, Winkelmayer WC, Currier H, McTaggart S, Walker A, Ralph AF, Ju A, James LJ, Carter S, Tong A (2018) Child and parental perspectives on communication and decision making in pediatric CKD: a focus group study. Am J Kidney Dis 72:547–559PubMed Gutman T, Hanson CS, Bernays S, Craig JC, Sinha A, Dart A, Eddy AA, Gipson DS, Bockenhauer D, Yap HK, Groothoff J, Zappitelli M, Webb NJA, Alexander SI, Goldstein SL, Furth S, Samuel S, Blydt-Hansen T, Dionne J, Michael M, Wenderfer SE, Winkelmayer WC, Currier H, McTaggart S, Walker A, Ralph AF, Ju A, James LJ, Carter S, Tong A (2018) Child and parental perspectives on communication and decision making in pediatric CKD: a focus group study. Am J Kidney Dis 72:547–559PubMed
44.
go back to reference Barrett TM, Davenport CA, Ephraim PL, Peskoe S, Mohottige D, DePasquale N, McElroy L, Boulware LE (2022) Disparities in discussions about kidney replacement therapy in CKD care. Kidney360 3:158–163 Barrett TM, Davenport CA, Ephraim PL, Peskoe S, Mohottige D, DePasquale N, McElroy L, Boulware LE (2022) Disparities in discussions about kidney replacement therapy in CKD care. Kidney360 3:158–163
45.
go back to reference Wang KM, Mendu ML (2022) Unmasking disparities in kidney replacement therapy among young patients-a call to action. Am J Kidney Dis 80:1–3PubMed Wang KM, Mendu ML (2022) Unmasking disparities in kidney replacement therapy among young patients-a call to action. Am J Kidney Dis 80:1–3PubMed
46.
go back to reference Ku E, McCulloch CE, Grimes BA, Johansen KL (2017) Racial and ethnic disparities in survival of children with ESRD. J Am Soc Nephrol 28:1584–1591PubMed Ku E, McCulloch CE, Grimes BA, Johansen KL (2017) Racial and ethnic disparities in survival of children with ESRD. J Am Soc Nephrol 28:1584–1591PubMed
47.
go back to reference Minnick ML, Boynton S, Ndirangu J, Furth S (2010) Sex, race, and socioeconomic disparities in kidney disease in children. Semin Nephrol 30:26–32PubMed Minnick ML, Boynton S, Ndirangu J, Furth S (2010) Sex, race, and socioeconomic disparities in kidney disease in children. Semin Nephrol 30:26–32PubMed
48.
go back to reference 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 3:28–34PubMed 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 3:28–34PubMed
49.
go back to reference Seikaly MG, Salhab N, Browne R (2005) Patterns and time of initiation of dialysis in US children. Pediatr Nephrol 20:982–988PubMed Seikaly MG, Salhab N, Browne R (2005) Patterns and time of initiation of dialysis in US children. Pediatr Nephrol 20:982–988PubMed
50.
go back to reference Ferris ME, Gipson DS, Kimmel PL, Eggers PW (2006) Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America. Pediatr Nephrol 21:1020–1026PubMed Ferris ME, Gipson DS, Kimmel PL, Eggers PW (2006) Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America. Pediatr Nephrol 21:1020–1026PubMed
51.
go back to reference Ajarmeh S, Er L, Brin G, Djurdjev O, Dionne JM (2012) The effect of a multidisciplinary care clinic on the outcomes in pediatric chronic kidney disease. Pediatr Nephrol 27:1921–1927PubMed Ajarmeh S, Er L, Brin G, Djurdjev O, Dionne JM (2012) The effect of a multidisciplinary care clinic on the outcomes in pediatric chronic kidney disease. Pediatr Nephrol 27:1921–1927PubMed
Metadata
Title
Preparing for kidney replacement therapy in pediatric advanced CKD: a review of literature and defining a multi-disciplinary clinical approach to patient-caregiver education
Authors
Rachel Millner
Brendan Crawford
Saritha Ranabothu
Richard Blaszak
Publication date
10-04-2023
Publisher
Springer Berlin Heidelberg
Published in
Pediatric Nephrology / Issue 12/2023
Print ISSN: 0931-041X
Electronic ISSN: 1432-198X
DOI
https://doi.org/10.1007/s00467-023-05953-7

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