Top

Published in:

12-12-2023 | Original Article

Transition of care: lessons from the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) dialysis collaborative

Authors: Raj Munshi, Alison Hewitt Torres, Bertha Ramirez-Preciado, Laura J. Castellanos Reyes, Troy Richardson, Cozumel S. Pruette

Published in: Pediatric Nephrology | Issue 5/2024

Abstract

Background

Acknowledging the importance of preparing the pediatric dialysis patient for successful transfer to adult providers, centers from the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) Dialysis Collaborative developed transition tools and performed iterative implementation of a transition of care (TOC) program to gain real-life insight into drivers and barriers towards implementation of a transition program for patients receiving dialysis.

Methods

A TOC innovation workgroup was developed in 2019 from within SCOPE Collaborative that developed nine educational modules, along with introductory letter and assessment tool to be utilized by SCOPE centers. A 4-month pilot implementation study among six centers of varying patient population (age ≥ 11 years) was performed. TOC tools were further refined, and broader implementation within the collaborative was performed. Interim assessment of TOC tool utilization and implementation success was performed among 11 centers, as a foundation towards broader discussion regarding process, barriers, and success towards TOC implementation among 26 centers.

Results

Transition champion was a key driver of successful implementation, and lack of institutional support and collaboration with adult dialysis centers were important barriers towards sustainability. COVID pandemic and increased staff turnover affected longer term implementation of TOC program.

Conclusions

Successful transition and transfer of adolescents/young adults with kidney failure on dialysis remains a challenge. This study represents the experience of the largest cohort of pediatric dialysis centers, with diversity in population size and geography, towards development and implementation of a TOC program. This adds to the resources available to assist centers towards transition and transfer, with particular focus on transitioning patients on dialysis.

Graphical abstract

A higher resolution version of the Graphical abstract is available as Supplementary information.

Available only for authorised users

Watson AR, Harden PN, Ferris ME, Kerr PG, Mahan JD, Ramzy MF, International Society of Nephrology; International Pediatric Nephrology Association (2011) Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Kidney Int 80:704–707. https://doi.org/10.1038/ki.2011.209CrossRefPubMed

White PH, Cooley WC, Transitions Clinical Report Authoring Group; American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians (2018) Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 142:e20182587. https://doi.org/10.1542/peds.2018-2587CrossRefPubMed

United States Renal Data System (2022) USRDS Annual Data Report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2022

Lenroot RK, Giedd JN (2006) Brain development in children and adolescents: insights from anatomical magnetic resonance imaging. Neurosci Biobehav Rev 30:718–729. https://doi.org/10.1016/j.neubiorev.2006.06.001CrossRefPubMed

Gipson DS, Hooper SR, Duquette PJ, Wetherington CE, Stellwagen KK, Jenkins TL, Ferris ME (2006) Memory and executive functions in pediatric chronic kidney disease. Child Neuropsychol 12:391–405. https://doi.org/10.1080/09297040600876311CrossRefPubMed

Hooper SR, Gerson AC, Butler RW, Gipson DS, Mendley SR, Lande MB, Shinnar S, Wentz A, Matheson M, Cox C et al (2011) Neurocognitive functioning of children and adolescents with mild-to-moderate chronic kidney disease. Clin J Am Soc Nephrol 6:1824–1830. https://doi.org/10.2215/CJN.09751110CrossRefPubMedPubMedCentral

Duquette PJ, Hooper SR, Wetherington CE, Icard PF, Gipson DS (2007) Brief report: intellectual and academic functioning in pediatric chronic kidney disease. J Pediatr Psychol 32:1011–1017. https://doi.org/10.1093/jpepsy/jsm036CrossRefPubMed

Harshman LA, Johnson RJ, Matheson MB, Kogon AJ, Shinnar S, Gerson AC, Warady BA, Furth SL, Hooper SR (2019) Academic achievement in children with chronic kidney disease: a report from the CKiD cohort. Pediatr Nephrol 34:689–696. https://doi.org/10.1007/s00467-018-4144-7CrossRefPubMed

Chen K, Didsbury M, van Zwieten A, Howell M, Kim S, Tong A, Howard K, Nassar N, Barton B, Lah S 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.09650917CrossRefPubMedPubMedCentral

10.

Ruebner RL, Laney N, Kim JY, Hartung EA, Hooper SR, Radcliffe J, Furth SL (2016) Neurocognitive dysfunction in children, adolescents, and young adults with CKD. Am J Kidney Dis 67:567–575. https://doi.org/10.1053/j.ajkd.2015.08.025CrossRefPubMed

11.

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

12.

Johnson RJ, Gerson AC, Harshman LA, Matheson MB, Shinnar S, Lande MB, Kogon A, Gipson DS, Warady BA, Furth SL et al (2020) A longitudinal examination of parent-reported emotional-behavioral functioning of children with mild to moderate chronic kidney disease. Pediatr Nephrol 35:1287–1295. https://doi.org/10.1007/s00467-020-04511-9CrossRefPubMedPubMedCentral

13.

McDonald SP, Craig JC, Australian and New Zealand Paediatric Nephrology Association (2004) Long-term survival of children with end-stage renal disease. N Engl J Med 350:2654–2662. https://doi.org/10.1056/NEJMoa031643CrossRefPubMed

14.

Groothoff JW, Gruppen MP, Offringa M, Hutten J, Lilien MR, Van De Kar NJ, Wolff ED, Davin JC, Heymans HS (2002) Mortality and causes of death of end-stage renal disease in children: a Dutch cohort study. Kidney Int 61:621–629. https://doi.org/10.1046/j.1523-1755.2002.00156.xCrossRefPubMed

15.

Parekh RS, Carroll CE, Wolfe RA, Port FK (2002) Cardiovascular mortality in children and young adults with end-stage kidney disease. J Pediatr 141:191–197. https://doi.org/10.1067/mpd.2002.125910CrossRefPubMed

16.

Ferris ME, Harward DH, Bickford K, Layton JB, Ferris MT, Hogan SL, Gipson DS, McCoy LP, Hooper SR (2012) A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TR(x)ANSITION scale. Ren Fail 34:744–753. https://doi.org/10.3109/0886022X.2012.678171CrossRefPubMed

17.

Cohen SE, Hooper SR, Javalkar K, Haberman C, Fenton N, Lai H, Mahan JD, Massengill S, Kelly M, Cantú G et al (2015) Self-management and transition readiness assessment: concurrent, predictive and discriminant validation of the STARx Questionnaire. J Pediatr Nurs 30:668–676. https://doi.org/10.1016/j.pedn.2015.05.006CrossRefPubMed

18.

Ferris M, Cohen S, Haberman C, Javalkar K, Massengill S, Mahan JD, Kim S, Bickford K, Cantu G, Medeiros M et al (2015) Self-management and transition readiness assessment: development, reliability, and factor structure of the STARx Questionnaire. J Pediatr Nurs 30:691–699. https://doi.org/10.1016/j.pedn.2015.05.009CrossRefPubMed

19.

Neu AM, Miller MR, Stuart J, Lawlor J, Richardson T, Martz K, Rosenberg C, Newland J, McAfee N, Begin B et al (2014) Design of the standardizing care to improve outcomes in pediatric end stage renal disease collaborative. Pediatr Nephrol 29:1477–1484. https://doi.org/10.1007/s00467-014-2891-7CrossRefPubMed

20.

Pruette CS, Ranch D, Shih WV, Ferris MD (2022) Health care transition in adolescents and young adults with chronic kidney disease: focus on the individual and family support systems. Adv Chronic Kidney Dis 29:318–326. https://doi.org/10.1053/j.ackd.2022.02.004CrossRefPubMed

21.

Pape L, Lämmermühle J, Oldhafer M, Blume C, Weiss R, Ahlenstiel T (2013) Different models of transition to adult care after pediatric kidney transplantation: a comparative study. Pediatr Transplant 17:518–524. https://doi.org/10.1111/petr.12102CrossRefPubMed

22.

Harden PN, Walsh G, Bandler N, Bradley S, Lonsdale D, Taylor J, Marks SD (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.e3718CrossRefPubMed

23.

Samuel SM, Nettel-Aguirre A, Hemmelgarn BR, Tonelli MA, Soo A, Clark C, Alexander RT, Foster BJ, Pediatric Renal Outcomes Canada Group (2011) Graft failure and adaptation period to adult healthcare centers in pediatric renal transplant patients. Transplantation 91:1380–1385. https://doi.org/10.1097/TP.0b013e31821b2f4bCrossRefPubMed

24.

Foster BJ, Platt RW, Dahhou M, Zhang X, Bell LE, Hanley JA (2011) The impact of age at transfer from pediatric to adult-oriented care on renal allograft survival. Pediatr Transplant 15:750–759. https://doi.org/10.1111/j.1399-3046.2011.01567.xCrossRefPubMed

25.

Choukair D, Rieger S, Bethe D, Treiber D, Hoffmann GF, Grasemann C, Burgard P, Beimler J, Mittnacht J, Tönshoff B (2024) Resource use and costs of transitioning from pediatric to adult care for patients with chronic kidney disease. Pediatr Nephrol 39:251–260. https://doi.org/10.1007/s00467-023-06075-wCrossRefPubMed

Title: Transition of care: lessons from the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) dialysis collaborative
Authors: Raj Munshi
Alison Hewitt Torres
Bertha Ramirez-Preciado
Laura J. Castellanos Reyes
Troy Richardson
Cozumel S. Pruette
Publication date: 12-12-2023
Publisher: Springer Berlin Heidelberg
Published in: Pediatric Nephrology / Issue 5/2024
Print ISSN: 0931-041X
Electronic ISSN: 1432-198X
DOI: https://doi.org/10.1007/s00467-023-06244-x

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Transition of care: lessons from the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) dialysis collaborative

Abstract

Background

Methods

Results

Conclusions

Graphical abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Graphical abstract

Please log in to get access to this content

Other articles of this Issue 5/2024

Remembering Patrick “Pat” Brophy, a transformational leader, whose focus was always on the children

Evidence-based clinical practice guideline for management of urinary tract infection and primary vesicoureteric reflux

Low C3 in a 4-month-old baby: is it a problem?

Effect of peritoneal dialysate on bioelectrical impedance analysis variability in pediatric patients receiving peritoneal dialysis

Beyond the kidney: extra-renal manifestations of monogenic nephrolithiasis and their significance

Non-contrast-enhanced magnetic resonance urography for measuring split kidney function in pediatric patients with hydronephrosis: comparison with renal scintigraphy