The Start of the Transplant Journey: Referral for Pediatric Solid Organ Transplantation

Overview

Journal Pediatr Transplant

Specialty Pediatrics

Date 2014 Jan 21

PMID 24438194

Citations 6

Authors

Diana Shellmer

Cheryl Brosig

Jo Wray

Affiliations

Soon will be listed here.

Abstract

The focus of the majority of the psychosocial transplant literature is on post-transplant outcomes, but the transplant journey starts much earlier than this, at the point when transplantation is first considered and a referral for transplant evaluation is made. In this review, we cover information regarding the meaning of the referral process for solid organ transplantation. We discuss various factors of the referral for transplantation including the impact of referral on the pediatric patient and the family, potential expectations and misconceptions held by pediatric patients and parents, the role of health literacy, decision-making factors, and the informational needs of pediatric patients and parents. We elucidate steps that providers can take to enhance transplant referral and provide suggestions for much needed research within this area.

Citing Articles

Access to and Health Outcomes of Pediatric Solid Organ Transplantation for Indigenous Children in 4 Settler-colonial Countries: A Scoping Review.

Lin J, Selkirk E, Siqueira I, Beaucage M, Carriere C, Dart A Transplantation. 2025; 108(12):2324-2335.

PMID: 40020657 PMC: 11581436. DOI: 10.1097/TP.0000000000005071.

A pediatric case series of catastrophic gastrointestinal complications of posttransplant lymphoproliferative disease with increasing incidence, high association with coronavirus disease 2019, higher mortality, and a plea for early endoscopy to....

Keshtkar A, Karbasian F, Reihani H, Atighi F, Hedayati S, Ataollahi M J Med Case Rep. 2023; 17(1):396.

PMID: 37723518 PMC: 10507962. DOI: 10.1186/s13256-023-04123-5.

Determinants of length of stay after pediatric liver transplantation.

Covarrubias K, Luo X, Massie A, Schwarz K, Garonzik-Wang J, Segev D Pediatr Transplant. 2020; 24(4):e13702.

PMID: 32212292 PMC: 7260078. DOI: 10.1111/petr.13702.

How patients choose kidney transplant centers: A qualitative study of patient experiences.

Schaffhausen C, Bruin M, McKinney W, Snyder J, Matas A, Kasiske B Clin Transplant. 2019; 33(5):e13523.

PMID: 30861199 PMC: 6943941. DOI: 10.1111/ctr.13523.

What patients and members of their support networks ask about transplant program data.

Schaffhausen C, Bruin M, Chesley D, McBride M, Snyder J, Kasiske B Clin Transplant. 2017; 31(12).

PMID: 28944568 PMC: 5720923. DOI: 10.1111/ctr.13125.

References

Canter C, Shaddy R, Bernstein D, Hsu D, Chrisant M, Kirklin J . Indications for heart transplantation in pediatric heart disease: a scientific statement from the American Heart Association Council on Cardiovascular Disease in the Young; the Councils on Clinical Cardiology, Cardiovascular Nursing, and.... Circulation. 2007; 115(5):658-76. DOI: 10.1161/CIRCULATIONAHA.106.180449. View

McDiarmid S, Anand R, Lindblad A . Studies of Pediatric Liver Transplantation: 2002 update. An overview of demographics, indications, timing, and immunosuppressive practices in pediatric liver transplantation in the United States and Canada. Pediatr Transplant. 2004; 8(3):284-94. DOI: 10.1111/j.1399-3046.2004.00153.x. View

Sterner K, Zelikovsky N, Green C, Kaplan B . Psychosocial evaluation of candidates for living related kidney donation. Pediatr Nephrol. 2006; 21(10):1357-63. DOI: 10.1007/s00467-006-0177-4. View

Mahle W, Wernovsky G . Neurodevelopmental outcomes in hypoplastic left heart syndrome. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2004; 7:39-47. DOI: 10.1053/j.pcsu.2004.02.019. View

Gotz I, Labenbacher I, Eichler I, Wojnarowski C, Gotz M . Health-independent lung transplantation information of parents of children with cystic fibrosis. Transplantation. 1997; 64(5):742-7. DOI: 10.1097/00007890-199709150-00014. View

Lang L, Duff A, Brownlee K . Introducing the need for lung transplantation in children with cystic fibrosis: parental experiences. J Cyst Fibros. 2005; 4(4):259-62. DOI: 10.1016/j.jcf.2005.07.002. View

Ingerski L, Shaw K, Gray W, Janicke D . A pilot study comparing traumatic stress symptoms by child and parent report across pediatric chronic illness groups. J Dev Behav Pediatr. 2010; 31(9):713-9. PMC: 2975762. DOI: 10.1097/DBP.0b013e3181f17c52. View

Gordon E, Wolf M . Health literacy skills of kidney transplant recipients. Prog Transplant. 2009; 19(1):25-34. DOI: 10.1177/152692480901900104. View

Vandemheen K, Aaron S, Poirier C, Tullis E, OConnor A . Development of a decision aid for adult cystic fibrosis patients considering referral for lung transplantation. Prog Transplant. 2010; 20(1):81-7. DOI: 10.1177/152692481002000113. View

10.

Bakr A, Amr M, Sarhan A, Hammad A, Ragab M, El-Refaey A . Psychiatric disorders in children with chronic renal failure. Pediatr Nephrol. 2006; 22(1):128-31. DOI: 10.1007/s00467-006-0298-9. View

11.

Nicholas D, Picone G, Selkirk E . The lived experiences of children and adolescents with end-stage renal disease. Qual Health Res. 2010; 21(2):162-73. DOI: 10.1177/1049732310382789. View

12.

Campbell M, Wright L, Greenberg R, Grant D . How young is too young to be a living donor?. Am J Transplant. 2013; 13(7):1643-9. DOI: 10.1111/ajt.12307. View

13.

Dharnidharka V, Tejani A, Ho P, Harmon W . Post-transplant lymphoproliferative disorder in the United States: young Caucasian males are at highest risk. Am J Transplant. 2002; 2(10):993-8. DOI: 10.1034/j.1600-6143.2002.21019.x. View

14.

Kuhl U, Schultheiss H . Myocarditis in children. Heart Fail Clin. 2010; 6(4):483-96, viii-ix. DOI: 10.1016/j.hfc.2010.05.009. View

15.

Fine R, Alonso E, Fischel J, Bucuvalas J, Enos R, Gore-Langton R . Pediatric transplantation of the kidney, liver and heart: summary report. Pediatr Transplant. 2004; 8(1):75-86. DOI: 10.1111/j.1399-3046.2004.2s050.x. View

16.

Hummelinck A, Pollock K . Parents' information needs about the treatment of their chronically ill child: a qualitative study. Patient Educ Couns. 2005; 62(2):228-34. DOI: 10.1016/j.pec.2005.07.006. View

17.

Steinman T, Becker B, Frost A, Olthoff K, Smart F, Suki W . Guidelines for the referral and management of patients eligible for solid organ transplantation. Transplantation. 2001; 71(9):1189-204. DOI: 10.1097/00007890-200105150-00001. View

18.

de Geest S, Dobbels F, Fluri C, Paris W, Troosters T . Adherence to the therapeutic regimen in heart, lung, and heart-lung transplant recipients. J Cardiovasc Nurs. 2005; 20(5 Suppl):S88-98. DOI: 10.1097/00005082-200509001-00010. View

19.

Parker R, Ratzan S . Health literacy: a second decade of distinction for Americans. J Health Commun. 2010; 15 Suppl 2:20-33. DOI: 10.1080/10810730.2010.501094. View

20.

Goodwin Anne Maree Bickerton Ross Parsons Bryan Lask M . Paediatric heart/heart-lung transplantation: A systemic perspective on assessment and preparation. Int J Psychiatry Clin Pract. 2014; 4(2):93-9. DOI: 10.1080/13651500050518235. View