The multifaceted role of neuropsychology in pediatric solid organ transplant: preliminary guidelines and strategies for clinical practice

References

• Afshar, S., Porter, M., Barton, B., & Stormon, M. (2018). Intellectual and academic outcomes after pediatric liver transplantation: Relationship with transplant-related factors. American Journal of Transplantation, 18(9), 2229–2237. https://doi.org/10.1111/ajt.14924
   PubMed Web of Science ®Google Scholar
• Alonso, E. M., & Sorensen, L. G. (2009). Cognitive development following pediatric solid organ transplantation. Current Opinion in Organ Transplantation, 14(5), 522–525. https://doi.org/10.1097/MOT.0b013e3283307a62
   PubMed Web of Science ®Google Scholar
• Amatya, K., Monnin, K., & Steinberg Christofferson, E. (2021). Psychological functioning and psychosocial issues in pediatric kidney transplant recipients. Pediatric Transplantation, 25(1), 1–13. https://doi.org/10.1111/petr.13842
   Web of Science ®Google Scholar
• Anghel, D., Tanasescu, R., Campeanu, A., Lupescu, I., Podda, G., & Bajenaru, O. (2013). Neurotoxicity of immunosuppressive therapies in organ transplantation. Maedica, 8(2), 170–175.
   PubMedGoogle Scholar
• Annunziato, R. A., Arrato, N., Rubes, M., & Arnon, R. (2015). The importance of mental health monitoring during transfer to adult care settings as examined among paediatric transplant recipients. Journal of Paediatrics and Child Health, 51(2), 220–222. https://doi.org/10.1111/jpc.12765
   PubMed Web of Science ®Google Scholar
• Antonini, T. N., Beer, S. S., Miloh, T., Dreyer, W. J., & Caudle, S. E. (2017). Neuropsychological functioning in preschool-aged children undergoing evaluation for organ transplant. The Clinical Neuropsychologist, 31(2), 352–370. https://doi.org/10.1080/13854046.2016.1211245
   PubMed Web of Science ®Google Scholar
• Antonini, T. N., Dreyer, W. J., & Caudle, S. E. (2018). Neurodevelopmental functioning in children being evaluated for heart transplant prior to 2 years of age. Child Neuropsychology, 24(1), 46–60. https://doi.org/10.1080/09297049.2016.1223283
   PubMed Web of Science ®Google Scholar
• Arnold, R., Issar, T., Krishnan, A. V., & Pussell, B. A. (2016). Neurological complications in chronic kidney disease. JRSM Cardiovascular Disease, 5, 204800401667768. https://doi.org/10.1177/2048004016677687
   Web of Science ®Google Scholar
• Balsamo, L. M., Mitchell, H., Ross, W., Metayer, C., Hardy, K. K., & Kaden Lottick, N. S. (2019). Monitoring neurocognitive functioning in childhood cancer survivors: Evaluation of CogState computerized assessment and the Brief Rating Inventory of Executive Function (BRIEF). BMC Psychology, 7(26), 1–8. https://doi.org/10.1186/s40359-019-0302-3
   PubMedGoogle Scholar
• Barnes, A., & Gibson, W. (2021). Pediatric heart transplant. Seminars in Pediatric Surgery, 30(2), 151039. https://doi.org/10.1016/j.sempedsurg.2021.151039
   PubMed Web of Science ®Google Scholar
• Baum, M., Freier, M. C., Freeman, K., Babikian, T., Ashwal, S., Chinnock, R., & Bailey, L. (2004). Neuropsychological outcome of infant heart transplant recipients. The Journal of Pediatrics, 145(3), 365–372. https://doi.org/10.1016/j.jpeds.2004.05.047
   PubMed Web of Science ®Google Scholar
• Baum, K. T., Powell, S. K., Jacobson, L. A., Gragert, M. N., Janzen, L. A., Paltin, I., Rey-Casserly, C. M., & Wilkening, G. N. (2016). Implementing guidelines: Proposed definitions of neuropsychology services in pediatric oncology. Pediatric Blood and Cancer, 64(8), 1–7. https://doi.org/10.1002/pbc.26446
   Web of Science ®Google Scholar
• Beca, J., Gunn, J. K., Coleman, L., Hope, A., Reed, P. W., Hunt, R. W., Finucane, K., Brizard, C., Dance, B., & Shekerdemian, L. S. (2013). New white matter brain injury after infant heart surgery is associated with diagnostic group and the use of circulatory arrest. Circulation, 127(9), 971–979. https://doi.org/10.1161/CIRCULATIONAHA.112.001089
   PubMed Web of Science ®Google Scholar
• Becherucci, F., Roperto, R. M., Materassi, M., & Romagnani, P. (2016). Chronic kidney disease in children. Clinical Kidney Journal, 9(4), 583–591. https://doi.org/10.1093/ckj/sfw047
   PubMed Web of Science ®Google Scholar
• Bell, L. E., Bartosh, S. M., Davis, C. L., Dobbels, F., Al-Uzri, A., Lotstein, D., Reiss, J., & Dharnidharka, V. R. (2008). Adolescent transition to adult care in solid organ transplantation: A consensus conference report. American Journal of Transplantation, 8(11), 2230–2242. https://doi.org/10.1111/j.1600-6143.2008.02415.x
   PubMed Web of Science ®Google Scholar
• Bellinger, D. C., Wypij, D., Kuban, K. C. K., Rappaport, L. A., Hickey, P. R., Wernovsky, G., Jones, R. A., & Newburger, J. W. (1999). Developmental and neurological status of children at 4 years of age after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypass. Circulation, 100(5), 526–532. https://doi.org/10.1161/01.CIR.100.5.526
   PubMed Web of Science ®Google Scholar
• Blum, R. W., Garell, D., Hodgman, C. H., Jorissen, T. W., Okinow, N. A., Orr, D. P., & Slap, G. B. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions. Journal of Adolescent Health, 14(7), 570–576. https://doi.org/10.1016/1054-139x(93)90143-d
   PubMed Web of Science ®Google Scholar
• Brosig, C. L., Mussatto, K. A., Kuhn, E. M., & Tweddell, J. S. (2007). Neurodevelopmental outcome in preschool survivors of complex congenital heart disease: Implications for clinical practice. Journal of Pediatric Health Care: Official Publication of National Association of Pediatric Nurse Associates & Practitioners, 21(1), 3–12. https://doi.org/10.1016/j.pedhc.2006.03.008
   PubMedGoogle Scholar
• Brouhard, B. H., Donaldson, L. A., Lawry, K. W., McGowan, K. R. B., Drotar, D., Davis, I., Rose, S., Cohn, R. A., & Tejani, A. (2000). Cognitive functioning in children on dialysis and post-transplantation. Pediatric Transplantation, 4(4), 261–267. https://doi.org/10.1034/j.1399-3046.2000.00121.x
   PubMedGoogle Scholar
• Bürker, B. S., Gullestad, L., Gude, E., Relbo Authen, A., Grov, I., Hol, P. K., Andreassen, A. K., Arora, S., Dew, M. A., Fiane, A. E., Haraldsen, I. R., Malt, U. F., & Andersson, S. (2017). Cognitive function after heart transplantation: Comparing everolimus-based and calcineurin inhibitor-based regimens. Clinical Transplantation, 31(4), e12927. https://doi.org/10.1111/ctr.12927
   Web of Science ®Google Scholar
• Cassidy, A. R. (2022). Congenital heart disease. In M. H. Beauchamp, R. Peterson, M. D. Ris, H. G. Taylor, & K. O. Yeates (Eds.), Pediatric neuropsychology: Research, theory, & practice (3rd ed., pp. 150–170). Guilford Press.
   Google Scholar
• Cassidy, A. R., Ilardi, D., Bowen, S. R., Hampton, L. E., Heinrich, K. P., Loman, M. M., Sanz, J. H., & Wolfe, K. R. (2018). Congenital heart disease: A primer for the pediatric neuropsychologist. Child Neuropsychology, 24(7), 859–902. https://doi.org/10.1080/09297049.2017.1373758
   PubMed Web of Science ®Google Scholar
• Chadban, S. J., Ahn, C., Axelrod, D. A., Foster, B. J., Kasiske, B. L., Kher, V., Kumar, D., Oberbauer, R., Pascual, J., Pilmore, H. L., Rodrigue, J. R., Segev, D. L., Sheerin, N., Tinckam, K. J., Wong, G., Knoll, G. A., Gordon, C. E., Earley, A., Rofeberg, V., & Knoll, G. A. (2020). KDIGO clinical practice guideline on the evaluation and management of candidates for kidney transplantation. Transplantation, 104(4), S111–S103. https://doi.org/10.1097/TP.0000000000003136
   Web of Science ®Google Scholar
• Chen, K., Didsbury, M., van Zwieten, A., Howell, M., Kim, S., Tong, A., Howard, K., Nassar, N., Barton, B., Lah, S., Lorenzo, J., Strippoli, G., Palmer, S., Teixeira-Pinto, F. M., Taggart, S., Walker, A., Kara, T., Craig, J. C., & Wong, G. (2018). Neurocognitive and educational outcomes in children and adolescents with CKD: A systematic review and meta-analysis. Clinical Journal of the American Society of Nephrology, 13(3), 387–397. https://doi.org/10.2215/CJN.09650917
   PubMed Web of Science ®Google Scholar
• Chen, Y., Wang, A., Tang, J., Wei, D., Li, P., Chen, K., Wang, Y., & Zhang, Z. (2015). Association of white matter integrity and cognitive functions in patients with subcortical silent lacunar infarcts. Stroke, 46(4), 1123–1126. https://doi.org/10.1161/STROKEAHA.115.008998
   PubMed Web of Science ®Google Scholar
• Chinnock, R. E., Freier, M. C., Ashwal, S., Pivonka-Jones, J., Shankel, T., Cutler, D., & Bailey, L. (2008). Developmental outcomes after pediatric heart transplantation. The Journal of Heart and Lung Transplantation, 27(10), 1079–1084. https://doi.org/10.1016/j.healun.2008.07.012
   PubMed Web of Science ®Google Scholar
• Clouchoux, C., du Plessis, A. J., Bouyssi-Kobar, M., Tworetzky, W., McElhinney, D. B., Brown, D. W., Gholipour, A., Kudelski, D., Warfield, S. K., McCarter, R. J., Robertson, R. L., Evans, A. C., Newburger, J. W., & Limperopoulos, C. (2013). Delayed cortical development in fetuses with complex congenital heart disease. Cerebral Cortex, 23(12), 2932–2943. https://doi.org/10.1093/cercor/bhs281
   PubMed Web of Science ®Google Scholar
• Cole, P. D., Kim, S. Y., Schembri, A., Kelly, K. M., Sulis, M., Vrooman, L., Welch, J. J. G., Ramjan, S., Silverman, L. B., & Sands, S. A. (2023). Feasibility of serial neurocognitive assessment using CogState during and after therapy for childhood leukemia. Supportive Care in Cancer, 31(109), 1–12. https://doi.org/10.1007/s00520-022-07566-6
   Google Scholar
• Cousino, M. K., Miller, V. A., Smith, C., Uzark, K., Lowery, R., Rottach, N., Blume, E. D., & Schumacher, K. R. (2020). Medical and end-of-life decision making in adolescents’ pre-heart transplant: A descriptive pilot study. Palliative Medicine, 34(3), 272–280. https://doi.org/10.1177/0269216319874689
   PubMed Web of Science ®Google Scholar
• Cousino, M. K., Rea, K. E., & Mednick, L. M. (2017). Understanding the healthcare communication needs of pediatric patients through the my CHATT tool: A pilot study. Journal of Communication in Healthcare, 10(1), 16–21. https://doi.org/10.1080/17538068.2017.1278637
   Google Scholar
• Cousino, M. K., Schumacher, K. R., Magee, J. C., Wolfe, J., Yu, S., Eder, S. J., & Fredericks, E. M. (2019). Communication about prognosis and end‐of‐life in pediatric organ failure and transplantation. Pediatric Transplantation, 23(3), e13373. https://doi.org/10.1111/petr.13373
   PubMed Web of Science ®Google Scholar
• Crowe, L., Anderson, V., Hardikar, W., & Boneh, A. (2018). Cognitive and behavioral outcomes of paediatric liver transplantation for ornithine transcarbamylase deficiency. JIMD Reports, 43, 19–25.
   PubMedGoogle Scholar
• Cuenca, A. G., Kim, H. B., & Vakili, K. (2017). Pediatric liver transplantation. Seminars in Pediatric Surgery, 26(4), 217–223. https://doi.org/10.1053/j.sempedsurg.2017.07.014
   PubMed Web of Science ®Google Scholar
• Cushman, G. K., Stolz, M. G., Blount, R. L., & Reed, B. (2020). Executive functioning in pediatric solid organ transplant recipients: A meta-analytic review. Transplantation, 104(2), 357–366. https://doi.org/10.1097/TP.0000000000002954
   PubMed Web of Science ®Google Scholar
• Daly, B., Kral, M. C., & Tarazi, R. A. (2011). The role of neuropsychological evaluation in pediatric sickle cell disease. The Clinical Neuropsychologist, 25(6), 903–925. https://doi.org/10.1080/13854046.2011.560190
   PubMed Web of Science ®Google Scholar
• Dara, N., Sayyari, A., & Imanzadeh, F. (2014). Hepatic encephalopathy: Early diagnosis in pediatric patients with cirrhosis. Iran Journal Child Neurology, 8(1), 1–11.
   PubMedGoogle Scholar
• Das, B. B. (2018). Current state of pediatric heart failure. Children, 5(7), 88. https://doi.org/10.3390/children5070088
   PubMedGoogle Scholar
• Davis, I. D., Chang, P. H., & Nevis, T. E. (1990). Successful renal transplantation accelerates development in young uremic children. Pediatrics, 86(4), 594–600. https://doi.org/10.1542/peds.86.4.594
   PubMed Web of Science ®Google Scholar
• DeMaso, D. R., Calderon, J., Taylor, G. A., Holland, J. E., Stopp, C., White, M. T., Bellinger, D. C., Rivkin, M. J., Wypij, D., & Newburger, J. W. (2017). Psychiatric disorders in adolescents with single ventricle congenital heart disease. Pediatrics, 139(3), e20162241. https://doi.org/10.1542/peds.2016-2241
   PubMed Web of Science ®Google Scholar
• DeMaso, D. R., Labella, M., Taylor, G. A., Forbes, P. W., Stopp, C., Bellinger, D. C., Rivkin, M. J., Wypij, D., & Newburger, J. W. (2014). Psychiatric disorders and function in adolescents with d-TGA. Journal of Pediatrics, 165(4), 760–766. https://doi.org/10.1016/j.jpeds.2014.06.029
   PubMed Web of Science ®Google Scholar
• Deshpande, R. R., Bowles, M. J., Vilca-Melendez, H., Srinivasan, P., Girlanda, R., Dhawan, A., Mieli-Vergani, G., Muiesan, P., Heaton, N. D., & Rela, M. (2002). Results of split liver transplantation in children. Annals of Surgery, 236(2), 248–253. https://doi.org/10.1097/00000658-200208000-00014
   PubMed Web of Science ®Google Scholar
• Diaz, L. K., Gaynor, J. W., Koh, S. J., Ittenbach, R. F., Gerdes, M., Bernbaum, J. C., Zackai, E. H., Clancy, R. R., Rehman, M. A., Pennington, J. W., Burnham, N., Spray, T. L., & Nicolson, S. C. (2016). Increasing cumulative exposure to volatile anesthetic agents is associated with poorer neurodevelopmental outcomes in children with hypoplastic left heart syndrome. The Journal of Thoracic and Cardiovascular Surgery, 152(2), 482–489. https://doi.org/10.1016/j.jtcvs.2016.03.095
   PubMed Web of Science ®Google Scholar
• Dobbels, F., Damme‐Lombaert, R., Vanhaecke, J., & Geest, S. D. (2005). Growing pains: Non‐adherence with the immunosuppressive regimen in adolescent transplant recipients. Pediatric Transplantation, 9(3), 381–390. https://doi.org/10.1111/j.1399-3046.2005.00356.x
   PubMed Web of Science ®Google Scholar
• Downes, K. J., Danziger-Isakov, L. A., Cousino, M. K., Green, M., Michaels, M. G., Muller, W. J., Orscheln, R. C., Sharma, T. S., Statler, V. A., Wattier, R. L., & Ardura, M. I. (2020). Return to school for pediatric solid organ transplant recipients in the United States during the coronavirus disease 2019 pandemic: Expert opinion on key considerations and best practices. Journal of the Pediatric Infectious Diseases Society, 9(5), 551–563. https://doi.org/10.1093/JPIDS/PIAA095
   PubMed Web of Science ®Google Scholar
• Downes, M., Keenan, L., Duane, Y., Duffy, K., Fortune, G., Geoghegan, R., Conroy, H., & McMahon, C. (2022). Executive function in children with sickle cell anemia on transfusion: NIH toolbox utility in the clinical context. The Clinical Neuropsychologist, 36(6), 1573–1588. https://doi.org/10.1080/13854046.2020.1847325
   PubMed Web of Science ®Google Scholar
• Eder, B., Melter, M., Gabler, V., Zant, R., & Knoppke, B. (2021). Risk factors associated with cognitive impairment in patients after pediatric liver transplantation. Pediatric Transplantation, 25(2), 1–11. https://doi.org/10.1111/petr.13879
   Web of Science ®Google Scholar
• Ee, L. C., Lloyd, O., Beale, K., Fawcett, J., & Cleghorn, G. J. (2014). Academic potential and cognitive functioning of long-term survivors after childhood liver transplantation. Pediatric Transplantation, 18(3), 272–279. https://doi.org/10.1111/petr.12246
   PubMed Web of Science ®Google Scholar
• Eghtesad, B., Kelly, D., & Fung, J. J. (2011). Liver Transplantation in Children. In R, Wyllie & J. Hyams (Eds.), Pediatric Gastrointestinal and Liver Disease (4th ed., pp. 853–865).
   Google Scholar
• Elias, J., Zimack, E., Sherwood, A., MacDonald, B., Lozano, N., Long, J., & Larsen, A. D. (2020). Do parents implement pediatric neuropsychological report recommendations? The Clinical Neuropsychologist, 35(6), 1117–1133. https://doi.org/10.1080/13854046.2020.1720298
   PubMed Web of Science ®Google Scholar
• Emre, S., & Umman, V. (2011). Split liver transplantation: An overview. Transplantation Proceedings, 43(3), 884–887. https://doi.org/10.1016/j.transproceed.2011.02.036
   PubMed Web of Science ®Google Scholar
• Falger, J., Latal, B., Landolt, M. A., Lehmann, P., Neuhaus, T. J., & Laube, G. F. (2008). Outcome after renal transplantation. Part I: Intellectual and motor performance. Pediatric Nephrology, 23(8), 1339–1345. https://doi.org/10.1007/s00467-008-0795-0
   PubMed Web of Science ®Google Scholar
• Feldmann, M., Bataillard, C., Ehrler, M., Ullrich, C., Knirsch, W., Gosteli-Peter, M., Held, U., & Latal, B. (2021). Cognitive and executive function in congenital heart disease: A meta-analysis. Pediatrics, 148(4). https://doi.org/10.1542/peds.2021-050875
   PubMed Web of Science ®Google Scholar
• Fredericks, E. M., Dore‐Stites, D., Well, A., Magee, J. C., Freed, G. L., Shieck, V., & James Lopez, M. (2010). Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatric Transplantation, 14(8), 944–953. https://doi.org/10.1111/j.1399-3046.2010.01349.x
   PubMed Web of Science ®Google Scholar
• Fredericks, E. M., Lopez, M. J., Magee, J. C., Shieck, V., & Opipari-Arrigan, L. (2007). Psychological functioning, nonadherence, and health outcomes after pediatric liver transplantation. American Journal of Transplantation, 7(8), 1974–1983. https://doi.org/10.1111/j.1600-6143.2007.01878.x
   PubMed Web of Science ®Google Scholar
• Garcia Guerra, G., Robertson, C. M. T., Alton, G. Y., Joffe, A. R., Cave, D. A., Dinu, I. A., Creighton, D. E., Ross, D. B., Rebeyka, I. M., & The Western Canadian Complex Pediatric Therapies Follow-Up Group. (2011). Neurodevelopmental outcome following exposure to sedative and analgesic drugs for complex cardiac surgery in infancy. Paediatric Anaesthesia, 21(9), 932–941.
   PubMed Web of Science ®Google Scholar
• Gaynor, J. W., Ittenbach, R. F., Calafat, A. M., Burnham, N. B., Bradman, A., Bellinger, D. C., Henretig, F. M., Wehrung, E. E., Ward, J. L., Russell, W. W., & Spray, T. L. (2018). Perioperative exposure to suspect neurotoxicants from medical devices in newborns with congenital heart defects. The Annals of Thoracic Surgery, 107(2), 567–572. https://doi.org/10.1016/j.athoracsur.2018.06.035
   PubMed Web of Science ®Google Scholar
• Gaynor, J. W., Stopp, C., Wypij, D., Andropoulos, D. B., Atallah, J., Atz, A. M., Beca, J., Donofrio, M. T., Duncan, K., Ghanayem, N. S., Goldberg, C. S., Hovels-Gurich, H., Ichida, F., Jacobs, J. P., Justo, R., Latal, B., Li, J. S., Mahle, W. T. … Newburger, J. W. (2015). Neurodevelopmental outcomes after cardiac surgery in infancy. Pediatrics, 135(5), 816–825. https://doi.org/10.1542/peds.2014-3825
   PubMed Web of Science ®Google Scholar
• Ghosh, P. S., Kwon, C., Klein, M., Corder, J., & Ghosh, D. (2014). Neurologic complications following pediatric renal transplantation. Journal of Child Neurology, 29(6), 793–798. https://doi.org/10.1177/0883073813490074
   PubMed Web of Science ®Google Scholar
• Gilleland, J., Amaral, S., Mee, L., & Blount, R. (2012). Getting ready to leave: Transition readiness in adolescent kidney transplant recipients. Journal of Pediatric Psychology, 37(1), 85–96. https://doi.org/10.1093/jpepsy/jsr049
   PubMed Web of Science ®Google Scholar
• Gilmour, S., Adkins, R., Liddell, G. A., Jhangri, G., & Robertson, C. M. (2009). Assessment of psychoeducational outcomes after pediatric liver transplant. American Journal of Transplantation, 9(2), 294–300. https://doi.org/10.1111/j.1600-6143.2008.02480.x
   PubMed Web of Science ®Google Scholar
• Gilmour, S. M., Sorensen, L. G., Anand, R., Yin, W., & Alonso, E. M. (2010). School outcomes in children registered in the Studies for Pediatric Liver Transplant (SPLIT) consortium. Liver Transplantation, 16(9), 1041–1048. https://doi.org/10.1002/lt.22120
   PubMed Web of Science ®Google Scholar
• Gipson, D. S., Hooper, S. R., Duquette, P. J., Wetherington, C. E., Stellwagen, K. K., Jenkins, T. L., & Ferris, M. E. (2006). Memory and executive functions in pediatric chronic kidney disease. Child Neuropsychology, 12(6), 391–405. https://doi.org/10.1080/09297040600876311
   PubMed Web of Science ®Google Scholar
• Gipson, D. S., Wetherington, C. E., Duquette, P. J., & Hooper, S. R. (2004). The nervous system and chronic kidney disease in children. Pediatric Nephrology, 19(8), 832–839. https://doi.org/10.1007/s00467-004-1532-y
   PubMed Web of Science ®Google Scholar
• Girouard, H. S., & Kovacs, A. H. (2020). Congenital heart disease: Education and employment considerations and outcomes. International Journal of Cardiology Congenital Heart Disease, 1, 1–6. https://doi.org/10.1016/j.ijcchd.2020.100005
   Google Scholar
• Gold, A., Rogers, A., Cruchley, E., Rankin, S., Parmar, A., Kamath, B. M., Avitzur, Y., & Ng, V. L. (2017). Corrigendum to “assessment of school readiness in chronic cholestatic liver disease: A pilot study examining children with and without liver transplantation. Canadian Journal of Gastroenterology and Hepatology, 2017, 3125082. https://doi.org/10.1155/2017/3125082
   Web of Science ®Google Scholar
• Goldschmidt, I., van Dick, R., Jacobi, C., Junge, N., Pfister, E., Richter, N., & Baumann, U. (2019). Impact of immunosuppression on executive functioning after pediatric liver transplantation: An observational cohort study. Journal of Pediatric Gastroenterology & Nutrition, 68(4), 480–487. https://doi.org/10.1097/MPG.0000000000002274
   PubMed Web of Science ®Google Scholar
• Gulleroglu, K., Baskin, E., Bayrakci, U. S., Aydogan, M., Alehan, F., Kantar, A., Karakayali, F., Moray, G., & Haberal, M. (2013). Neurocognitive functions in pediatric renal transplant patients. Transplantation Proceedings, 45(10), 3511–3513. https://doi.org/10.1016/j.transproceed.2013.08.105
   PubMed Web of Science ®Google Scholar
• Gungor, S., Kilic, B., Arslan, M., Selimoglu, M. A., Karabiber, H., & Yilmaz, S. (2017). Early and late neurological complications of liver transplantation in pediatric patients. Pediatric Transplantation, 21(3), 1–6. https://doi.org/10.1111/petr.12872
   PubMed Web of Science ®Google Scholar
• Gutierrez-Colina, A. M., Eaton, C. K., Lee, J. L., Reed-Knight, B., Loiselle, K., Mee, L. L., LaMotte, J., Liverman, R., & Blount, R. L. (2016). Executive functioning, barriers to adherence, and nonadherence in adolescent and young adult transplant recipients. Journal of Pediatric Psychology, 41(7), 759–767. https://doi.org/10.1093/jpepsy/jsv107
   PubMed Web of Science ®Google Scholar
• Haavisto, A., Korkman, M., Holmberg, C., Jalanko, H., & Qvist, E. (2012). Neuropsychological profile of children with kidney transplants. Nephrology Dialysis Transplantation, 27(6), 2594–2601. https://doi.org/10.1093/ndt/gfr650
   PubMed Web of Science ®Google Scholar
• Haavisto, A., Korkman, M., Jalanko, H., Holmberg, C., & Qvist, E. (2010). Neurocognitive function of pediatric heart transplant recipients. The Journal of Heart and Lung Transplantation: The Official Publication of the International Society for Heart Transplantation, 29(7), 764–770. https://doi.org/10.1016/j.healun.2010.02.008
   PubMed Web of Science ®Google Scholar
• Hackl, C., Schlitt, H. J., Melter, M., Knoppke, B., & Loss, M. (2015). Current developments in pediatric liver transplantation. World Journal of Hepatology, 7(11), 1509–1520. https://doi.org/10.4254/wjh.v7.i11.1509
   PubMedGoogle Scholar
• Hardy, K. K., Olson, K., Cox, S. M., Kennedy, T., & Walsh, K. S. (2017). Systematic review: A prevention-based model of neuropsychological assessment for children with medical illness. Journal of Pediatric Psychology, 42(8), 815–822. https://doi.org/10.1093/jpepsy/jsx060
   PubMed Web of Science ®Google Scholar
• Harshman, L. A., Johnson, R. J., Matheson, M. B., Kogon, A. J., Shinnar, S., Gerson, A. C., Warady, B. A., Furth, S. L., & Hooper, S. R. (2019). Academic achievement in children with chronic kidney disease: A report from the CKiD cohort. Pediatric Nephrology, 34(4), 689–696. https://doi.org/10.1007/s00467-018-4144-7
   PubMed Web of Science ®Google Scholar
• Heitzer, A. M., Ashford, J. M., Harel, B. T., Schembri, A., Swain, M. A., Wallace, J., Ness, K. K., Wang, F., Zhang, H., Merchant, T. E., Robinson, G. W., Gajjar, A., & Conklin, H. (2019). Computerized assessment of cognitive impairment among children undergoing radiation therapy for medulloblastoma. Journal of Neuro-Oncology, 141(2), 403–411. https://doi.org/10.1007/s11060-018-03046-2
   PubMed Web of Science ®Google Scholar
• Hinton, R. B., & Ware, S. M. (2017). Heart failure in pediatric patients with congenital heart disease. Circulation Research, 120(6), 978–994. https://doi.org/10.1161/CIRCRESAHA.116.308996
   PubMed Web of Science ®Google Scholar
• Hocking, M. C., Walsh, K. S., Hardy, K. K., & Conklin, H. M. (2021). Addressing neurocognitive late effects in pediatric cancer survivors: Current approaches and future opportunities. Journal of Clinical Oncology, 39(16), 1824–1833. https://doi.org/10.1200/JCO.20.02327
   PubMed Web of Science ®Google Scholar
• Holland, J. E., Cassidy, A. R., Stopp, C., White, M. T., Bellinger, D. C., Rivkin, M. J., Newburger, J. W., & DeMaso, D. R. (2017). Psychiatric disorders and function in adolescents with tetralogy of fallot. The Journal of Pediatrics, 187, 165–173. https://doi.org/10.1016/j.jpeds.2017.04.048
   PubMed Web of Science ®Google Scholar
• Hooper, S. R., Gerson, A. C., Butler, R. W., Gipson, D. S., Mendley, S. R., Lande, M. B., Shinnar, S., Wentz, A., Matheson, M., Cox, C., Furth, S. L., & Warady, B. A. (2011). Neurocognitive functioning of children and adolescents with mild-to-moderate chronic kidney disease. Clinical Journal of the American Society of Nephrology, 6(8), 1824–1830. https://doi.org/10.2215/CJN.09751110
   PubMed Web of Science ®Google Scholar
• Hooper, S. R., Gerson, A. C., Johnson, R. J., Mendley, S. R., Shinnar, S., Lande, M. B., Matheson, M. B., Gipson, D. S., Morgenstern, B., Warady, B. A., & Furth, S. L. (2016). Neurocognitive, social-behavioral, and adaptive functioning in preschool children with mild to moderate kidney disease. Journal of Developmental & Behavioral Pediatrics, 37(3), 231–238. https://doi.org/10.1097/DBP.0000000000000267
   PubMed Web of Science ®Google Scholar
• Icard, P., Hooper, S. R., Gipson, D. S., & Ferris, M. E. (2010). Cognitive improvement in children with CKD after transplant. Pediatric Transplantation, 14(7), 887–890. https://doi.org/10.1111/j.1399-3046.2010.01359.x
   PubMed Web of Science ®Google Scholar
• Janvier, A., Bourque, C. J., Dahan, S., Robson, K., & Barrington, K. J. (2019). Integrating parents in neonatal and pediatric research. Neonatology, 115(4), 283–291. https://doi.org/10.1159/000492502
   PubMed Web of Science ®Google Scholar
• Jassal, Y. R., Christofferson, E. S., Everitt, M. D., & Wolfe, K. R. (2021). Specific patterns of executive functioning weaknesses among children after heart transplant. Pediatric Transplantation, 25(6), 1–12. https://doi.org/10.1111/petr.14033
   Web of Science ®Google Scholar
• Joffe, A. R., Wong, K., Bond, G. Y., Khodayari Moez, E., Acton, B. V., Dinu, I. A., Yap, J. Y. K., & Robertson, C. M. T. (2020). Kindergarten-age neurocognitive, functional, and quality-of-life outcomes after liver transplantation at under 6 years of age. Pediatric Transplantation, 24(2), 1–10. https://doi.org/10.1111/petr.13624
   Web of Science ®Google Scholar
• Johnson, R. J., & Harshman, L. A. (2021). Neurocognition in pediatric chronic kidney disease: A review of data from the Chronic Kidney Disease in Children (CKiD) study. Seminars in Nephrology, 41(5), 446–454. https://doi.org/10.1016/j.semnephrol.2021.09.007
   PubMed Web of Science ®Google Scholar
• Johnson, R. J., & Warady, B. A. (2013). Long-term neurocognitive outcomes of patients with end-stage renal disease during infancy. Pediatric Nephrology, 28(8), 1283–1291. https://doi.org/10.1007/s00467-013-2458-z
   PubMed Web of Science ®Google Scholar
• Joshee, P., Wood, A. G., Wood, E. R., & Grunfeld, E. A. (2018). Meta-analysis of cognitive functioning in patients following kidney transplantation. Nephrology, Dialysis, Transplantation: Official Publication of the European Dialysis and Transplant Association - European Renal Association, 33(7), 1268–1277. https://doi.org/10.1093/ndt/gfx240
   PubMed Web of Science ®Google Scholar
• Kahana, S. Y., Frazier, T. W., & Drotar, D. (2008). Preliminary quantative investigation of predictors of treatment non-adherence in pediatric transplantation: A brief report. Pediatric Transplantation, 12(6), 656–660. https://doi.org/10.1111/j.1399-3046.2007.00864.x
   PubMed Web of Science ®Google Scholar
• Kaller, T., Langguth, N., Petermann, F., Ganschow, R., Nashan, B., & Schulz, K. H. (2013). Cognitive performance in pediatric liver transplant recipients. American Journal of Transplantation, 13(11), 2956–2965. https://doi.org/10.1111/ajt.12408
   PubMed Web of Science ®Google Scholar
• Karsdorp, P. A., Everaerd, W., Kindt, M., & Mulder, B. J. M. (2007). Psychological and cognitive functioning in children and adolescents with congenital heart disease: A meta-analysis. Journal of Pediatric Psychology, 32(5), 527–541. https://doi.org/10.1093/jpepsy/jsl047
   PubMed Web of Science ®Google Scholar
• Katz, D. T., Torres, N. S., Chatani, B., Gonzalez, I. A., Chandar, J., Miloh, T., Rusconi, P., & Garcia, J. (2020). Care of pediatric solid organ transplant recipients: An overview for primary care providers. Pediatrics, 146(6). https://doi.org/10.1542/peds.2020-0696
   Web of Science ®Google Scholar
• Killian, M. O., Schuman, D. L., Mayersohn, G. S., & Triplett, K. N. (2018). Psychosocial predictors of medication non-adherence in pediatric organ transplantation: A systematic review. Pediatric Transplantation, 22(4), e13188. https://doi.org/10.1111/petr.13188
   PubMed Web of Science ®Google Scholar
• Kim, J. J., & Marks, S. D. (2014). Long-term outcomes of children after solid organ transplantation. Clinics, 69(SUPPL.1), 28–38. https://doi.org/10.6061/clinics/2014(Sup01)06
   PubMed Web of Science ®Google Scholar
• Kim, S., Van Zwieten, A., Lorenzo, J., Khalid, R., Lah, S., Chen, K., Didsbury, M., Francis, A., Mctaggart, S., Walker, A., Mackie, F. E., Prestidge, C., Teixeira-Pinto, A., Tong, A., Blazek, K., Barton, B., Craig, J. C., & Wong, G. (2022). Cognitive and academic outcomes in children with chronic kidney disease. Pediatric Nephrology, 37(11), 2715–2724. https://doi.org/10.1007/s00467-022-05499-0
   PubMed Web of Science ®Google Scholar
• Koushik, N. S., McArthur, S. F., & Baird, A. D. (2010). Adult chronic kidney disease: Neurocognition in chronic renal failure. Neuropsychology Review, 20(1), 33–51. https://doi.org/10.1007/s11065-009-9110-5
   PubMed Web of Science ®Google Scholar
• Kupferman, J. C., Matheson, M. B., Lande, M. B., Flynn, J. T., Furth, S., Warady, B. A., & Hooper, S. R. (2020). Increased history of ischemic stroke and decreased neurocognitive performance in children with chronic kidney disease. Pediatric Nephrology, 35(7), 1315–1321. https://doi.org/10.1007/s00467-020-04503-9
   PubMed Web of Science ®Google Scholar
• Larosa, C., Jorge Baluarte, H., & Meyers, K. E. C. (2011). Outcomes in pediatric solid-organ transplantation. Pediatric Transplantation, 15(2), 128–141. https://doi.org/10.1111/j.1399-3046.2010.01434.x
   PubMed Web of Science ®Google Scholar
• Lee, J. M., Jung, Y. K., Bae, J. H., Yoon, S. A., Kim, J. H., Choi, Y. R., Hyeyoung, K., Lee, K., Ahn, H. Y., Kim, J. W., Shin, M., Suh, K., Ha, I., Cheong, H., Kang, H. G., & Yi, N. J. (2017). Delayed transplantation may affect intellectual ability in children. Pediatrics International, 59(10), 1080–1086. https://doi.org/10.1111/ped.13369
   PubMed Web of Science ®Google Scholar
• Licht, D. J., Shera, D. M., Clancy, R. R., Wernovsky, G., Montenegro, L. M., Nicolson, S. C., Zimmerman, R. A., Spray, T. L., Gaynor, W., & Vossough, A. (2009). Brain maturation is delayed in infants with complex congenital heart defects. The Journal of Thoracic and Cardiovascular Surgery, 137(3), 529–536. discussion 536-7. https://doi.org/10.1016/j.jtcvs.2008.10.025.
   PubMed Web of Science ®Google Scholar
• Limond, J., Adlam, A.-L. R., & Cormack, M. (2014). A model for pediatric neurocognitive interventions: Considering the role of development and mautriation in rehabilitation planning. The Clinical Neuropsychologist, 28(2), 181–198. https://doi.org/10.1080/13854046.2013.873083
   PubMed Web of Science ®Google Scholar
• Limperopoulos, C., Tworetzky, W., McElhinney, D. B., Newburger, J. W., Brown, D. W., Robertson, R. L., Guizard, N., McGrath, E., Geva, J., Annese, D., Dunbar-Masterson, C., Trainor, B., Laussen, P. C., & du Plessis, A. J. (2010). Brain volume and metabolism in fetuses with congenital heart disease: Evaluation with quantitative magnetic resonance imaging and spectroscopy. Circulation, 121(1), 26–33. https://doi.org/10.1161/CIRCULATIONAHA.109.865568
   PubMed Web of Science ®Google Scholar
• Lipshultz, S. E., Law, Y. M., Asante-Korang, A., Austin, E. D., Dipchand, A. I., Everitt, M. D., Hsu, D. T., Lin, K. Y., Price, J. F., Wilkinson, J. D., & Colan, S. D. (2019). Cardiomyopathy in children: Classification and diagnosis: A scientific statement from the American Heart Association. Circulation, 140(1). https://doi.org/10.1161/CIR.0000000000000682
   PubMed Web of Science ®Google Scholar
• Lisanti, A. J., Vittner, D., Medoff-Cooper, B., Fogel, J., Wernovsky, G., & Butler, S. (2018). Individualized family-centered developmental care. The Journal of Cardiovascular Nursing, 34(1), 85–93. https://doi.org/10.1097/JCN.0000000000000546
   Google Scholar
• Lovett, B. J., & Nelson, J. M. (2021). Systematic review: Educational accommodations for children and adolescents with attention-deficit/hyperactivity disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 60(4), 448–457. https://doi.org/10.1016/j.jaac.2020.07.891
   PubMed Web of Science ®Google Scholar
• Mahle, W. T., Visconti, K. J., Freier, M. C., Kanne, S. M., Hamilton, W. G., Sharkey, A. M., Chinnock, R. E., Jenkins, K. J., Isquith, P. K., Burns, T. G., & Jenkins, P. C. (2006). Relationship of surgical approach to neurodevelopmental outcomes in hypoplastic left heart syndrome. Pediatrics, 117(1), e90–e97. https://doi.org/10.1542/peds.2005-0575
   PubMed Web of Science ®Google Scholar
• Marino, B. S., Lipkin, P. H., Newburger, J. W., Peacock, G., Gerdes, M., Gaynor, J. W., Mussatto, K. A., Uzark, K., Goldberg, C. S., Johnson, W. H., Jr., Li, J., Smith, S. E., Bellinger, D. C., & Mahle, W. T. (2012). Neurodevelopmental outcomes in children with complex congenital heart disease: Evaluation and management. A scientific statement from the American heart association. Circulation2, 126(9), 1143–1172. https://doi.org/10.1161/CIR.0b013e318265ee8a
   PubMed Web of Science ®Google Scholar
• Martinez-Sanchis, S., Bernal, M. C., Montagud, J. V., Candela, G., Crespo, J., Sancho, A., & Pallardo, L. M. (2011). Effects of immunosupressive drugs on the cognitive functioning of renal transplant recipients: A pilot study. Journal of Clinical and Experimental Neuropsychology, 33(9), 1016–1024. https://doi.org/10.1080/13803395.2011.595396
   PubMed Web of Science ®Google Scholar
• McCormick, A. D., Schumacher, K. R., Zamberlan, M., Uzark, K., Yu, S., Lowery, R., Rottach, N., & Cousino, M. K. (2020). Generalized and specific anxiety in adolescents following heart transplant. Pediatric Transplantation, 24(1), e13647. https://doi.org/10.1111/petr.13647
   PubMed Web of Science ®Google Scholar
• Menteer, J., MacEy, P. M., Woo, M. A., Panigrahy, A., & Harper, R. M. (2010). Central nervous system changes in pediatric heart failure: A volumetric study. Pediatric Cardiology, 31(7), 969–976. https://doi.org/10.1007/s00246-010-9730-9
   PubMed Web of Science ®Google Scholar
• Molnar-Varga, M., Novak, M., Szabo, A. J., Kelen, K., Streja, E., Remport, A., Mucsi, I., Molnar, M. Z., & Reusz, G. (2016). Neurocognitive functions of pediatric kidney transplant recipients. Pediatric Nephrology, 31(9), 1531–1538. https://doi.org/10.1007/s00467-016-3380-y
   PubMed Web of Science ®Google Scholar
• Moosburner, S., Wiering, L., Gül-Klein, S., Ritschl, P., Dziodzio, T., Raschzok, N., Witzel, C., Gratopp, A., Henning, S., Bufler, P., Schmelzle, M., Lurje, G., Schoning, W., Pratschke, J., Globke, B., & Öllinger, R. (2022). Over 30 years of pediatric liver transplantation at the Charité—Universitätsmedizin Berlin. Journal of Clinical Medicine, 11(4), 900. https://doi.org/10.3390/jcm11040900
   PubMed Web of Science ®Google Scholar
• Morton, P. D., Ishibashi, N., & Jonas, R. A. (2017). Neurodevelopmental abnormalities and congenital heart disease. Circulation Research, 120(6), 960–977. https://doi.org/10.1161/CIRCRESAHA.116.309048
   PubMed Web of Science ®Google Scholar
• Moser, J. J., Veale, P. M., McAllister, D. L., Archer, D. P., & Davidson, A. (2013). A systematic review and quantitative analysis of neurocognitive outcomes in children with four chronic illnesses. Paediatric Anaesthesia, 23(11), 1084–1096. https://doi.org/10.1111/pan.12255
   PubMed Web of Science ®Google Scholar
• Mrakotsky, C., Williams, T. S., Shapiro, K. A., & Westmacott, R. (2022). Rehabilitation in pediatric stroke: Cognition and behavior. Seminars in Pediatric Neurology, 44, 1–10. https://doi.org/10.1016/j.spen.2022.100998
   Web of Science ®Google Scholar
• Murase, S., Okazaki, S., Yoshioka, D., Watanabe, K., Gon, Y., Todo, K., Sasaki, T., Sakaguchi, M., Misumi, Y., Toda, K., Sawa, Y., & Mochizuki, H. (2020). Abnormalities of brain imaging in patients after left ventricular assist device support following explantation. The Journal of Heart and Lung Transplantation, 39(3), 220–227. https://doi.org/10.1016/j.healun.2019.11.019
   PubMed Web of Science ®Google Scholar
• Murray, P. D., Dobbels, F., Lonsdale, D. C., & Harden, P. N. (2014). Impact of end-stage kidney disease on academic achievement and employment in young adults: A mixed methods study. Journal of Adolescent Health, 55(4), 505–512. https://doi.org/10.1016/j.jadohealth.2014.03.017
   PubMed Web of Science ®Google Scholar
• Mussatto, K. A., Hoffmann, R. G., Hoffman, G. M., Tweddell, J. S., Bear, L., Cao, Y., & Brosig, C. (2014). Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics, 133(3), e570–7. https://doi.org/10.1542/peds.2013-2309
   PubMed Web of Science ®Google Scholar
• Ng, V. L., Sorensen, L. G., Alonoso, E. M., Fredericks, E. M., Ye, W., Moore, J., Karpen, S. J., Shneider, B. D., Molleston, J. P., Bezerra, J. A., Murray, K. F., Loomes, K. M., Rosenthal, P., Squires, R. H., Wang, K., Arnon, R., Schwarz, K. B., Turmelle, Y. P. … ChiLDReN. (2018). Neurodevelopmental outcome of young children with biliary atresia and native liver: Results from the ChiLDReN study. Pediatric Oncall January, 196, 139–147.
   Google Scholar
• O’Carroll, R. E. (2008). Neuropsychological aspects of liver disease and its treatment. Neurochemical Research, 33(4), 683–690. https://doi.org/10.1007/s11064-007-9522-7
   PubMed Web of Science ®Google Scholar
• Oja, S. S., Saransaari, P., & Korpi, E. R. (2017). Neurotoxicity of ammonia. Neurochemical Research, 42(3), 713–720. https://doi.org/10.1007/s11064-016-2014-x
   PubMed Web of Science ®Google Scholar
• Olivia, M., Singh, T. P., Gauvreau, K., VanderPluym, C. J., Bastardi, H. J., & Almond, C. S. (2013). Impact of medication non-adherence on survival after pediatric heart transplantation in the USA. The Journal of Heart and Lung Transplantation, 32(9), 881–888. https://doi.org/10.1016/j.healun.2013.03.008
   PubMed Web of Science ®Google Scholar
• Olmsted, M. G., & Drozd, E. M. (2020). U.S. news & world report best children’s hospitals 2020 methodology.
   Google Scholar
• Organ Procurement and Transplantation Network. (2021). National data 2021. https://optn.transplant.hrsa.gov/
   Google Scholar
• Panigrahy, A., Schmithorst, V. J., Wisnowski, J. L., Watson, C. G., Bellinger, D. C., Newburger, J. W., & Rivkin, M. J. (2015). Relationship of white matter network topology and cognitive outcome in adolescents with d-transposition of the great arteries. NeuroImage: Clinical, 7, 438–448. https://doi.org/10.1016/j.nicl.2015.01.013
   PubMed Web of Science ®Google Scholar
• Polito, A., Barrett, C. S., Rycus, P. T., Favia, I., Cogo, P. E., & Thiagarajan, R. R. (2015). Neurologic injury in neonates with congenital heart disease during extracorporeal membrane oxygenation. ASAIO Journal, 61(1), 43–48. https://doi.org/10.1097/MAT.0000000000000151
   PubMed Web of Science ®Google Scholar
• Popel, J., Joffe, R., Acton, B. V., Bond, G. Y., Joffe, A. R., Midgley, J., Robertson, C. M. T., Sauve, R. S., & Morgan, C. J. (2019). Neurocognitive and functional outcomes at 5 years of age after renal transplant in early childhood. Pediatric Nephrology, 34(5), 889–895. https://doi.org/10.1007/s00467-018-4158-1
   PubMed Web of Science ®Google Scholar
• Posfay-Barbe, K., Barbe, R., Wetterwald, R., Belli, D., & McLin, V. (2013). Parental functioning improves the developmental quotient of pediatric liver transplant recipients. Pediatric Transplantation, 17(4), 355–361. https://doi.org/10.1111/petr.12080
   PubMed Web of Science ®Google Scholar
• Pruitt, A. A., Rosenfeld, M. R., & Graus, F. (2013). Neurological complications of solid organ transplantation. The Neurohospitalist, 3(3), 152–166. https://doi.org/10.1177/1941874412466090
   PubMedGoogle Scholar
• Rea, K. E., Cushman, G. K., Quast, L. F., Stolz, M. G., Mee, L. L., George, R. P., & Blount, R. L. (2021). Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives. Patient Education and Counseling, 104(8), 2089–2097. https://doi.org/10.1016/j.pec.2021.01.027
   PubMed Web of Science ®Google Scholar
• Reed-Knight, B., Blount, R. L., & Gilleland, J. (2014). The transition of health care responsibility from parents to youth diagnosed with chronic illness: A developmental systems perspective. Families, Systems, & Health, 32(2), 219–234. https://doi.org/10.1037/fsh0000039
   PubMed Web of Science ®Google Scholar
• Reed-Knight, B., Lee, J. L., Cousins, L. A., & Mee, L. L. (2015). Intellectual and academic performance in children undergoing solid organ pretransplant evaluation. Pediatric Transplantation, 19(2), 229–234. https://doi.org/10.1111/petr.12389
   PubMed Web of Science ®Google Scholar
• Resch, C., Rosema, S., Hurks, P., de Kloet, A., & van Heugten, C. (2018). Searching for effective components of cognitive rehabilitation for children and adolescents with acquired brain injury: A systematic review. Brain Injury, 32(6), 679–692. https://doi.org/10.1080/02699052.2018.1458335
   PubMed Web of Science ®Google Scholar
• Richards, C. T., Crawley, L. M., & Magnus, D. (2009). Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: Inconsistencies in standards across major pediatric transplant centers. Pediatric Transplantation, 13(7), 843–850. https://doi.org/10.1111/j.1399-3046.2008.01072.x
   PubMed Web of Science ®Google Scholar
• Riehle-Colarusso, T., Autry, A., Razzaghi, H., Boyle, C. A., Mahle, W. T., Van Naarden Braun, K., & Correa, A. (2015). Congenital heart defects and receipt of special education services. Pediatrics, 136(3), 496–504. https://doi.org/10.1542/peds.2015-0259
   PubMed Web of Science ®Google Scholar
• Rodijk, L. H., Den Heijer, A. E., Hulscher, J. B. F., Verkade, H. J., De Kleine, R. H. J., & Bruggink, J. L. M. (2018). Neurodevelopmental outcomes in children with liver diseases: A systematic review. Journal of Pediatric Gastroenterology and Nutrition, 67(2), 157–168. https://doi.org/10.1097/MPG.0000000000001981
   PubMed Web of Science ®Google Scholar
• Rollins, C. K., Asaro, L. A., Akhondi-Asl, A., Kussman, B. D., Rivkin, M. J., Bellinger, D. C., Warfield, S. K., Wypij, D., Newburgery, J. W., & Soul, J. S. (2016). White matter volume predicts language development in congenital heart disease. The Journal of Pediatrics, 181, 42–48.e2. https://doi.org/10.1016/j.jpeds.2016.09.070
   PubMed Web of Science ®Google Scholar
• Rollins, C. K., Ortinau, C. M., Stopp, C., Friedman, K. G., Tworetzky, W., Gagoski, B., Velasco-Annis, C., Afacan, O., Vasung, L., Beaute, J. I., Rofeberg, V., Estroff, J. A., Grant, P. E., Soul, J. S., Yang, E., Wypij, D., Gholipour, A., Warfield, S. K., & Newburger, J. W. (2021). Regional brain growth trajectories in fetuses with congenital heart disease. Annals of Neurology, 89(1), 143–157. https://doi.org/10.1002/ana.25940
   PubMed Web of Science ®Google Scholar
• Rollins, C. K., Watson, C. G., Asaro, L. A., Wypij, D., Vajapeyam, S., Bellinger, D. C., DeMaso, D. R., Robertson, R. L., Newburger, J. W., & Rivkin, M. J. (2014). White matter microstructure and cognition in adolescents with congenital heart disease. The Journal of Pediatrics, 165(5), 936–944.e2. https://doi.org/10.1016/j.jpeds.2014.07.028
   PubMed Web of Science ®Google Scholar
• Sanz, J. H., Anixt, J., Bear, L., Basken, A., Beca, J., Marino, B. S., Mussatto, K. A., Nembhard, W. N., Sadhwani, A., Sananes, R., Shekerdemian, L. S., Sood, E., Uzark, K., Willen, E., & Ilardi, D. (2021). Characterization of neurodevelopmental and psychological outcomes in congenital heart disease: A research agenda and recommendations from the cardiac neurodevelopmental outcome collaborative. Cardiology in the Young, 31(6), 876–887. https://doi.org/10.1017/S1047951121002146
   PubMed Web of Science ®Google Scholar
• Sawyer, S. M., Blair, S., & Bowes, G. (1997). Chronic illness in adolescents: Transfer or transition to adult services? Journal of Paediatrics and Child Health, 33(2), 88–90. https://doi.org/10.1111/j.1440-1754.1997.tb01005.x
   PubMed Web of Science ®Google Scholar
• Schaffer, Y., & Geva, R. (2016). Memory outcomes following cognitive interventions in children with neurological deficits: A review with a focus on under-studied populations. Neuropsychological Rehabilitation, 26(2), 286–317. https://doi.org/10.1080/09602011.2015.1016537
   PubMed Web of Science ®Google Scholar
• Schneider, S. M., Kielstein, J. T., Braverman, J., & Novak, M. (2015). Cognitive function in patients with chronic kidney disease: Challenges in neuropsychological assessments. Seminars in Nephrology, 35(4), 304–310. https://doi.org/10.1016/j.semnephrol.2015.06.002
   PubMed Web of Science ®Google Scholar
• Shapiro, R., & Sarwal, M. M. (2010). Pediatric kidney transplantation. Pediatric Clinics of North America, 2010(2), 393–400. https://doi.org/10.1016/j.pcl.2010.01.016
   Google Scholar
• Shaw, R. J., Palmer, L., Blasey, C., & Sarwal, M. (2003). A typology of non-adherence in pediatric renal transplant recipients. Pediatric Transplantation, 7(6), 489–493. https://doi.org/10.1046/j.1397-3142.2003.00117.x
   PubMed Web of Science ®Google Scholar
• Shellmer, D. A., Devito Dabbs, A., Dew, M. A., Noll, R. B., Feldman, H., Strauss, K. A., Morton, D. H., Vockley, J., & Mazariegos, G. V. (2011). Cognitive and adaptive functioning after liver transplantation for maple syrup urine disease: A case series. Pediatric Transplantation, 15(1), 58–64. https://doi.org/10.1111/j.1399-3046.2010.01411.x
   PubMed Web of Science ®Google Scholar
• Shellmer, D. A., Devito Dabbs, A., Dew, M. A., Terhorst, L., Noll, R. B., Kosmach-Park, B., & Mazariegos, G. (2013). Adaptive functioning and its correlates after intestine and liver transplantation. Pediatric Transplantation, 17(1), 48–54. https://doi.org/10.1111/petr.12011
   PubMed Web of Science ®Google Scholar
• Siciliano, R. E., Prussien, K. V., Lee, C. A., Patel, N. J., Murphy, L. K., Compas, B. E., & Jordan, L. C. (2019). Cognitive function in pediatric hypoplastic left heart syndrome: Systematic review and meta-analysis. Journal of Pediatric Psychology, 44(8), 937–947. https://doi.org/10.1093/jpepsy/jsz007
   PubMed Web of Science ®Google Scholar
• Singh, T. P., Cherikh, W. S., Hsich, E., Chambers, D. C., Harhay, M. O., Hayes, D., Khush, K. K., Perch, M., Potena, L., Sadavarte, A., Toll, A. E., Zuckermann, A., & Stehlik, J. (2021). The international thoracic organ transplant registry of the international society for heart and lung transplantation: Twenty-fourth pediatric heart transplantation report — 2021; focus on recipient characteristics. The Journal of Heart and Lung Transplantation, 40(10), 1050–1059. https://doi.org/10.1016/j.healun.2021.07.022
   PubMedGoogle Scholar
• Slickers, J., Duquette, P., Hooper, S., & Gipson, D. (2007). Clinical predictors of neurocognitive deficits in children with chronic kidney disease. Pediatric Nephrology, 22(4), 565–572. https://doi.org/10.1007/s00467-006-0374-1
   PubMed Web of Science ®Google Scholar
• Sorensen, L. G., Neighbors, K., Martz, K., Zelko, F., Bucuvalas, J. C., & Alonso, E. M. (2011). Cognitive and academic outcomes after pediatric liver transplantation: Functional outcomes group (FOG) results. American Journal of Transplantation, 11(2), 303–311. https://doi.org/10.1111/j.1600-6143.2010.03363.x
   PubMed Web of Science ®Google Scholar
• Sorensen, L., Neighbors, K., Martz, K., Zelko, F., Bucuvalas, J. C., Alonso, E., & SPLIT, F. O. G. (2014). Longitudinal study of cognitive and academic outcomes after pediatric liver transplantation. The Journal of Pediatrics, 165(1), 65–72. https://doi.org/10.1016/j.jpeds.2014.03.032
   PubMed Web of Science ®Google Scholar
• Squires, R. H., Ng, V., Romero, R., Ekong, U., Hardikar, W., Emre, S., & Mazariegos, G. V. (2014). Evaluation of the pediatric patient for liver transplantation: 2014 practice guideline by the American Association for the Study of Liver Diseases, American Society of Transplantation and the North American Society for Pediatric Gastroeneterology, Hepatol. Journal of Pediatric Gastroenterology and Nutrition, 59(1), 112–131. https://doi.org/10.1097/MPG.0000000000000431
   PubMed Web of Science ®Google Scholar
• Statter, M. B., Noritz, G., Macauley, R. C., Basak, R., Geis, G. M., Laventhal, N. T., Opel, D. J., Sexson, W. R., Kuo, D. Z., Apkon, S., Brei, T. J., Davidson, L. F., Davis, B. E., Ellerbeck, K. A., Hyman, S. L., Leppert, M. O., Stille, C. J., & Yin, L. (2020). Children with intellectual and developmental disabilities as organ transplantation recipients. Pediatrics, 145(5), e20200625. https://doi.org/10.1542/PEDS.2020-0625
   PubMed Web of Science ®Google Scholar
• Stein, M. L., Bruno, J. L., Konopacki, K. L., Kesler, S., Reinhartz, O., & Rosenthal, D. (2013). Cognitive outcomes in pediatric heart transplant recipients bridged to transplantation with ventricular assist devices. The Journal of Heart and Lung Transplantation, 32(2), 212–220. https://doi.org/10.1016/j.healun.2012.11.006
   PubMed Web of Science ®Google Scholar
• Sun, Y., Jia, L., Yu, H., Zhu, M., Sheng, M., & Yu, W. (2019). The effect of pediatric living donor liver transplantation on neurocognitive outcomes in children. Annals of Transplantation, 24, 446–453. https://doi.org/10.12659/AOT.914164
   PubMed Web of Science ®Google Scholar
• Talcott, J. B., Beath, S. V., Patel, T., Griffiths, G., & Kelly, D. A. (2019). Long-term effects of cholestatic liver disease in childhood on neuropsychological outcomes and neurochemistry. Journal of Pediatric Gastroenterology and Nutrition, 69(2), 145–151. https://doi.org/10.1097/MPG.0000000000002380
   PubMed Web of Science ®Google Scholar
• Thevenin, D. M., Baker, A., Kato, T., Tzakis, A., Fernandez, M., & Dowling, M. (2006). Neuodevelopmental outcomes for children transplanted under the age of 3 years. Transplantation Proceedings, 38(6), 1692–1693. https://doi.org/10.1016/j.transproceed.2006.05.037
   PubMed Web of Science ®Google Scholar
• Thompson, T., Coleman, J. M., Riley, K., Snider, L. A., Howard, L. J., Sansone, S. M., & Hessl, D. (2018). Standardized assessment accommodations for individuals with intellectual disability. Contemporary School Psychology, 22(4), 443–457. https://doi.org/10.1007/s40688-018-0171-4
   PubMedGoogle Scholar
• Tindall, S., Rothermel, R. R., Delamater, A., Pinsky, W., & Klein, M. D. (1999). Neuropsychological abilities of children with cardiac disease treated with extracorporeal membrane oxygenation. Developmental Neuropsychology, 16(1), 101–115. https://doi.org/10.1207/S15326942DN160106
   Web of Science ®Google Scholar
• Tjaden, L. A., Grootenhuis, M. A., Noordzij, M., & Groothoff, J. W. (2016). Health-related quality of life in patients with pediatric onset of end-stage renal disease: State of the art and recommendations for clinical practice. Pediatric Nephrology, 31(10), 1579–1591. https://doi.org/10.1007/s00467-015-3186-3
   PubMedGoogle Scholar
• Tornqvist, J., Van Broeck, N., Finkenauer, C., Rosati, R., Schwering, K., Hayez, J., Janssen, M., & Otte, J. (1999). Long-term psychosocial adjustment following pediatric liver transplantation. Pediatric Transplantation, 3(2), 115–125. https://doi.org/10.1034/j.1399-3046.1999.00026.x
   PubMedGoogle Scholar
• Urschel, S., Bond, G. Y., Dinu, I. A., Moradi, F., Conway, J., Garcia-Guerra, G., Acton, B. V., Joffe, A. R., AlAklabi, M., Rebeyka, I. M., & Robertson, C. M. T. (2018). Neurocognitive outcomes after heart transplantation in early childhood. The Journal of Heart and Lung Transplantation, 37(6), 740–748. https://doi.org/10.1016/j.healun.2017.12.013
   PubMed Web of Science ®Google Scholar
• Uzark, K., Spicer, R., & Beebe, D. W. (2009). Neurodevelopmental outcomes in pediatric heart transplant recipients. The Journal of Heart and Lung Transplantation, 28(12), 1306–1311. https://doi.org/10.1016/j.healun.2009.05.002
   PubMed Web of Science ®Google Scholar
• Verghese, P. S. (2017). Pediatric kidney transplantation: A historical review. Pediatric Research, 81(1), 259–264. https://doi.org/10.1038/pr.2016.207
   PubMed Web of Science ®Google Scholar
• Vivante, A., & Hildebrandt, F. (2016). Exploring the genetic basis of early-onset chronic kidney disease. Nature Reviews Neurology, 12(3), 133–146. https://doi.org/10.1038/nrneph.2015.205
   PubMedGoogle Scholar
• Warady, B. A., & Chadha, V. (2007). Chronic kidney disease: The global perspective. Pediatric Nephrology, 22(12), 1999–2009. https://doi.org/10.1007/s00467-006-0410-1
   PubMed Web of Science ®Google Scholar
• Watson, C. G., Asaro, L. A., Wypij, D., Robertson, R. L., Newburger, J. W., & Rivkin, M. J. (2016). Altered gray matter in adolescents with d-TGA. Journal of Pediatrics, 169, 36–43.e1. https://doi.org/10.1016/j.jpeds.2015.09.084
   PubMed Web of Science ®Google Scholar
• Watson, C. G., Stopp, C., Wypij, D., Bellinger, D. C., Newburger, J. W., & Rivkin, M. J. (2018). Altered white matter microstructure correlates with IQ and processing speed in children and adolescents post-fontan. The Journal of Pediatrics, 200, 140–149.e4. https://doi.org/10.1016/j.jpeds.2018.04.022
   PubMed Web of Science ®Google Scholar
• Weissberg Benchell, J., Zielinski, T., Rodgers, S., Greenley, R., Askenazi, D., Goldstein, S., Fredericks, E. M., Mcdiarmid, S., Williams, L., Limberes, C. A., Tuzinkiewicz, K., Lerret, S., Alonso, E. M., & Varni, J. W. (2010). Pediatric health-related quality of life: Feasibility, reliability, and validity of the PedsQL transplant module. American Journal of Transplantation, 10(7), 1677–1685. https://doi.org/10.1111/j.1600-6143.2010.03149.x
   PubMed Web of Science ®Google Scholar
• White, P. H., Cooley, W. C., Boudreau, A. D. A., Cyr, M., Davis, B. E., Dreyfus, D. E., Forlenza, E., Friedland, A., Greenlee, C., Mann, M., McManus, M., Meleis, A. I., & Pickler, L. (2018). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 142(5), e20182587. https://doi.org/10.1542/peds.2018-2587
   PubMed Web of Science ®Google Scholar
• Wightman, A., Diekema, D., & Goldberg, A. (2018). Consideration of children with intellectual disability as candidates for solid organ transplantation: A practice in evolution. Pediatric Transplantation, 22(1), 1–4. https://doi.org/10.1111/petr.13091
   Web of Science ®Google Scholar
• Winterberg, P. D., & Garro, R. (2019). Long-term outcomes of kidney transplantation in children. Pediatric Clinics of North America, 66(1), 269–280. https://doi.org/10.1016/j.pcl.2018.09.008
   PubMed Web of Science ®Google Scholar
• Wolfe, K. R., Hutaff Lee, C., & Wilkening, G. (2022). Neuropsychological screening in pediatric multidisciplinary clinics: Group characteristics and predictive utility. Archives of Clinical Neuropsychology, 37(4), 789–797. https://doi.org/10.1093/arclin/acab090
   PubMed Web of Science ®Google Scholar
• Wolfe, K. R., Kelly, S. L., Steinberg, E., Pliego, J., & Everitt, M. D. (2020). Predictors of neuropsychological functioning and medication adherence in pediatric heart transplant recipients referred for neuropsychological evaluation. Pediatric Transplantation, 24(1), 1–7. https://doi.org/10.1111/petr.13615
   Web of Science ®Google Scholar
• Wray, J., & Radley-Smith, R. (2006). Longitudinal assessment of psychological functioning in children after heart or heart-lung transplantation. Journal of Heart and Lung Transplantation, 25(3), 345–352. https://doi.org/10.1016/j.healun.2005.09.018
   PubMed Web of Science ®Google Scholar
• Wray, J., & Radley-Smith, R. (2010). Cognitive and behavioral functioning of children listed for heart and/or lung transplantation. American Journal of Transplantation, 10(11), 2527–2535. https://doi.org/10.1111/j.1600-6143.2010.03282.x
   PubMed Web of Science ®Google Scholar
• Wu, Y., Lu, Y., Kapse, K., Jacobs, M., Andescavage, N., Donofrio, M. T., Lopez, C., Quistorff, J. L., Vezina, G., Krishnan, A., du Plessis, A. J., & Limperopoulos, C. (2021). In utero MRI identifies impaired second trimester subplate growth in fetuses with congenital heart disease. Cerebral Cortex, 32(13), 2858–2867. https://doi.org/10.1093/cercor/bhab386
   Web of Science ®Google Scholar
• Yang, C. H., Perumpail, B. J., Yoo, E. R., Ahmed, A., & Kerner Jr, J. A. (2017). Nutritional needs and support for children with chronic liver disease. Nutrients, 9(10), 1–16. https://doi.org/10.3390/nu9101127
   Web of Science ®Google Scholar
• Yu, J., Murray, J., Ramamoorthy, C., Chen, S., Lee, S., Ryan, K., Maeda, K., Navaratnam, M., & Goobie, S. (2021). Neurosurgical intervention in children with ventricular assist devices: A single-center case series review. Paediatric Anaesthesia, 31(11), 1208–1215. https://doi.org/10.1111/pan.14287
   PubMed Web of Science ®Google Scholar
• Zadeh, S., Pao, M., & Wiener, L. (2015). Opening end-of-life discussions: How to introduce voicing my CHOiCESTM, an advance care planning guide for adolescents and young adults. Palliative & Supportive Care, 13(3), 591–599. https://doi.org/10.1017/S1478951514000054
   PubMed Web of Science ®Google Scholar
• Zhang, L. F., Ho, J. S., & Kennedy, S. E. (2014). A systematic review of the psychometric properties of transition readiness assessment tools in adolescents with chronic disease. BMC Pediatrics, 14(1), 1–10. https://doi.org/10.1186/1471-2431-14-4
   PubMedGoogle Scholar