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661 30 Karu N, McKercher C, Nichols DS, Davies N, Shellie RA, Hilder EF, et al Tryptophan metabolism, its rela tion to inflammation and stress markers and associa tion with psychological and cognitive[.]

34  Neurocognitive Functioning in Pediatric Dialysis 30 Karu N, McKercher C, Nichols DS, Davies N, Shellie RA, Hilder EF, et al Tryptophan metabolism, its relation to inflammation and stress markers and association with psychological and cognitive functioning: Tasmanian Chronic Kidney Disease pilot study BMC Nephrol 2016;17(1):171 31 Kurella Tamura M, Chertow GM, Depner TA, Nissenson AR, Schiller B, Mehta RL, et  al Metabolic profiling of impaired cognitive function in patients receiving dialysis J Am Soc Nephrol 2016;27(12):3780–7 32 Youssef DM, Mohamed AH, Kamel Attia WM, Mohammad FF, El Fatah NRA, Elshal AS. Cerebral metabolic alterations and cognitive dysfunction in children with chronic kidney disease using Magnetic Resonance Spectroscopy and Wechsler intelligence scale Nephrology (Carlton) 2017;23(8):771–7 33 Chhabra YK, Sood S, Rathi O, Mahajan S. Effect of renal transplantation on cognitive function in hemodialysis patients: a longitudinal study Int Urol Nephrol 2017;49(11):2071–8 34 Jassal SV, Devins GM, Chan CT, Bozanovic R, Rourke S. Improvements in cognition in patients converting from thrice weekly hemodialysis to nocturnal hemodialysis: a longitudinal pilot study Kidney Int 2006;70(5):956–62 35 Murray AM. The brain and the kidney connection: a model of accelerated vascular cognitive impairment Neurology 2009;73(12):916–7 36 United States Renal Data System 2006 Annual Report Morbidity & mortality Neuroepidemiology: incident & prevalent stroke [Internet] https://www usrds.org/2006/pdf/06_morb_morte_06.pdf 37 Kupferman JC, Matheson MB, Lande MB, Flynn JT, Furth S, Warady BA, Hooper SR. Increased history of ischemic stroke and decreased neurocognitive performance in children with chronic kidney disease Pediatr Nephrol 2020;35(7):1315−1321 38 Lee M, Saver JL, Chang K-H, Liao H-W, Chang S-C, Ovbiagele B. Low glomerular filtration rate and risk of stroke: meta-analysis BMJ 2010;341(sep30 1):c4249 39 Liu B, Lau KK, Li L, Lovelock C, Liu M, Kuker W, et  al Age-specific associations of renal impairment with magnetic resonance imaging markers of cerebral small vessel disease in transient ischemic attack and stroke Stroke 2018;49(4):899–904 40 Martinez-Vea A, Salvadó E, Bardají A, Gutierrez C, Ramos A, García C, et al Silent cerebral white matter lesions and their relationship with vascular risk factors in middle-aged predialysis patients with CKD. Am J Kidney Dis 2006;47(2):241–50 41 Kobayashi M, Hirawa N, Yatsu K, Kobayashi Y, Yamamoto Y, Saka S, et  al Relationship between silent brain infarction and chronic kidney disease Nephrol Dial Transplant 2009;24(1):201–7 42 Valanne L, Qvist E, Jalanko H, Holmberg C, Pihko H.  Neuroradiologic findings in children with renal transplantation under years of age Pediatr Transplant 2004;8(1):44–51 661 43 Hartung EA, Erus G, Jawad AF, Laney N, Doshi JJ, Hooper SR, et al Brain magnetic resonance imaging findings in children and young adults with CKD. Am J Kidney Dis 2018;72(3):349–59 44 Liu H-S, Hartung EA, Jawad AF, Ware JB, Laney N, Port AM, et al Regional cerebral blood flow in children and young adults with chronic kidney disease Radiology 2018;288(3):849–58 45 Lande MB, Kupferman JC, Adams HR. Neurocognitive alterations in hypertensive children and adolescents J Clin Hypertens (Greenwich) 2012;14(6):353–9 46 Lande MB, Gerson AC, Hooper SR, Cox C, Matheson M, Mendley SR, et al Casual blood pressure and neurocognitive function in children with chronic kidney disease: a report of the children with chronic kidney disease cohort study Clin J Am Soc Nephrol 2011;6:1831–7 47 Ruebner RL, Laney N, Kim JY, Hartung EA, Hooper SR, Radcliffe J, et  al Neurocognitive dysfunction in children, adolescents, and young adults with CKD. Am J Kidney Dis 2016;67:567–75 48 Cianciolo G, De Pascalis A, Di Lullo L, Ronco C, Zannini C, La Manna G. Folic acid and homocysteine in chronic kidney disease and cardiovascular disease progression: which comes first? 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­rationale, programmatic approaches, and potential applicability Pediatr Nephrol 2017;32:2027–35 109 Ferris ME, Gipson DS, Kimmel PL, Eggers PW.  Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America Pediatr Nephrol 2006;21:1020–6 110 McDonald SP, Craig JC.  Australian and New Zealand Paediatric Nephrology Association long-­ term survival of children with end-stage renal disease N Engl J Med 2004;350:2654–62 111 Grootenhuis MA, Stam H, Last BF, Groothoff JW. The impact of delayed development on the quality of life of adults with end-stage renal disease since childhood Pediatr Nephrol 2006;21:538–44 112 Bell LE, Ferris ME, Fenton N, Hooper SR. Health care transition for adolescents with CKD-the journey from pediatric to adult care Adv Chronic Kidney Dis 2011;18:384–90 113 Icard PF, Hower SJ, Kuchenreuther AR, Hooper SR, Gipson DS. The transition from childhood to adult- 664 hood with ESRD: educational and social challenges Clin Nephrol 2008;69:1–7 114 Foster BJ, Pai ALH, Zelikovsky N, Amaral S, Bell L, Dharnidharka VR, Herbert D, Holly C, Knauper B, Matsell D, Phan V, Rogers R, Smith JM, Zhao H, S R Hooper and E A Hartung Furth SL. A randomized trial of a multicomponent intervention to promote medication adherence: the Teen Adherence in Kidney Transplant Effectiveness of Intervention Trial (TAKE-IT) Am J Kidney Dis 2018;72:30–41 Psychosocial Adjustment and Adherence to Prescribed Medical Care of Children and Adolescents on Dialysis 35 Kristin Loiselle Rich, Rebecca J. Johnson, and Melissa K. Cousino Abbreviations Psychosocial Adjustment BFST CBCL CBT CKD CMS Children receiving dialysis and their families are faced with complex treatment regimens and uncertainty regarding the future of their health Additional factors unique to dialysis include treatment demands causing a disruption to typical routines, unknown dialysis treatment duration before receiving a kidney transplant (if eligible), and knowledge that they will likely have to return to dialysis at some point in the future Thus, it is not surprising that children and their families may have challenges related to emotional and behavioral adjustment Since children and adolescents exist within a family system, it is important to consider the impact that dialysis has on parents and caregivers, as their function can, in turn, influence the child Given that emotional health can influence disease outcomes, it is important to understand how dialysis care impacts the child and family as a whole Table  35.1 provides a summary of relevant factors Behavioral Family Systems Therapy Child Behavior Checklist Cognitive-behavioral therapy Chronic kidney disease Centers for Medicare and Medicaid Services DBT Dialectical Behavior Therapy ESKD End-stage kidney disease HD Hemodialysis PD Peritoneal dialysis PTSD Post-traumatic stress disorder K L Rich (*) Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA e-mail: Kristin.loiselle@cchmc.org R J Johnson Division of Developmental and Behavioral Health, University of Missouri-Kansas City School of Medicine, Children’s Mercy Kansas City, Kansas City, MO, USA e-mail: rejohnson@cmh.edu M K Cousino Department of Pediatrics, C.S. Mott Children’s Hospital, Ann Arbor, MI, USA e-mail: melcousi@med.umich.edu Child Adjustment There are some children who experience a relatively smooth adjustment to dialysis However, there are others who find the process stressful, resulting in emotional and behavioral difficulties Contributing factors to adjustment may include © Springer Nature Switzerland AG 2021 B A Warady et al (eds.), Pediatric Dialysis, https://doi.org/10.1007/978-3-030-66861-7_35 665 K L Rich et al 666 Table 35.1  Psychological issues experienced by children on dialysis and their families Child Family Symptoms of depression and anxiety Behavior problems, including hyperactivity Lower self-esteem related to changes in physical appearance School problems Peer and social problems Symptoms of depression and anxiety Increased stress Poor sleep Lack of social support Disruption to family life/activities Siblings feel left out the child’s age, history of traumatic medical experiences, urgency (expected progression from chronic kidney disease care versus emergency initiation of dialysis), and support network Emotional Adjustment  Internalizing symptoms are prevalent among children and adolescents undergoing dialysis Pediatric dialysis patients have been found to have higher rates of internalizing symptoms [5], specifically depressive symptoms [50], than either kidney transplant patients or healthy comparison groups In a sample of 67 patients undergoing either hemodialysis (HD) or peritoneal dialysis (PD), over half reported the presence of depressive symptoms, with 10% reporting high symptoms and 43% reporting low symptoms [38] However, a different study found that children on dialysis were less likely to be depressed compared with children at earlier stages of CKD [52] Bakr et al [8] studied 19 children on hemodialysis and found that the prevalence of psychiatric disorders in their sample was 52.6%, with adjustment disorders and depression most common Consistent with other studies, the patients on dialysis had higher rates of psychiatric disorders than a comparison group of pre-dialysis patients In a group of children diagnosed with end-stage kidney disease (ESKD) early in life, either on dialysis or with a kidney transplant at the time of assessment, 50% scored in the borderline to impaired range on a measure of overall psychological adjustment [54] Behavioral Adjustment  Studies that have assessed externalizing symptoms in this popula- tion are not as prevalent as studies of internalizing symptoms or disorders, but a small number suggest a higher rate of externalizing symptoms (i.e., disruptive or noncompliant behavior, hyperactivity) in children on dialysis versus a normative population One study found that 26.3% of a dialysis sample scored above the clinical cutoff in the clinical range for externalizing symptoms on the Child Behavior Checklist (CBCL; [5]) Marciano et  al [55] examined a group of 136 children with chronic kidney disease (CKD) who were pre-dialysis, on dialysis, or received a transplant On an assessment of overall emotional-­ behavioral functioning, children with CKD had significantly more parent-reported symptoms across domains (emotional problems, behavioral problems, hyperactivity, and peer problems) compared to a healthy control group The prevalence of emotional and behavioral disorders was 57.5%; however, in those who reported poor quality of life, the rate increased to 77.8% Social Adjustment  The demands of dialysis place a significant social burden on children and families School attendance declines, opportunities for social activities and peer relationships decrease, participation in extracurricular activities is limited, and increased dependence on parents and other adults (i.e., healthcare staff) may adversely influence development of self-esteem and self-efficacy Managing ESKD is an endeavor filled with uncertainty and lifestyle restrictions related to the demands of treatment Children on dialysis are challenged to adjust to a range of significant stressors, in a situation that simultaneously limits social and emotional resources that enable active coping In other words, when it comes to adjustment and coping, they are expected to a lot, often with very little For example, in one study of emotional functioning, the patients who reported the most depressive symptoms also reported very little to no peer social support [38] One domain of social adjustment that is particularly challenging for patients on dialysis is adjusting to changes in physical appearance Comorbidities of ESKD and treatment side ... Press GA, Schneider JA, Trauner DA. Cortical atrophy and cognitive performance in infantile nephropathic cystinosis Pediatr Neurol 1990;6:379–81 92 Hurkx W, Hulstijn D, Pasman J, Rotteveel J, Visco... challenges related to emotional and behavioral adjustment Since children and adolescents exist within a family system, it is important to consider the impact that dialysis has on parents and caregivers,... psychological adjustment [54] Behavioral Adjustment  Studies that have assessed externalizing symptoms in this popula- tion are not as prevalent as studies of internalizing symptoms or disorders, but a

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