Self-Management and Health Care Transition Among Adolescents and Young Adults With Chronic Kidney Disease: Medical and Psychosocial Considerations

      Health care transition (HCT) is a process that requires preparation as a continuum from pediatric- to adult-focused services. For adolescents and young adults with chronic or ESRD, this process can be prolonged due to their physical, psychological, family, or ecological factors. HCT preparation is a matter of patient safety and patient rights as the consequences of poor preparation at the time of transfer to adult-focused services are great, including rejection of organs, disease relapse, or even death. We present a case to illustrate important points of HCT preparation, with suggestions for intervention by the interdisciplinary team members who serve (and will serve) these survivors of pediatric-onset health conditions. To monitor the HCT process, yearly measurements of skill mastery need to take place guide interventions.

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        • Ferris M.E.
        • Gipson D.S.
        • Kimmel P.L.
        • et al.
        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: 1020-1026
        • Massengill S.F.
        • Ferris M.
        Chronic kidney disease in children and adolescents.
        Pediatr Rev. 2014; 35: 16-29
        • Ardissino G.
        • Dacco V.
        • Testa S.
        • et al.
        Epidemiology of chronic renal failure in children: data from the ItalKid project.
        Pediatrics. 2003; 111: e382-e387
        • Lane P.H.
        Pediatric aspects of diabetic kidney disease.
        Adv Chronic Kidney Dis. 2005; 12: 230-235
        • Koshy S.M.
        • Geary D.F.
        Anemia in children with chronic kidney disease.
        Pediatr Nephrol. 2008; 23: 209-219
        • Morris K.P.
        • Sharp J.
        • Watson S.
        • et al.
        Non-cardiac benefits of human recombinant erythropoietin in end stage renal failure and anaemia.
        Arch Dis Child. 1993; 69: 580-586
        • Filler G.
        • Mylrea K.
        • Feber J.
        • et al.
        How to define anemia in children with chronic kidney disease?.
        Pediatr Nephrol. 2007; 22: 702-707
        • Leaf D.E.
        • Goldfarb D.S.
        Interpretation and review of health-related quality of life data in CKD patients receiving treatment for anemia.
        Kidney Int. 2009; 75: 15-24
        • Furth S.L.
        • Stablein D.
        • Fine R.N.
        • et al.
        Adverse clinical outcomes associated with short stature at dialysis initiation: a report of the North American Pediatric Renal Transplant Cooperative Study.
        Pediatrics. 2002; 109: 909-913
        • Haffner D.
        • Zivicnjak M.
        Pubertal development in children with chronic kidney disease.
        Pediatr Nephrol. 2017; 32: 949-964
        • Nourbakhsh N.
        • Rhee C.M.
        • Kalantar-Zadeh K.
        Protein-energy wasting and uremic failure to thrive in children with chronic kidney disease: they are not small adults.
        Pediatr Nephrol. 2014; 29: 2249-2252
        • Ardissino G.
        • Testa S.
        • Dacco V.
        • et al.
        Puberty is associated with increased deterioration of renal function in patients with CKD: data from the ItalKid Project.
        Arch Dis Child. 2012; 97: 885-888
        • Procci W.R.
        • Goldstein D.A.
        • Adelstein J.
        • et al.
        Sexual dysfunction in the male patient with uremia: a reappraisal.
        Kidney Int. 1981; 19: 317-323
        • Toorians A.W.
        • Janssen E.
        • Laan E.
        • et al.
        Chronic renal failure and sexual functioning: clinical status versus objectively assessed sexual response.
        Nephrol Dial Transplant. 1997; 12: 2654-2663
        • Vecchio M.
        • et al.
        • Collaborative Depression and Sexual Dysfunction in Hemodialysis Working Group
        Prevalence and correlates of erectile dysfunction in men on chronic haemodialysis: a multinational cross-sectional study.
        Nephrol Dial Transplant. 2012; 27: 2479-2488
        • Finkelstein F.O.
        • Shirani S.
        • Wuerth D.
        • et al.
        Therapy Insight: sexual dysfunction in patients with chronic kidney disease.
        Nat Clin Pract Nephrol. 2007; 3: 200-207
        • Kaplan M.J.
        Approaching sexual issues in primary care.
        Prim Care. 2002; 29: 113-124
        • Gipson D.S.
        • Hooper S.R.
        • Duquette P.J.
        • et al.
        Memory and executive functions in pediatric chronic kidney disease.
        Child Neuropsychol. 2006; 12: 391-405
        • Slickers J.
        • Duquette P.
        • Hooper S.
        • et al.
        Clinical predictors of neurocognitive deficits in children with chronic kidney disease.
        Pediatr Nephrol. 2007; 22: 565-572
        • Varga M.
        • Sumi R.
        • Toroczkai Z.
        • et al.
        Order-to-chaos transition in the hardness of random Boolean satisfiability problems.
        Phys Rev E. 2016; 93: 052211
        • Sanders L.M.
        • Federico S.
        • Klass P.
        • et al.
        Literacy and child health: a systematic review.
        Arch Pediatr Adolesc Med. 2009; 163: 131-140
        • DeWalt D.A.
        • Hink A.
        Health literacy and child health outcomes: a systematic review of the literature.
        Pediatrics. 2009; 124: S265-S274
        • Dobbels F.
        • Van Damme-Lombaert R.
        • Vanhaecke J.
        • et al.
        Growing pains: non-adherence with the immunosuppressive regimen in adolescent transplant recipients.
        Pediatr Transpl. 2005; 9: 381-390
        • Samuel S.M.
        • Nettel-Aguirre A.
        • Soo A.
        • et al.
        Avoidable hospitalizations in youth with kidney failure after transfer to or with only adult care.
        Pediatrics. 2014; 133: e993-e1000
        • Watson A.R.
        Non-compliance and transfer from paediatric to adult transplant unit.
        Pediatr Nephrol. 2000; 14: 469-472
        • Bhanushali G.K.
        • Jain G.
        • Fatima H.
        • et al.
        AKI associated with synthetic cannabinoids: a case series.
        Clin J Am Soc Nephrol. 2013; 8: 523-526
        • Greenan G.
        • Ahmad S.B.
        • Anders M.G.
        • et al.
        Recreational marijuana use is not associated with worse outcomes after renal transplantation.
        Clin Transplant. 2016; 30: 1340-1346
        • Kogon A.J.
        • Vander Stoep A.
        • Weiss N.S.
        • et al.
        Depression and its associated factors in pediatric chronic kidney disease.
        Pediatr Nephrol. 2013; 28: 1855-1861
        • Moreira J.M.
        • Bouissou Morais Soares C.M.
        • Teixeira A.L.
        • et al.
        Anxiety, depression, resilience and quality of life in children and adolescents with pre-dialysis chronic kidney disease.
        Pediatr Nephrol. 2015; 30: 2153-2162
        • Medway M.
        • Tong A.
        • Craig J.C.
        • et al.
        Parental perspectives on the financial impact of caring for a child with CKD.
        Am J Kidney Dis. 2015; 65: 384-393
        • Rak E.C.
        • Hooper S.R.
        • Belsante M.J.
        • et al.
        Caregiver word reading literacy and health outcomes among children treated in a pediatric nephrology practice.
        Clin Kidney J. 2016; 9: 510-515
        • Mahan J.D.
        • Betz C.L.
        • Okumura M.J.
        • et al.
        Self-management and transition to adult health care in adolescents and young adults: a team process.
        Pediatr Rev. 2017; 38: 305-319
        • Watson A.R.
        • Harden P.
        • Ferris M.
        • et al.
        Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA).
        Pediatr Nephrol. 2011; 26: 1753-1757
        • Foster B.J.
        Heightened graft failure risk during emerging adulthood and transition to adult care.
        Pediatr Nephrol. 2015; 30: 567-576
        • Aloisio Alves C.
        Chronic health conditions in childhood and adolescence and the formation of care and support networks.
        in: Ozdemir O. Pediatric Nursing, Psychiatric and Surgical Issues. 2015
        • Lavigne J.V.
        • Faier-Routman J.
        Psychological adjustment to pediatric physical disorders: a meta-analytic review.
        J Pediatr Psychol. 1992; 17: 133-157
        • Pinquart M.
        • Shen Y.
        Depressive symptoms in children and adolescents with chronic physical illness: an updated meta-analysis.
        J Pediatr Psychol. 2011; 36: 375-384