A Nephrology Pediatric to Adult Transition Clinic: A Pilot Program

Abstract

Young adults with chronic kidney disease are living longer, with a 10-year survival rate > 80%, thus resulting in an increase in patients requiring a transition of care from pediatric to adult-based practices.1Ferris M.E. Gipson D.S. Kimmel P.L. Eggers P.W. 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: 1020-1026Crossref PubMed Scopus (97) Google Scholar This transition of care most often occurs between ages 18 and 24 years, a time at which young adults experience unique challenges and when there is a substantial risk for nonadherence and poor outcomes.2White H.W. Cooley W.C. Transitions Clinical Report Authorizing Group; American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians. Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2018; 142: e20182587Crossref PubMed Scopus (298) Google Scholar, 3Raina R. Wang J. Sethi S.K. Ferris M. Survey on health care transition services in pediatric nephrology.Clin Exp Nephrol. 2018; 22: 206-207Crossref PubMed Scopus (5) Google Scholar, 4Society for Adolescent Health and Medicine. Young adult health and well-being: A position statement of the Society for Adolescent Health and Medicine..J Adolesc Health. 2017; 60: 758-759Abstract Full Text Full Text PDF PubMed Scopus (57) Google Scholar Historically, transition recommendations were focused on pediatric practitioners, but the vital role of the adult clinicians has become more evident in recent years.5Tanner A. Philbin M.M. Ma A. et al.Adolescent to adult HIV health care transition from the perspective of adult providers in the United States.J Adolesc Health. 2017; 61: 434-439Abstract Full Text Full Text PDF PubMed Scopus (25) Google Scholar, 6Cooley W.C. Sagerman P.J. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2011; 128: 182-200Crossref PubMed Scopus (791) Google Scholar, 7Watson A.R. Harden P. Ferris M. Kerr P.G. Mahan J. Ramzy M.F. 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: 1753-1757Crossref PubMed Scopus (115) Google Scholar The consensus statement by the International Society of Nephrology and International Pediatric Nephrology Association supports care coordination between lead clinicians in pediatric and adult nephrology units to ensure a smoother transition.7Watson A.R. Harden P. Ferris M. Kerr P.G. Mahan J. Ramzy M.F. 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: 1753-1757Crossref PubMed Scopus (115) Google Scholar Despite this recommendation, adult care providers often feel ill equipped to facilitate a successful transition and most centers do not have protocols in place.2White H.W. Cooley W.C. Transitions Clinical Report Authorizing Group; American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians. Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2018; 142: e20182587Crossref PubMed Scopus (298) Google Scholar Northwestern Medicine Nephrology implemented a pilot transition-of-care program for young adults with kidney disease transitioning from Lurie Children’s Hospital to Northwestern Medicine and we report on the first 3.5 years. This program provided coordination of care between pediatric and adult nephrology teams through a formal transition process. This was done as part of a quality improvement project and thus was exempted from institutional review board approval. The adult nephrology transition team included a lead nephrologist, physician assistant, and social worker, all credentialed at Lurie Children’s Hospital specifically for this program, allowing for documentation in the pediatric chart and for billing. The pediatric nephrology team identified eligible patients and set transfer appointments. Kidney transplant recipients were not included as they were seen through a separate transition program. Before the transfer visit, the teams reviewed the patient history, including identification of potential psychosocial transition barriers. The transfer visit occurred at Lurie Children’s Hospital with subsequent visits at Northwestern Medicine. Patients’ medical independence and knowledge were assessed, helping to identify those patients at higher risk for nonadherence and requiring additional support. There was opportunity for parental involvement, as well as one-on-one time with the adult providers for young adults making independent health care decisions. A follow-up appointment with the nephrologist or physician assistant was scheduled before the transfer visit was completed. Monthly reviews were conducted to determine whether proper follow-up had occurred and if not, procedures of enhanced follow-up in the form of calls, e-mails, and/or texts were implemented. The pediatric team assisted in contacting any patient who could not be reached. The social worker aided with pertinent insurance and psychosocial issues. Additional specialties were incorporated in the comprehensive care of the patient as needed. Characteristics of the transition participants are summarized in Table 1. A total of 75 patients were seen in a 3.5-year period, with an initial age range of 18 to 21 years. We noted a wide range of kidney pathologies, as seen in Table 1, many not historically treated by adult nephrologists.Table 1Transition Participants CharacteristicsParticipants in Transition Program (n =75)Women37 (49%)Men38 (51%)Age range at enrollment, y18-21Diagnoses Glomerulonephritis20 Urologic disorders17 Hypertension/fibromuscular dysplasia10 Genetic tubular interstitial disorders7 Nonkidney organ transplant–related CKD6 Chemotherapy-related CKD4 Polycystic kidney disease4 Type 1 DM with microalbuminuria2 Tuberous sclerosis2 Hydronephrosis1 Alport syndrome1 ANCA vasculitis1Note: Values expressed as number or number (percent).Abbreviations: ANCA, antineutrophil cytoplasmic antibody; CKD, chronic kidney disease; DM, diabetes mellitus. Open table in a new tab Note: Values expressed as number or number (percent). Abbreviations: ANCA, antineutrophil cytoplasmic antibody; CKD, chronic kidney disease; DM, diabetes mellitus. We defined a successful transition as a patient having returned for follow-up at Northwestern Medicine at least once after the initial transfer visit at Lurie Children’s Hospital. Transition outcomes are summarized in Table 2, with 71% successful transition and 9% pending follow-up (has an upcoming visit). A total of 16% of patients had an unsuccessful transition, and 40% of patients required enhanced follow-up of at least 1 reminder to schedule a missed visit.Table 2Transition OutcomesOutcomeTransition Program Participants (n = 75)Successful transition53 (71%)Unsuccessful transition12 (16%) Lost to follow-up7 (9%) Insurance loss/change5 (7%)Pending follow-up7 (9%)No longer requiring follow-up3 (4%)Note: Values expressed as number (percent). Open table in a new tab Note: Values expressed as number (percent). Our nephrology transition clinic was effective, with 71% of patients successfully transitioned to adult care. This is significantly higher than reported in the literature. For example, Raina et al.3Raina R. Wang J. Sethi S.K. Ferris M. Survey on health care transition services in pediatric nephrology.Clin Exp Nephrol. 2018; 22: 206-207Crossref PubMed Scopus (5) Google Scholar surveyed 49 nephrology centers that reported only 27% successful transition. Although there is no formally recognized standard for what constitutes a “successful” transition, these numbers give a general impression of the effectiveness of our strategies. We postulate several factors contributing to our high successful transition rate. A key factor was having a dedicated multidisciplinary transition team, enabling us to provide the additional support services and access that these young adults require. As noted in the major guidelines, close communication between the adult and pediatric team is essential.2White H.W. Cooley W.C. Transitions Clinical Report Authorizing Group; American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians. Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2018; 142: e20182587Crossref PubMed Scopus (298) Google Scholar,6Cooley W.C. Sagerman P.J. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2011; 128: 182-200Crossref PubMed Scopus (791) Google Scholar, 7Watson A.R. Harden P. Ferris M. Kerr P.G. Mahan J. Ramzy M.F. 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: 1753-1757Crossref PubMed Scopus (115) Google Scholar, 8Mazur A. Dembinski L. Schrier L. Hadjipanayis A. Michaud P.A. European Academy of Paediatric consensus statement on successful transition from paediatric to adult care for adolescents with chronic conditions.Acta Paediatr. 2017; 106: 1354-1357Crossref PubMed Scopus (48) Google Scholar We found that conducting the transfer visit at the pediatric location aided in patient comfort with the process. One-on-one time with the providers during the transfer visit enabled patients to express any confidential transition concerns, including social situation and drug use. Many patients required enhanced follow-up/reminders for missed visits after transfer; we believe that without this protocol-based intervention, most of these patients would not have successfully transitioned. Lurie Children’s Hospital and Northwestern Medicine are adjacent to one another, minimizing location change as a substantial barrier. Finally, both institutions use the same electronic medical record, which greatly aided in information exchange. A limitation to our findings is the limited length of our pilot program; that is, 3.5 years. In addition, there is no universally agreed-on definition of successful transition. For future research, we will be looking at factors influencing drop out. Based on our pilot experience, transition of care from pediatric to adult nephrology providers can be successfully facilitated with a model such as ours, with collaboration between the teams educated on and engaged in the process. Research idea and study design: LN, CG, CL; data acquisition: LN; data analysis/interpretation: LN, CG; statistical analysis: LN, CG; supervision or mentorship: CG, CL. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved. None. The authors declare that they have no relevant financial interests. Received April 22, 2019. Evaluated by 2 external peer reviewers, with direct editorial input from an Associate Editor and the Editor-in-Chief. Accepted in revised form July 20, 2019.