[2015] Benefits of a Transfer Clinic in Adolescent and Young Adult Kidney Transplant Patients

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  ORIGINAL RESEARCH ARTICLE Open Access Benefits of a transfer clinic in adolescentand young adult kidney transplant patients Rory F. McQuillan 1,6 , Alene Toulany 2,5,7 , Miriam Kaufman 2,4,5,7 and Jeffrey R. Schiff  1,3,8* Abstract Background:  Adolescent and young adult kidney transplant recipients have worse graft outcomes than older andyounger age groups. Difficulties in the process of transition, defined as the purposeful, planned movement of adolescents with chronic health conditions from child to adult-centered health care systems, may contribute to this.Improving the process of transition may improve adherence post-transfer to adult care services. Objective:  The purpose of this study is to investigate whether a kidney transplant transfer clinic for adolescent andyoung adult kidney transplant recipients transitioning from pediatric to adult care improves adherence post-transfer. Methods:  We developed a joint kidney transplant transfer clinic between a pediatric kidney transplant program, adultkidney transplant program, and adolescent medicine at two academic health centers. The transfer clinic facilitatedcommunication between the adult and pediatric transplant teams, a face-to-face meeting of the patient with the adultteam, and a meeting with the adolescent medicine physician. We compared the outcomes of 16 kidney transplantrecipients transferred before the clinic was established with 16 patients who attended the clinic. The primary outcomewas a composite measure of non-adherence. Non-adherence was defined as either self-reported medication non-adherence or displaying two of the following three characteristics: non-attendance at clinic, non-attendance for bloodwork appointments, or undetectable calcineurin inhibitor levels within 1 year post-transfer. Results:  The two groups were similar at baseline, with non-adherence identified in 43.75 % of patients. Non-adherentbehavior in the year post-transfer, which included missing clinic visits, missing regular blood tests, and undetectablecalcineurin inhibitor levels, was significantly lower in the cohort which attended the transfer clinic (18.8 versus 62.5 %,  p =0.03). The median change in estimated glomerular filtration rate (eGFR) in the year following transfer was smaller inthe group that attended the transition clinic ( − 0.9±13.2 ml/min/1.73 m 2 ) compared to those who did not ( − 12.29±14.9 ml/min/1.73 m 2 ),  p = 0.045. Conclusions:  Attendance at a single kidney transplant transfer clinic was associated with improved adherence andrenal function in the year following transfer to adult care. If these changes are sustained, they may improve long-termgraft outcomes for adolescent kidney transplant recipients. Keywords:  Transplant, Transition, Transfer, Health care, Adherence * Correspondence: jeffrey.schiff@uhn.ca 1 Division of Nephrology and Department of Medicine, University HealthNetwork, Toronto, Ontario, Canada 3 Multi-Organ Transplant Program, University Health Network, Toronto,Ontario, CanadaFull list of author information is available at the end of the article © 2015 McQuillan et al.  Open Access  This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the srcinal author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated. McQuillan  et al. Canadian Journal of Kidney Health and Disease  (2015) 2:45 DOI 10.1186/s40697-015-0081-6  Résumé Contexte:  L ’ évolution favorable du greffon est plus souvent compromise chez les adolescents et les jeunes adultestransplantés du rein que chez les enfants et les adultes ayant subi la même intervention. Ces jeunes patients quisont en général atteints de maladies chroniques, rencontrent des difficultés au cours de la période de transitionentre le moment de leur transfert des unités de soins pédiatriques vers les unités de soins pour adultes, et celles-cipourraient contribuer à ce pronostic défavorable. Des améliorations apportées au processus de transition pourraientfavoriser l ’ adhésion de ces jeunes patients à leur protocole de traitement à la suite leur transfert dans les servicesde soins pour adultes. Objectif:  Le but de cette étude est de vérifier si la fréquentation d ’ une clinique de transfert pouvait améliorerl ’ adhésion des adolescents et des jeunes adultes greffés du rein à leur traitement, après leur transfert d ’ unétablissement pédiatrique vers des services de soins pour adultes. Méthodes:  Nous avons développé, au sein de deux centres universitaires de santé, deux cliniques conjointes detransfert pour les transplantés du rein. Ces cliniques étaient formées d ’ un programme de transplantation rénalepédiatrique, d ’ un programme de greffe rénale pour adultes et d ’ une clinique de médecine adolescente. La mise enplace d ’ une clinique de transfert a facilité la communication entre les équipes de transplantation pour adultes etpédiatriques, a permis aux patients adolescents de rencontrer les équipes de transplantation pour adultes et derencontrer des spécialistes de la médecine adolescente. Nous avons comparé les résultats de 16 jeunes greffés durein qui avaient été transférés dans les centres de soins pour adultes avant la mise en place de la clinique detransfert avec les résultats de 16 patients qui ont fréquenté la clinique de transfert avant leur transition vers lesunités de soins pour adultes. Le principal résultat a été une mesure composite d ’ adhésion au traitement. La non-adhésion a été définie soit par l ’ aveu de la part du patient de sa non-observance du traitement médicamenteux,soit par la manifestation de deux des trois comportements suivants dans le suivi du patient : la non-fréquentationde la clinique de transfert, le défaut de se présenter aux rendez-vous pour les analyses sanguines ou un niveauindécelable des inhibiteurs de calcineurine dans l ’ année suivant le transfert vers les services de soins pour adultes. Résultats:  Les patients des deux groupes présentaient des caractéristiques similaires au début de l ’ étude, et43,75 % d ’ entre eux avaient admis ne pas adhérer entièrement au traitement. Le nombre de comportementsidentifiés comme signes de non-adhésion au traitement tels que manquer des rendez-vous à la clinique detransfert, ne pas se présenter pour les analyses sanguines ou un niveau d ’ inhibiteurs de la calcineurine indécelabledans l ’ année suivant le transfert, étaient nettement inférieurs dans la cohorte de patients qui fréquentait la cliniquede transfert que dans celle des patients qui avaient été transférés directement dans les services de soins pouradultes (18,8 % versus 62,5 %,  p = 0,03). Qui plus est, les patients ayant fréquenté la clinique de transfertprésentaient une variation médiane plus faible du débit de filtration glomérulaire ( − 0,9 ± 13,2 ml/min/1,73 m 2 )lorsque comparée à celle du groupe ayant été transféré directement ( − 12,2 ± 14,9 ml/min/1,73 m 2 ),  p = 0,045. Conclusions:  Le fait de fréquenter une clinique de transfert pour les greffés du rein, dans l ’ année suivant leurtransfert dans un centre de soins pour adultes, donne lieu à la fidélisation des jeunes transplantés du rein à l ’ égardde leur traitement et ceci favorise le rétablissement de leur fonction rénale. Le maintien de ces changements decomportement pourrait améliorer le pronostic à long terme quant à l ’ évolution du greffon chez les adolescents etles jeunes adultes greffés du rein. McQuillan  et al. Canadian Journal of Kidney Health and Disease  (2015) 2:45 Page 2 of 8  Background Adherence may be defined as the extent to which pa-tients are able to follow recommendations for prescribedtreatment [1, 2]. Although there is no universal method to assess adherence, information from multiple sourcesincluding the adolescent, family, health care providers,and direct measurement of medication or metaboliteblood levels is most reliable [3 – 5]. Non-adherence is acomplex and multi-factorial phenomenon that may occur at any stage during treatment. Low adherence may increase morbidity and medical complications, contrib-uting to poorer quality of life and an overuse of thehealth care system [3, 6]. Examples of non-adherence may include failing to collect a prescription from a phar-macy, not taking a prescribed medication as directed,taking too much medication or skipping doses, or takingthe medication at the wrong time. Adolescent and youngadult patients may be non-adherent due to issues relatedto the complexity of a medication regimen, poor com-munication with a health care provider, or a number of patient-related factors such as their developmental stage,emotional issues, and family dysfunction [3]. Non-adherence with treatment after kidney transplantation isassociated with poor clinical outcomes and increasedhealth care costs [7 – 10]. Non-adherence may refer tomultiple elements, including missing medications, takingmedications incorrectly, missing clinic visits, or missingscheduled blood tests.One quarter of all kidney transplant recipients are esti-mated to be non-adherent [11]. Adolescents are at par-ticular risk of failing to fully adhere to their medicationregimen [12, 13]. This may explain why their graft sur-  vival is worse than in any age group up to age 70 [14].There are many unique developmental tasks duringadolescence that may contribute to the problem of non-adherence in this group of patients. Immunosuppressivemedications may induce changes in one ’ s body at a timewhen the adolescent is adjusting to one ’ s physique anddealing with issues of self-esteem [9]. Normal adolescenttendencies of testing independence and questioning au-thority may predispose them to reject medical adviceand treatment. Other factors such as impulsivity and risktaking, sense of indestructibility, denial of severity of ill-ness, and wanting to  “ be normal ”  may also contribute.In addition, developing a complex, chronic illness inchildhood or adolescence negatively impacts adolescents ’ development psychologically, physiologically, and so-cially, thereby interrupting the normative adolescent de- velopmental processes. Therefore, the period of transition from pediatric to adult care may be of particu-larly high risk. For example, in a cohort of 20 patientstransferred from pediatric care without a transition planin place, Watson demonstrated a 35 % incidence of graftloss within the first 3 years [15].Transition is defined as the purposeful, planned move-ment of adolescents with chronic physical and medicalconditions from child-centered to adult-oriented healthcare systems [16, 17]. Transitioning adolescents with complex, chronic health care needs is challenging for pa-tients, families, and health care workers [18 – 24]. Thetransition process is often inadequately planned, inter-rupted, and poorly coordinated. These challenges con-tribute to an increased risk of patient disengagement,health care dropout, and poor treatment adherence. Thiscan lead to more emergency room visits, hospitaliza-tions, and poor health outcomes [15, 25 – 27].Several international and national policy and positionstatements call for transition planning and evaluation of transition outcomes [17, 24]. It has been suggested that transition programs for adolescents with chronic illnesswould provide key opportunities to modify non-adherent behavior and self-efficacy and improve overallhealth outcomes [24, 28 – 30]. There are virtually nostudies linking improved outcomes with a specific transi-tion intervention. In recognition of these issues, we de- veloped a joint pediatric-adult kidney transplant transferclinic in order to improve the transition of patients be-tween pediatric and adult kidney transplant programs. Methods Setting The renal transplant transfer clinic was implemented asa joint initiative between the Transplant and Regenera-tive Medicine Centre (TRMC) at the Hospital for SickChildren (SickKids) and the Multi-Organ Transplant(MOT) Program at University Health Network (UHN).SickKids is the largest pediatric transplant center inCanada, performing 20 – 25 kidney transplants per year.The MOT Program at UHN provides a broad spectrumof services currently encompassing heart, lung, liver, kid-ney, pancreas, and small bowel transplantation. Approxi-mately 500 transplants are performed annually,including 150 – 180 kidney transplants. Follow-up care isprovided to almost 5000 transplant recipients. In On-tario, government regulations mandate the transfer of care from pediatric to adult health care settings at theage of 18, regardless of time post-transplant.Usual transition care in the pediatric kidney transplantclinic begins several years prior to transfer. Elements in-clude most adolescent patients seeing a health care pro- vider for part of the appointment without their parents;encouragement to learn the names and doses of theirmedications; coaching to be able to communicate infor-mation about their diagnosis and transplant history; andgeneral adolescent health care that includes reproductiveand contraceptive counseling, career guidance, and drugand alcohol counseling. Adolescent medicine interven-tions include managing comorbid mental health issues McQuillan  et al. Canadian Journal of Kidney Health and Disease  (2015) 2:45 Page 3 of 8  appropriately, customizing the treatment regimen whenpossible, providing information, ensuring family andpeer support, and empowering the adolescent to over-come adherence issues though motivational interviewingand other techniques.Prior to the establishment of the transfer clinic, pa-tients were distributed between all adult transplant ne-phrologists and coordinators at UHN. Adult providersdid not meet the patients prior to transfer, and theschedule for clinic visits and labs was the same as anadult patient at a comparable time post-transplant; forexample, a patient 5 years post-transplant would havehad routine lab tests every 3 months, with clinic visitsonly once or twice per year.The kidney transplant transfer clinic was set up in2009 by an inter-disciplinary team of pediatric and adultcare providers. The goal of the transfer clinic is to en-hance patient experience at the time of transitionthrough improved care coordination and integration.The clinic provides a structured meeting place betweenthe patient and the new adult care team in the pediatrichospital. It also allows the pediatric and adult care teamsa chance to communicate face-to-face about each pa-tient. Patients ’  graduations from the pediatric clinic werealso celebrated.The transfer clinic is held twice a year in the pediatrickidney transplant clinic area. Kidney transplant recipi-ents who will be turning 18 in the next 6 months attendthe clinic. A typical clinic includes between six and ninepatients, often accompanied by one or both parents.During each clinic, there is a formal discussion of eachpatient by the pediatric and adult kidney transplantteams. This includes a review of the patient ’ s history prior to transplant, post-transplant course, immunologicstatus, and other medical issues. Any follow-up that thepatient will require with other specialists is noted, as areany issues regarding the patient ’ s social situation. Fol-lowing this case review, the adult team is then intro-duced to and meets with the patient and any family members present, discusses the date of transfer and theprocess of the first clinic visit at UHN, and confirmscontact information. They do not participate in the pa-tient ’ s clinical care at that visit.Patients and parents separately participate in smallgroup discussions facilitated by members of the SickKidsGood 2 Go Transition Program. Topics for discussioninclude differences in the pediatric and adult health sys-tems; education and career plans; financial issues suchas insurance, student loans and grants, and the import-ance of filing income tax forms; reproductive issues; andself-management and adherence. Patients also completea MyHealth Passport and receive a  “ Getting Ready forAdult Care ”  booklet and a graduation certificate.MyHealth Passport (www.sickkids.ca/myhealthpassport)is a free online program that helps young persons createa wallet-sized card with important health information(that they can also email to themselves or others).MyHealth Passport was srcinally designed to improveadolescent patients ’  knowledge of their health history, togive them a sense of ownership of this information, andto ensure that important information is communicatedin a new or emergency situation. Three copies of theMyHealth Passport are printed for each patient; two arecut out and laminated, and they are encouraged to givethe other to their student health center if they are goingon to post-secondary education.All transferred patients are now directed to a singleadult transplant nephrologist and coordinator, who at-tend the transfer clinic. Regardless of time post-transplant, transferred patients are initially seen at leastevery 3 months after transfer and are asked to have rou-tine labs drawn monthly. Depending on the time post-transplant and the patient ’ s clinical status, this may bemore frequent than their follow-up at SickKids prior totransfer. Patients receive routine reminders of upcomingclinic visits and missed appointments are rebooked(similar to other patients), but they are not given specificreminders about blood tests. This practice was in placeboth before and after the initiation of the transfer clinic. Study design This was a retrospective cohort study, approved by the research ethics board of UHN and SickKids, toexamine the effect of the transfer clinic on patientadherence. The clinical and research activities beingreported are consistent with the Principles of theDeclaration of Istanbul as outlined in the Declarationof Istanbul on Organ Trafficking and TransplantTourism.Patients were divided by era; those who transferredprior to 2009 did so before the transfer clinic existed;those who transferred after 2009 attended the transferclinic. Transition preparation was otherwise the same.The study population therefore consisted of 32 consecu-tive patients who had transferred to adult care in theGreater Toronto Area at 18 years of age between July 2007 and June 2011. The study hypothesis was that ad-herence of patients who had attended the clinic wouldbe better than those who did not.Baseline information recorded at the time of transferincluded age, gender, age at end-stage renal disease(ESRD) diagnosis, age at transplant, histocompatibility data, type of transplant (either deceased or living donor),number of transplants, documented self-reported non-adherence in pediatric care (defined as missed medica-tion doses), rejection episodes, and serum creatinine.Non-adherent behavior was a composite measure de-fined as either self-reported medication non-adherence McQuillan  et al. Canadian Journal of Kidney Health and Disease  (2015) 2:45 Page 4 of 8
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