Setting
The renal transplant transfer clinic was implemented as a joint initiative between the Transplant and Regenerative Medicine Centre (TRMC) at the Hospital for Sick Children (SickKids) and the Multi-Organ Transplant (MOT) Program at University Health Network (UHN). SickKids is the largest pediatric transplant center in Canada, performing 20–25 kidney transplants per year. The MOT Program at UHN provides a broad spectrum of services currently encompassing heart, lung, liver, kidney, pancreas, and small bowel transplantation. Approximately 500 transplants are performed annually, including 150–180 kidney transplants. Follow-up care is provided to almost 5000 transplant recipients. In Ontario, government regulations mandate the transfer of care from pediatric to adult health care settings at the age of 18, regardless of time post-transplant.
Usual transition care in the pediatric kidney transplant clinic begins several years prior to transfer. Elements include most adolescent patients seeing a health care provider for part of the appointment without their parents; encouragement to learn the names and doses of their medications; coaching to be able to communicate information about their diagnosis and transplant history; and general adolescent health care that includes reproductive and contraceptive counseling, career guidance, and drug and alcohol counseling. Adolescent medicine interventions include managing comorbid mental health issues appropriately, customizing the treatment regimen when possible, providing information, ensuring family and peer support, and empowering the adolescent to overcome adherence issues though motivational interviewing and other techniques.
Prior to the establishment of the transfer clinic, patients were distributed between all adult transplant nephrologists and coordinators at UHN. Adult providers did not meet the patients prior to transfer, and the schedule for clinic visits and labs was the same as an adult patient at a comparable time post-transplant; for example, a patient 5 years post-transplant would have had routine lab tests every 3 months, with clinic visits only once or twice per year.
The kidney transplant transfer clinic was set up in 2009 by an inter-disciplinary team of pediatric and adult care providers. The goal of the transfer clinic is to enhance patient experience at the time of transition through improved care coordination and integration. The clinic provides a structured meeting place between the patient and the new adult care team in the pediatric hospital. It also allows the pediatric and adult care teams a chance to communicate face-to-face about each patient. Patients’ graduations from the pediatric clinic were also celebrated.
The transfer clinic is held twice a year in the pediatric kidney transplant clinic area. Kidney transplant recipients who will be turning 18 in the next 6 months attend the clinic. A typical clinic includes between six and nine patients, often accompanied by one or both parents. During each clinic, there is a formal discussion of each patient by the pediatric and adult kidney transplant teams. This includes a review of the patient’s history prior to transplant, post-transplant course, immunologic status, and other medical issues. Any follow-up that the patient will require with other specialists is noted, as are any issues regarding the patient’s social situation. Following this case review, the adult team is then introduced to and meets with the patient and any family members present, discusses the date of transfer and the process of the first clinic visit at UHN, and confirms contact information. They do not participate in the patient’s clinical care at that visit.
Patients and parents separately participate in small group discussions facilitated by members of the SickKids Good 2 Go Transition Program. Topics for discussion include differences in the pediatric and adult health systems; education and career plans; financial issues such as insurance, student loans and grants, and the importance of filing income tax forms; reproductive issues; and self-management and adherence. Patients also complete a MyHealth Passport and receive a “Getting Ready for Adult Care” booklet and a graduation certificate. MyHealth Passport (www.sickkids.ca/myhealthpassport) is a free online program that helps young persons create a wallet-sized card with important health information (that they can also email to themselves or others). MyHealth Passport was originally designed to improve adolescent patients’ knowledge of their health history, to give them a sense of ownership of this information, and to ensure that important information is communicated in a new or emergency situation. Three copies of the MyHealth Passport are printed for each patient; two are cut out and laminated, and they are encouraged to give the other to their student health center if they are going on to post-secondary education.
All transferred patients are now directed to a single adult transplant nephrologist and coordinator, who attend the transfer clinic. Regardless of time post-transplant, transferred patients are initially seen at least every 3 months after transfer and are asked to have routine labs drawn monthly. Depending on the time post-transplant and the patient’s clinical status, this may be more frequent than their follow-up at SickKids prior to transfer. Patients receive routine reminders of upcoming clinic visits and missed appointments are rebooked (similar to other patients), but they are not given specific reminders about blood tests. This practice was in place both 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, to examine the effect of the transfer clinic on patient adherence. The clinical and research activities being reported are consistent with the Principles of the Declaration of Istanbul as outlined in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism.
Patients were divided by era; those who transferred prior to 2009 did so before the transfer clinic existed; those who transferred after 2009 attended the transfer clinic. Transition preparation was otherwise the same. The study population therefore consisted of 32 consecutive patients who had transferred to adult care in the Greater Toronto Area at 18 years of age between July 2007 and June 2011. The study hypothesis was that adherence of patients who had attended the clinic would be better than those who did not.
Baseline information recorded at the time of transfer included 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 medication doses), rejection episodes, and serum creatinine.
Non-adherent behavior was a composite measure defined as either self-reported medication non-adherence or displaying two of the following three characteristics: any non-attendance at clinic, non-attendance for blood work appointments, or undetectable calcineurin inhibitor levels. This was captured electronically in the case of missed appointments, non-attendance at clinic, and undetectable calcineurin inhibitor levels. All patients are asked about medication non-adherence at their clinic visits. This was documented electronically via the Organ Transplant Tracking Record (OTTR™, OTTR Chronic Care Solutions, Omaha, NE, USA).
The primary outcome was the difference in the number of patients exhibiting non-adherent behavior in the first year after transfer between those who attended the clinic and those who did not. Secondary outcomes were acute rejection, defined as biopsy-proven cellular or antibody-mediated rejection post-transfer according to the Banff criteria [31], and change in estimated glomerular filtration rate (eGFR) in the first and second years following transfer.
The dataset contained information on 32 patients, 16 who attended transfer clinic and 16 who did not. Continuous variables were summarized using means, and categorical variables were summarized as proportions. Bivariate analysis was performed for each variable comparing the two groups. Categorical variables were analyzed using chi-square or Fisher’s exact test (for variables with less than five expected values per cell). Wilcoxon rank-sum test was used to compare continuous variables between the two groups.
All information was obtained from the Organ Transplant Tracking Record (OTTR™, OTTR Chronic Care Solutions, Omaha, NE, USA), a computerized data management system that has been implemented throughout the Multi-Organ Transplant Program at UHN. The OTTR™ application interfaces with the hospital electronic patient record and off-site facilities to provide accessibility to patient data, results, and reports. Pediatric data was obtained from the Hospital for Sick Children electronic patient chart and nephrology clinic database.