Literature indicates that there is a lack of transition of care for patients living with diabetes from pediatric endocrinology clinics to adult endocrinology clinics.
The American Diabetes Association provides a position statement that recommends the transition of adolescent care that starts at different stages of development.1 This process of the transition of care involves the shift of the different diabetes management skills from the caregiver to the patient to promote self-management.1 Literature indicates that there is a lack of transition of care for patients living with diabetes from pediatric endocrinology clinics to adult endocrinology clinics.1-3 It has been reported that only 40% of pediatric patients receive the necessary preparation for transitioning care from pediatric clinics to adult clinics.1 Few high-quality studies have been completed assessing transitions of care interventions. Additional research is needed to identify and compare components of transitions of care structured programs to determine which are most effective at improving patient outcomes.2
It is known that pediatric patients moving to an adult clinic without a formal transition of care results in worse outcomes. These outcomes include 2.5 times higher risk of inadequate glycemic control (A1C >9%), more frequent hospitalizations due to complications (>9.5 admissions per 100 patient years), and suboptimal appointment management rates (calling the doctor, making appointments, applying for health insurance, arranging rides, following up on lab results).1,4
To prevent these poor outcomes, a structured protocol is needed to aid in transitioning patients consistently throughout their care from pediatric endocrinology and into adult endocrinology care. In areas where endocrinology care is limited, care may be transferred to other types of providers that are comfortable with providing endocrinology care in primary care settings.
Many lifestyle changes and challenges often occur in the lives of this patient population between their adolescent years and early 20s, including changes in education, occupation, and living arrangements.3 Along with the sudden increase in autonomy during these years, many teens and young adults struggle with managing their diabetes. Each person’s transition should be individualized yet structured, with an emphasis on diabetes self-management due to life changes that confer a greater level of independence from parents or caregivers. The transition of care should be centered around the person’s readiness and ability to navigate the adult health care system independently.
Any barriers to self-management and obtaining care must be identified, and solutions should be sought out to prevent future complications. A study by Garvey and colleagues5 surveyed 258 young adults who recently transitioned to adult care. They found that young adults who identified any significant barriers experienced a nearly 5-fold increase in risk for gaps in medical care.5 Discussions regarding complications and preparations for transition must take place before the actual transition to adult care systems.1
Additionally, it may be valuable to observe the effects of group education for the purpose of transitioning for both the parents and the patients who will be transitioning. There are no current studies that include pharmacist involvement in group education for transitioning.6 When group transition education is provided, it can be beneficial for both the clinic and the patient by being more cost-effective and allowing the patients to form relationships with others who are experiencing the same transition.6
Many lifestyle changes and challenges often occur in the lives of this patient population between their adolescent years and early 20s, including changes in education, occupation, and living arrangements.
Several studies have reported that there is a need for further research to create a standard protocol for pediatric patients living with diabetes transitioning from a pediatric to an adult clinic.1,5,6 However, none of the studies mentioned pharmacy as a discipline involved in the transition process.
This study was the implementation of a structured interdisciplinary transition process for people living with diabetes who are transitioning from the pediatric clinic to the adult clinic. The interdisciplinary team included the pediatric endocrinology center’s nurse practitioners, endocrinologists, nurses, medical assistants, social worker, dietitians, pharmacists, and certified diabetes care and education specialists (CDCESs).
The purpose of this study was to limit barriers to care and to facilitate a smooth transition to adult care by providing a structured transitions of care process led by a pharmacist. To fulfill this goal, education was provided to the patient and family regarding self-management of diabetes. The secondary goal of this study was to evaluate the change in transition assessment questionnaires from baseline. A structured transitions of care program was implemented to ease the patients’ struggle by providing adequate knowledge and education to patients and their families and by preparing the patient throughout the process.
The purpose of this study was to limit barriers to care and to facilitate a smooth transition to adult care by providing a structured transitions of care process led by a pharmacist.
This was a prospective cohort study from February 2020 to February 2022 in which patients included were led through a structured protocol of the transitioning of care from a pediatric clinic to an adult endocrinology clinic. This protocol was approved through the institutional review board at the University of Mississippi Medical Center (Protocol No. 2020-0004).
This protocol was a pharmacy-led transitions of care program developed and implemented at a pediatric endocrinology clinic. A referral was placed within the EMR to better identify patients that were ready for transitions. The providers were provided with the referral and what the structure of the transitions protocol would entail to be able to refer patients to the service. This was emailed to the providers and presented at staff meetings. The reports ran within the EMR to identify which patients were eligible for transitions protocol and study. Data were collected using EPIC (Verona, WI), and an EMR was used to identify the patient population.
Patients included in this program were 16 years old and older and had a primary diagnosis of type 1 or type 2 diabetes. Ideally, the transitions process should be started in patients 12 and older.1 The patients must have attended at least 2 visits at the pediatric endocrinology clinic within the calendar year. Patients were excluded from the study if they were not diagnosed with diabetes, if English was not their primary language, if they were younger than 16 years of age or older than 22 years of age, or if they had not attended at least 2 pediatric endocrinology clinic visits within the calendar year.
The data and measurements collected included gender, BMI, type of diabetes, date of diagnosis of diabetes, A1C at baseline and follow-up, mode of insulin administration, rate of appointment attendance, insurance status before and after transition, survey results at baseline and follow-up, future transition plan, and readiness to transition scores at baseline and follow-up. The adult provider transition plan, if possible, would include meeting with the adult provider during their last visit with pediatric endocrinology, whether that be in person or virtually. Additionally, information would be transferred from the pediatric endocrinology office to the adult endocrinology office if the provider was outside of the health system EMR. The appointments included an initial visit and 2 follow-up visits, with each appointment lasting approximately 1 hour (Figure 1).
At the initial clinic visit, patients were verbally asked for consent to participate in the study and corresponding surveys. If consent was given, the pediatric patient completed the Self-Transitioning from the Endocrine Society, and the parents completed a corresponding parent survey, Transition Readiness Assessment Questionnaire (TRAQ) for Parents/Caregivers, as they waited for the practitioner.7 Upon entering the exam room, the practitioner collected the survey(s) and performed the routine clinic visit, taking necessary vital and laboratory measurements. The responses to the survey were addressed after the routine visit was performed.
Patient education was provided based on survey response and level of knowledge of diabetes. There was an interdisciplinary approach, with counseling and additional assistance provided by pharmacists, clinical and administrative nurses, registered dietitians, nurse practitioners, endocrinologists, social workers, and licensed professional counselors. Patient education addressed medication and therapy management, navigation of lifestyle changes, and glycemic monitoring and targets. In addition, the patient was educated in handling emergency situations and guided in creating an emergency plan for high blood glucose, low blood glucose, and illness.
The “Diabetes Management Handbook” developed by the Division of Pediatric Endocrinology and Diabetes at Children’s of Mississippi was used to educate the patients transitioning from a pediatric to an adult clinic. The counseling information on topics such as ketone management, insulin storage, insulin injection sites, blood glucose goals preprandial and postprandial, carbohydrate management, A1C testing, and insulin dose calculations were from the “Diabetes Management Handbook.” For the survey questions regarding social, emotional, and cognitive issues, the patient was referred to the child social worker or psychologist for consultation. Additionally, those that expressed concerns with insurance coverage following transition were referred to a social worker.
The patient’s readiness to transition to an adult provider was assessed based on how confident they were in independently refilling their prescriptions and creating their clinic appointments, understanding their insurance and what to do if they need a prior authorization, and finding a specialist or diabetes organization if needed.7 The protocol aimed for the pediatric patient to independently establish care with an adult provider and confirm the date of their first appointment. The patients were also educated on the importance of glycemic control, routinely updating the diabetes team on changes in their health, and follow-up visits. In addition to followup visits to assess A1C every 3 months, the patient was informed of other important health exams related to diabetes, such as an annual eye exam, urine test, lipid screening, and other laboratory work. Any specific goals or concerns of the patient or parent/caregiver were addressed.
At the follow-up visit that coincides with the routine medical appointment, education covered from the first visit was reviewed, and additional education was provided from the “Diabetes Management Handbook.” The team evaluated whether the patient was able to identify an adult provider for the future of their care and further discussed the process of transitioning.
In addition to the patients’ routine visits, a group education session was held to address collective concerns from both parents and patients. During this group class, the pharmacy team provided a brief summary of the diabetes handbook and applied interactive components and scenarios to keep the patients engaged. Topics included counting carbohydrates, estimating insulin needs, administering insulin, and proper actions regarding situations with hypoglycemia and hyperglycemia. Additionally, the session addressed what to do prior to alcohol intake or exercising. Diabetic ketoacidosis education was provided along with the importance of checking ketones and how to check ketones. The session ended with recommendations for smartphone applications that assist with diabetes management.
During the study period, there were 27 patients referred to the program, 15 were male, and 12 were female. Of these, 26 had type 1 diabetes, and 1 had type 2 diabetes. The average BMI was 26.85 kg/m2, and the average duration of diabetes was 8 years. The baseline A1C was 9.4% (79 mmol/mol). Half the patients had commercial insurance, and the other half was insured via the state Medicaid plan. For insulin delivery, 59% were utilizing insulin injections, whereas the other 41% were utilizing pumps. The first transitions of care visit was attended by 66% of the patients, and 34% did not attend. The second transitions appointment was attended by 40% of the patients, and the remainder are still in progress and have had a 60% no-show rate. The third transitions appointment and class were attended by 7% of patients, all of whom have had a successful transition to adult endocrinology. The transitions survey was administered and collected at baseline and again prior to transitions. Anecdotally, parents and patients reported this protocol and program to be a useful resource when transitioning from the pediatric endocrinology clinic to an adult endocrinology clinic.
As discussed in Diabetes Care, the transition period from pediatric to adult care is prone to fragmentation in health care delivery, and there may be worse outcomes and an impact on health care costs and the quality of care.9 New responsibilities occur during this transition, such as changing occupations, moving to a new area, or continuing education away from home. Patients may then be responsible for scheduling their own appointments, financing their medications, and potentially navigating insurance independently and become fully responsible for their diabetes during this time frame.9
As stated previously, there is a need for a standardized protocol. The gap in care was identified with patients being lost to follow-up or staying within the clinic until 22 years of age without any formalized transitions process within the center. The methods in which patients were recruited were sustainable, but ultimately, providers would mainly refer patients when they were reminded of the process or emailed about the protocol and study.
There are several factors that may go into determining whether a patient is prepared for the transition process and a structured transition plan that needs to be in place at each clinic. First, a transitions policy must be created, the progress must be tracked, and the skills assessed. The transitions process should be planned, and then the transfer of care should occur, followed by continuing care provided by an adult provider.8
The visits centered around the skills necessary for 16-, 17-, and 18-year-old patients to independently manage their diabetes. Visits were focused on self-management skills with the addition of the education provided from the diabetes handbook, which mirrored the information provided to parents at diagnosis related to diabetes self-management education and support. Although only 1 patient had completed this transition process within the study, this protocol laid the framework for the clinic to continue this process and continue to remove barriers to the transition of care from a pediatric endocrinology clinic to an adult endocrinology clinic.
There is now an expectation of this process occurring that the providers assist in the referral process, and each member of the team is consulted during the transitions process. For example, dietitians were consulted for advice relating to foods at college and how to navigate patients’ first year of college. The social worker was consulted for the navigation of the insurance process for a patient that had entered the workplace and other insurance concerns. The counselor was consulted when the patient had difficulty with coping with the upcoming changes and burnout that is associated with the diabetes disease burden.
CDCESs may be pulled in different directions, from providing education for patients that have multiple readmissions for diabetic ketoacidosis to those that are newly diagnosed, so it was helpful to have the process lead by a CDCES who was also a pharmacist. The medical center now has a process in place in which patients can begin the transitions process at ages earlier than 16, and each year, the protocol can include younger patients.
This is the first protocol to utilize the different transition tools such as an educational handbook that covers diabetes self-management education; interactive scenarios; group classes; an assessment, evaluation, and education related to the patient’s readiness to transition; and targeted visits with members of the interdisciplinary team.
This protocol has provided an avenue and a structured process within the clinic to transition patients from the pediatric endocrinology clinic to adult care. The protocol was based on literature that provides examples of transition surveys and structures that center around a team approach. This protocol also used a team approach and was led by a pharmacist and CDCES. This provided a familiar face at each visit for the patient and their family to better work through the different areas of diabetes self-management education and support. Patients and families, when presented with the opportunity to go through a structured transitions process, anecdotally were eager to start the process at times and at times were hoping that they could remain a part of the pediatric clinic. Another option is to transition patients with type 1 and type 2 diabetes to their primary care provider if they were comfortable with the management of their diabetes because there may be limited access to endocrinologists in some areas.
With this clinic being the only pediatric endocrinology office at the state’s only pediatric hospital, there are patients traveling from 4 to 5 hours away for clinic visits. As stated in the results, the no-show rates were greater than 50%. During the height of the COVID pandemic, telehealth was offered to offset this barrier, but internet connections were not reliable, leading to low quality appointments. Communication with parents and patients about the process could be more standardized as this process continues. With patients being diagnosed on average for 8 years, this is something that could be introduced earlier than 16, 17, and 18 years of age. Additionally, this service was not always paired with the medical appointment with the endocrinologist or nurse practitioner due to scheduling conflicts, which also contributed to the lower show rates. Ideally, this could be an integrated process as opposed to additional education visits. With the pandemic occurring in the middle of this study, this posed challenges because patients were unable to return to clinic for lab work and visits and had limited access to stable internet connections for telehealth. Another difficulty was when patients “no-showed” following the referral process and our center did not have a protocol in place to reschedule those patients automatically.
This is the first protocol to utilize the different transition tools such as an educational handbook that covers diabetes self-management education; interactive scenarios; group classes; an assessment, evaluation, and education related to the patient’s readiness to transition; and targeted visits with members of the interdisciplinary team. This protocol can be expanded to initiate when the patient is first diagnosed. It can be ensured that annually, patients are assessed for their age-appropriate skills. Further connections and feedback can be solicited from the transitions team and the adult endocrinology team to continually improve this process.
There is a consensus that there is a lack of pharmacist involvement in pediatric transition of care. This is a potential area of advancement for pharmacists, especially if they are part of the pediatric patients’ health care team. Pharmacists can play an integral role in educating patients on medication management, lifestyle changes, and proper glycemic targets and monitoring. Because CDCESs are best poised to provide this education, this protocol adds to the body of literature of CDCESs being able to lead the transitions of care process.10 Additionally, appointments can be grouped together with their endocrinologist to increase the show rate and grouped during times of the year when students or those who are working can more easily take time off. Because there is a lack of literature that utilizes transitions protocols utilizing CDCESs, this will make way for future studies.10 Future studies can continue to follow patients after the transfer of care to ensure that glycemic outcomes are met, relationships are formed, and barriers to access to care are reduced.
Ha K. Phan, PharmD, CDCES, BCACP; Helen Hua, BSPS; Caroline Culley, PharmD; and Mary Martin, PharmD, are with the University of Mississippi School of Pharmacy in Oxford, MS.
The authors wish to thank the nurses, social workers, dietitians, counselors, endocrinologists, and nurse practitioners at the University of Mississippi Medical Center Division of Pediatric Endocrinology.
The authors declare having no professional or financial association or interest in an entity, product, or service related to the content or development of this article.
The authors declare having received no specific grant from a funding agency in the public, commercial, or not-for-profit sectors related to the content or development of this article.
Ha K. Phan https://orcid.org/0000-0002-9118-8509
Future studies can continue to follow patients after the transfer of care to ensure that glycemic outcomes are met, relationships are formed, and barriers to access to care are reduced.
