For patients with type 1 diabetes (T1D), glycemic control is generally suboptimal during adolescence and young adulthood (age 18–25 years),1 and for the past few years the data are even more discouraging.2 Current data from the T1D Exchange clinic registry2 found glycemic control worsened in the 13- to 25-year-old age group in years 2012 to 2014, whereas all other age groups experienced either no change or an improvement in glycemic control. Peak hemoglobin A1c (HbA1c) levels occurred at age 19 years, with an average HbA1c of 9.2% (77 mmol/mol), and only 13% of young adults achieved the recommended HbA1c target of <7.0% (53 mmoL/mol).2
Adolescents and young adults with T1D, especially those leaving home or attending college, face multiple challenges when managing their diabetes. Competing social, academic, and work priorities, lack of structure to their days, changing routines, and reduced diabetes-specific support due to moving away from parents all complicate diabetes management and likely affect glycemic control.3,4 Additionally, young adults with diabetes have a higher risk of diabetic ketoacidosis, diabetes complications, and poor mental health,1,2,5–7 making them a population urgently in need of improved models for addressing their care.
This tenuous transition time is complicated by the fact patients in this age group often lose connection with their diabetes care provider and experience a significant lapse in recommended routine diabetes care.3,4,8–10 Young adults in this transitional stage report feeling their specific needs and diabetes management challenges are not sufficiently addressed in either pediatric or adult care settings and are dissatisfied with the transfer of care from the pediatric to the adult care setting.9 Patients also report a desire for enhanced pediatric transition counseling, implementation of adult clinic orientation programs, and peer support for transitioning patients. Dissatisfaction and discomfort with the system are likely contributing to young adults' disengagement with medical care. Additionally, there is evidence to suggest worsening of glycemic control with the transition to adult care,11 which may affect providers' behaviors surrounding transition and transfer of care.
Much is known about the issues and obstacles encountered by this population, but the best way to address adolescent and young adult concerns related to T1D management is not known. Comprehensive interventions are needed, not only to improve the transfer from pediatric to adult care, but more importantly, to keep adolescents and young adults engaged in clinical care (regardless of whether they are on the pediatric or adult side), address their unique needs, and improve glycemic control. This article reviews adolescent and young adult-focused models of care using telemedicine, shared medical appointments, and telemedicine in conjunction with shared medical appointments.
In 2015, Milani and Lavie12 reviewed the use of technology in chronic disease, citing poor health outcomes and low adherence to quality measures as a call to dramatically change our current health care delivery system. The authors recommended team-based care partnered with patient-centered technologies as potential ways to improve patient outcomes. When looking specifically at diabetes interventions, current technology includes applications to assist with decision-making software, communication between patient and provider, and disease analysis.
Maximizing technological resources to allow for more frequent contact with medical providers has resulted in improved medical outcomes in various populations. Telemedicine technology has been used to reach patients struggling to attend routine medical care appointments, including pediatric patients with T1D. Wood et al.13 found that patients with T1D using telemedicine for routine care were able to maintain glycemic control, increase frequency of follow-up, and decrease time missed from work and school. School-based telemedicine for T1D has also been found to improve glucose monitoring, glycemic outcomes, satisfaction, and self-management.14,15
There have also been reports of transition-focused telemedicine intervention in the wider population of adolescents with chronic disease, including T1D. Huang et al.16 developed a 2-month Internet and text-based disease management and skills-based intervention focused on general transition in adolescents with chronic disease followed by a 6-month review period. They found significant improvements in disease management tasks, health-related self-efficacy, and patient-initiated communication compared to controls.
When examining adolescents with T1D-focused telemedicine interventions, a variety of interventions have been successful in optimizing health outcomes. Lehmkuhl et al.17 implemented Telehealth Behavioral Therapy in patients age 9 to 17 years with T1D with primary outcome measures including adherence to diabetes regimen, glycemic control, and level of family discord. Patients in the intervention group decreased their HbA1c by 0.74% compared to 0.09% in the waitlist controls, but this did not reach statistical significance. Interestingly, and potentially concerning, they also found increased unsupportive and decreased caring behaviors in the parents. Parents in the intervention also reported increased unsupportive behaviors. The authors speculated the increased unsupportive and decreased caring behaviors might have been related to an increase in “task focused” or “nagging” behaviors. Lehmkuhl et al.17 suggested focusing on the interpretation of these parental behaviors in future interventions, which could be another innovative approach to this population. Harris et al.18 also delivered a behavioral intervention, the Behavioral Family Systems Therapy – Diabetes (BFST-D) using telemedicine. Their results supported the use of BFST-D delivered by telemedicine to address nonadherence and suboptimal glycemic control in adolescents with T1D. Boogerd et al.19 also completed a telemedicine intervention in adolescents with T1D, focusing on contact with the diabetes team, peer support, and disease management. The researchers found 65% of the adolescents logged on to the intervention at least once, but only 52% logged on repeatedly.
Although these adolescent-focused telemedicine interventions showed equivalence, if not superiority, to in-person interventions, the interaction with and acceptance from patients in this cohort remains challenging. That being said, telemedicine provides a feasible and acceptable avenue for working with adolescents, which has the added benefit of decreasing time missed from work and school. In a patient population already encountering multiple barriers to ideal diabetes management and routine follow-up, telemedicine should strongly be considered as an ideal platform for caring for adolescents and young adults with T1D. Finally, it is well established this population also struggles through the transition and transfer process to adult care. Providers, and the medical system as a whole, should capitalize on current success in telemedicine care models and investigate the use of telemedicine in the transfer of care.
Shared Medical Appointments
Alternative medical care approaches, specifically group visits, also known as shared medical appointments (SMA), have successfully increased patient and provider satisfaction, strengthened follow-up rates, and improved outcomes in multiple patient populations.20–22 SMA have also been cited as an effective tool for empowering patients and have been recommended as a successful method for providing more patient-focused care.23 When considering the adolescent and young adult population with T1D, increasing peer support has been suggested as an avenue to improve mental health and adherence with diabetes self-care,3,4,24 and group visits may be an efficient way to incorporate peer support into routine medical care. There are reports of success with SMA in children and adolescents with T1D,25–27 as well as additional studies focusing on the actual delivery of SMA in adolescents with T1D.28,29
Rijswijk et al.25 found more diabetes-related topics were covered in SMA than in individual patient follow-up appointments. Examination of patient-provider and patient-patient communication sequences during SMA revealed almost all patient cues, or verbal/nonverbal indications of important issues or concerns, were acknowledged by health care providers. However, if health care providers missed cues, they were addressed by other patients present in the SMA.26 Providers functioning as mediators in conversations among patients resulted in improved communication during the SMA. Patients and providers reported a higher or similar amount of information discussed during SMA when compared to standard individual appointments, including increased discussion about lifestyle. Overall, health care providers, patients, and parents were generally positive about SMA.27
In a recent pilot study, Raymond et al.28 examined “Team Clinic,” an SMA model for adolescent patients between ages 13 and 18 years with T1D. Over a 9-month period, 92 patients participated in Team Clinic appointments. Participants received increased education compared to standard visits, and providers were able to provide education to a greater number of patients in a more effective and efficient manner when compared to their routine clinic. Adolescent participants reported higher satisfaction with Team Clinics when compared to regular clinic visits. They reported feeling more comfortable in clinic, were more willing and at ease asking questions, had high inclination to recommend Team Clinic to others, and described high motivation to return to Team Clinic.
Floyd et al.29 also found encouraging findings with the use of SMA in adolescents with T1D. Thirty-two patients age 12 to 16 years completed the SMA intervention involving self-management, communication skills, goal setting, glucose pattern recognition, and peer or diabetes team support. They found HbA1c worsened in the 9 months before the study but remained stable during study. They also found significant improvements in overall quality of life, school function, psychosocial function, barriers, adherence, and communication in patients participating in the SMA intervention.
These preliminary results suggest adolescents may attend SMA more willingly and regularly when compared to regular appointments, and that they may be more likely to ask for help when needed. These positive steps in self-autonomy and self-advocacy could be related to the sense of not being alone and natural peer support stemming from the SMA model. SMA appear to be feasible replacements to individual appointments in adolescent T1D, and more importantly, they may result in stabilization of glycemic control and improved quality of life in this challenging population. Unfortunately, none of these studies specifically focused on the transfer of care from pediatric to adult medicine. However, one could hypothesize that SMA may be a feasible platform for the delivery of transfer-focused interventions in adolescents and young adults with T1D. For example, patients could attend SMA to prepare for the transition and actual transfer of care on the pediatric side, and then those transferring to a doctor in the same area would attend a SMA in the new adult clinic for their first appointment. This would allow continuity of support and “care” provided by the peers in the SMA while decreasing fear of the unknown and barriers to a successful transfer of care to the adult world.
Telemedicine and Shared Medical Appointments
Given the potential for telemedicine to increase access to medical care and SMA to increase patient satisfaction and provide peer support, an alternative approach to clinical care for young adults with T1D incorporating both techniques may be beneficial. Raymond et al.30 designed the “CoYoT1 Clinic” (pronounced 'coyote'; the acronym for Colorado Young Adults with T1D) to meet the medical care needs of young adults with T1D in a technology driven, developmentally tailored, SMA model.
CoYoT1 Clinic used Internet-based video conferencing for routine diabetes care in a population of young adults with T1D, with patients at home, school, work, or another location of their choosing.30 The average patient age was 19.8 ± 1.6 years (with patients ranging from age 18 to 23 years), and four patients participated in each clinic. CoYoT1 Clinic delivered the SMA model in a telemedicine format to address barriers to engaging young adults in care by making clinical care easily accessible, reducing time lost from work or school, and increasing peer support through the SMA platform. CoYoT1 Clinic was feasible and acceptable for young adults with T1D and resulted in high levels of satisfaction and completion of all components of the clinic (both the individual provider and group appointment). Additionally, most patients involved in the pilot study successfully downloaded data from their diabetes devices (ie, insulin pumps, glucometers, and glucose monitors) and completed routine laboratory results at a local laboratory, hospital, clinic, or other location of their choosing prior to their appointments. As a result, providers were able to access the same information during the virtual CoYoT1 Clinic visit as in a traditional, in-person appointment.
Although the CoYoT1 Clinic pilot did not primarily focus on transfer of care, the study incorporated transition-related topics and preparation skills for management in the young adult world.30 The visits were completed in a fashion that respected their competing life priorities, such as school, work, and social demands, which may make it a viable model for specifically targeting transfer of care. Additionally, the SMA structure provided an efficient way to incorporate diabetes self-management education and peer support into routine diabetes care without requiring additional efforts on the part of the patient or health care professionals. Furthermore, addressing the need for support and additional education through a patient-based telemedicine intervention made the peer interaction easily accessible to patients and more efficient than interventions requiring additional visits, or even in-person SMA. These findings again suggest a telemedicine plus SMA model for adolescents and young adults with T1D may be a successful platform for addressing the actual transfer of care from the pediatric to adult world of diabetes care.
The transition into adolescence and young adulthood is challenging, but it is even more complicated in the presence of a chronic disease such as T1D. Current medical approaches to this population are not working, having become potentially even less effective in recent years.2 New models and approaches to clinical care in this high-risk population are needed. Telemedicine, alternative care models such as SMA, or a combination of telemedicine and SMA may be potential options to more successfully, efficiently, and satisfactorily address this urgent need in our highest-risk and most challenging T1D population.
- Wood JR, Miller KM, Maahs DM, et al. Most youth with type 1 diabetes in the T1D Exchange Clinic Registry do not meet American Diabetes Association or International Society for Pediatric and Adolescent Diabetes clinical guidelines. Diabetes Care. 2013;36(7):2035–2037. doi:10.2337/dc12-1959 [CrossRef].
- Miller KM, Foster NC, Beck RW, et al. Current state of type 1 diabetes treatment in the U.S.: updated data from the T1D Exchange clinic registry. Diabetes Care. 2015;38(6):971–978. doi:10.2337/dc15-0078 [CrossRef].
- Edwards D, Noyes J, Lowes L, Haf Spencer L, Gregory JW. An ongoing struggle: a mixed-method systematic review of interventions, barriers and facilitators to achieving optimal self-care by children and young people with type 1 diabetes in educational settings. BMC Pediatr. 2014;14:228. doi:10.1186/1471-2431-14-228 [CrossRef].
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- Johnson B, Elliott J, Scott A, Heller S, Eiser C. Medical and psychological outcomes for young adults with Type 1 diabetes: no improvement despite recent advances in diabetes care. Diabet Med. 2014;31(2):227–231. doi:10.1111/dme.12305 [CrossRef].
- Butwicka A, Frisén L, Almqvist C, Zethelius B, Lichtenstein P. Risks of psychiatric disorders and suicide attempts in children and adolescents with type 1 diabetes: a population-based cohort study. Diabetes Care. 2015;38(3):453–459. doi:10.2337/dc14-0262 [CrossRef].
- Bryden KS, Dunger DB, Mayou RA, Peveler RC, Neil HA. Poor prognosis of young adults with type 1 diabetes: a longitudinal study. Diabetes Care. 2003;26(4):1052–1057. doi:10.2337/diacare.26.4.1052 [CrossRef]
- Duke DC, Raymond JK, Shimomaeda L, Harris MA. Recommendations for transition from pediatric to adult diabetes care: patients' perspectives. Diabetes Manage. 2013;3(4):297–304. doi:10.2217/dmt.13.26 [CrossRef]
- Garvey KC, Beste MG, Luff D, Atakov-Castillo A, Wolpert HA, Ritholz MD. Experiences of health care transition voiced by young adults with type 1 diabetes: a qualitative study. Adolesc Health Med Ther. 2014;5:191–198. doi:10.2147/AHMT.S67943 [CrossRef].
- Peters A, Laffel LGroup ADATW. Diabetes care for emerging adults: recommendations for transition from pediatric to adult diabetes care systems: a position statement of the American Diabetes Association, with representation by the American College of Osteopathic Family Physicians, the American Academy of Pediatrics, the American Association of Clinical Endocrinologists, the American Osteopathic Association, the Centers for Disease Control and Prevention, Children with Diabetes, The Endocrine Society, the International Society for Pediatric and Adolescent Diabetes, Juvenile Diabetes Research Foundation International, the National Diabetes Education Program, and the Pediatric Endocrine Society (formerly Lawson Wilkins Pediatric Endocrine Society). Diabetes Care. 2011;34(11):2477–2485. doi:10.2337/dc11-1723 [CrossRef].
- Lotstein DS, Seid M, Klingensmith G, et al. Transition from pediatric to adult care for youth diagnosed with type 1 diabetes in adolescence. Pediatrics. 2013;131(4):e1062–1070. doi:10.1542/peds.2012-1450 [CrossRef].
- Milani RV, Lavie CJ. Health care 2020: reengineering health care delivery to combat chronic disease. Am J Med. 2015;128(4):337–343. doi:10.1016/j.amjmed.2014.10.047 [CrossRef].
- Wood CL, Clements SA, McFann K, Slover R, Thomas JF, Wadwa RP. Use of telemedicine to improve adherence to American Diabetes Association standards in pediatric type 1 diabetes. Diabetes Technol Ther. 2016;18(1):7–14. doi:10.1089/dia.2015.0123 [CrossRef].
- Izquierdo R, Morin PC, Bratt K, et al. School-centered telemedicine for children with type 1 diabetes mellitus. J Pediatr. 2009;155(3):374–379. doi:10.1016/j.jpeds.2009.03.014 [CrossRef].
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- Huang JS, Terrones L, Tompane T, et al. Preparing adolescents with chronic disease for transition to adult care: a technology program. Pediatrics. 2014;133(6):e1639–1646. doi:10.1542/peds.2013-2830 [CrossRef].
- Lehmkuhl HD, Storch EA, Cammarata C, et al. Telehealth behavior therapy for the management of type 1 diabetes in adolescents. J Diabetes Sci Technol. 2010;4(1):199–208. doi:10.1177/193229681000400125 [CrossRef].
- Harris MA, Freeman KA, Duke DC. Seeing is believing: using Skype to improve diabetes outcomes in youth. Diabetes Care. 2015;38(8):1427–1434. doi:10.2337/dc14-2469 [CrossRef].
- Boogerd EA, Noordam C, Kremer JA, Prins JB, Verhaak CM. Teaming up: feasibility of an online treatment environment for adolescents with type 1 diabetes. Pediatr Diabetes. 2014;15(5):394–402. doi:10.1111/pedi.12103 [CrossRef].
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