Pediatric Annals

Special Issue Article 

A Review of Interventions Aimed at Facilitating Successful Transition Planning and Transfer to Adult Care Among Youth with Chronic Illness

Jill Weissberg-Benchell, PhD, CDE; Jenna B. Shapiro, MA

Abstract

This article reviews studies that developed interventions aimed at facilitating the transition process and/or the transfer of youth with chronic illness to adult programs during the past decade. Three key intervention approaches have been studied. Data assessing the impact of transition coordinators suggest that the most successful outcomes occur when coordinators meet with patients prior to the transfer of care, support them as they negotiate the adult programs, and facilitate appointment keeping. Data assessing the impact of transition clinics suggest that the key to positive outcomes is helping patients develop a trusting relationship with the adult providers before fully transferring their care to the adult clinic. Similar conclusions can be drawn for transition programs, where it appears that the opportunity to discuss and plan transition with a pediatric provider over time and to meet with both the pediatric and adult providers simultaneously are beneficial for facilitating successful transfer to adult care. Although aspects of these care processes appear promising for improving transition success, this review identifies areas that need further study. We argue that studies are needed that examine individual patient and family-focused interventions as well as looking at other potential interventions in the health care system. [Pediatr Ann. 2017;46(5):e182–e187.]

Abstract

This article reviews studies that developed interventions aimed at facilitating the transition process and/or the transfer of youth with chronic illness to adult programs during the past decade. Three key intervention approaches have been studied. Data assessing the impact of transition coordinators suggest that the most successful outcomes occur when coordinators meet with patients prior to the transfer of care, support them as they negotiate the adult programs, and facilitate appointment keeping. Data assessing the impact of transition clinics suggest that the key to positive outcomes is helping patients develop a trusting relationship with the adult providers before fully transferring their care to the adult clinic. Similar conclusions can be drawn for transition programs, where it appears that the opportunity to discuss and plan transition with a pediatric provider over time and to meet with both the pediatric and adult providers simultaneously are beneficial for facilitating successful transfer to adult care. Although aspects of these care processes appear promising for improving transition success, this review identifies areas that need further study. We argue that studies are needed that examine individual patient and family-focused interventions as well as looking at other potential interventions in the health care system. [Pediatr Ann. 2017;46(5):e182–e187.]

The need for a planned transition from pediatric to adult health care services for youth with chronic illness has been recognized by the Office of Disease Prevention and Health Promotion,1 the Society for Adolescent Medicine,2 and by a consensus of the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians.3 The transfer of care from pediatric to adult providers typically occurs during late adolescence and early adulthood, a developmentally vulnerable time often characterized by poor judgment and decision-making, risk-taking behaviors, and emotional reactivity.4 Arnett5 coined the term “emerging adulthood” for 18- to 25-year olds, recognizing that maturation is ongoing, particularly in relation to independent decision-making and accepting responsibility for one's actions. Because many of today's youth do not assume traditional “adult” roles until their mid to late 20s, youth with chronic illness are particularly vulnerable during the period of emerging adulthood, with increased risk for worsening adherence and medical outcomes as well as poor psychosocial outcomes.6–9

The transition process includes significantly more than the transfer of care. Transition also includes patients assuming increasing responsibility for independent self-care over time, including adherence behaviors, communicating with members of the health care team, making and keeping medical appointments, as well as monitoring and renewing prescriptions. In addition, transfer of care often co-occurs with other events and processes associated with assuming independence, such as moving away from home and the support of primary caregivers, taking on job responsibilities, possibly attending college, and navigating romantic relationships. Often, struggles occur around the time of transfer to adult care due to the lack of important medical and health care information and lack of experience negotiating the health care system. Therefore, planning the transition process is best accomplished well ahead of the actual transfer to adult care. It is this overall process, including the transfer of care, that is known as the “transition.” Given the high risk to youth with chronic health conditions during this vulnerable developmental period, the limited empirical research available to guide development of transition-readiness interventions is surprising.

Existing programs aimed at facilitating transition-related skills, and ultimately transfer of care to adult programs, have not adequately met the needs of these youth, with estimates suggesting 60% do not receive the services necessary to successfully transfer, such as programs to improve independence in self-care, knowing how to make medical appointments, or understanding their medical regimen.10 Additionally, there is a marked decline in clinic attendance around the time of transition,11–17 reduced access to necessary medical services,11 and corresponding adverse medical outcomes.6–8 Approximately 65% of transitioning youth reported at least one adverse outcome due to difficulty accessing medical care,11 including worsened medical outcomes,8,13–15 and increased complications.8,14,15

Barriers to successful transfer are many. “Emerging” adults are less likely to have health insurance than other age groups18–20 and more likely to delay accessing health care due to cost.18–20 Moreover, whereas pediatric clinics often offer multidisciplinary teams and are family-focused,21 adult clinic visits are typically shorter, patient-focused, and subspecialists (eg, nutrition, psychology) are not embedded in the clinic.21–25 In addition, most of the existing transition literature has focused on policy2,4,26 or physician training,27–30 not transition readiness, and has involved retrospective research designs focused on patient satisfaction with the transfer process22,31–34 or patient recommendations about program changes to improve the transfer process.35 Vital outcomes, such as psychosocial functioning and health status, are rarely assessed.36,37

During the past decade, researchers have developed a number of interventions aimed at facilitating the transition process and/or facilitating the transfer to adult programs. Most of these interventions focused on changes in how clinics provide care to patients embarking on the transition process. Some interventions have offered transition coordinators focused on helping the patient navigate the adult medical system, some have developed specific transition clinics aimed at the unique needs of emerging adults, and some developed multicomponent transition-planning programs. This article reviews studies that developed such interventions in the past decade. It then offers suggestions regarding gaps in our intervention research and offers recommendations for future research.

Transition Coordinators

Transition coordinators are designated clinic staff responsible for communication with patients, appointment scheduling, and, in some cases, facilitation of individual or group meetings to support the transition process. Holmes-Walker et al.38 assessed the use of a transition coordinator in combination with offering a multidisciplinary transition visit in an adult hospital for youth with type 1 diabetes (T1D) age 15 to 25 years. Coordinators provided appointment reminders, rebooked missed appointments for patients, and offered after-hours phone support for sick day management questions. The program goal was for participants to attend two adult-clinic appointments per year, and more than 80% of program participants achieved that goal. However, the American Diabetes Association standards of care39 is four clinic appointments per year and the authors did not report the percent of participants meeting that standard. Additional findings for this program suggest improvements in glycemic control and in decreased admissions for acute complications.38 Similarly, Van Walleghem et al.40 assessed the impact of a transition coordinator (termed a systems navigator) for youth with T1D. The systems navigator facilitated making appointments with adult providers, maintained telephone and email contact with patients, identified barriers to access to adult care, and offered a monthly social group for emerging adults transitioning to adult programs. The research team reports that only 11% of their participants failed to transfer to adult care, an improvement from 40% failing to transfer prior to the start of this program. In another study, a transition coordinator was offered for youth who underwent a liver transplant.41 The coordinator met with patients twice prior to the formal transfer to adult care, which occurred at approximately age 21 years. The coordinator helped schedule adult-provider appointments and facilitated communication between the pediatric and adult providers. Findings suggest that patients who met with the coordinator showed stable rates of adherence to the medical regimen through the transfer process, whereas those who transferred prior to the arrival of a transition coordinator showed declines in adherence.

These studies suggest that partnering patients with a health care team member who will keep in contact with patients during the transition years, and help them make and keep medical appointments, leads to improved outcomes. Although the improvements in outcomes reported in these studies are promising, none of the these interventions compared their findings with a randomized control group.

Two studies did compare the impact of a transition coordinator with usual care. One research team, focusing on youth with juvenile idiopathic arthritis (JIA), offered a transition-coordinator program to 27 adolescents and their families, and compared outcomes to 45 youth who did not participate in the program.42 In this study, patients in the intervention group met with a transition coordinator twice, and then they were invited along with their parents to participate in an information day to learn about transfer to adult care. Participants then worked with the coordinator to develop an individualized transfer plan. Improvements (small to medium effect sizes) in self-reported quality of life and illness-related knowledge were noted for the intervention group. Data regarding successful transfer to adult programs were not provided.

Another research team assessed the impact of a transition coordinator in a pilot, randomized controlled trial comparing the impact of a transition coordinator with usual care among youth with T1D.43 Fourteen adolescents were enrolled in the intervention group and 12 were in the control group. The intervention group was provided with information about transition planning via both written material and material saved on a USB (universal serial bus) memory stick. They were also told how to contact the transition coordinator with questions and how to contact adult providers to schedule appointments. The transition coordinator then called participants 1 week after their last visit with their pediatric provider, and again at 3, 6, and 12 months after that last pediatric visit. No differences in outcomes were noted between the intervention and control groups. It appears that the key aspect of the transition coordinator is meeting with the patient prior to the transfer of care and supporting them as they negotiate the adult programs while facilitating making and keeping appointments; merely calling them is not sufficient to affect health outcomes during transfer to adult care.

Transition Clinics

Transition clinics typically offer care for patients in the older adolescent/emerging adult age range. Patients may be able to meet others in their age group, and providers focus discussions on the needs of patients in this age group as well. Discussions about preparing for adult care are often part of transition clinics, and many offer the opportunity to meet with adult providers. A number of research groups chose to evaluate the impact of a young adult or transition clinic on key outcomes related to transition planning and transfer of care. Lane et al.44 compared the difference in glycemic control between patients age 15 to 25 years with T1D attending a young adult clinic and those who received standard care. No differences were noted between groups. Similar findings were noted by Gleeson et al.45 after they instituted a young person's clinic for youth with congenital adrenal hyperplasia. Participants in the young person's clinic met with both pediatric and adult providers once prior to transferring to the adult provider. No differences in rate of adult clinic attendance was noted between the two groups, with one-half of all participants failing to follow up with adult providers.

However, a more positive finding was reported by Harden et al.46 who offered an integrated transition clinic for youth who had undergone a kidney transplant. This team compared nine teenagers attending an integrated transition clinic with 26 teenagers who received standard care. The transition clinic was offered quarterly, with both adult and pediatric providers seeing the patients simultaneously. The program began when patients were age 15 years and ended when they were transferred to the adult program at age 18 years. Significant differences were found between the two groups, with 66% of the participants in the standard care group experiencing transplant failure compared with none of the transition clinic participants experiencing such negative health outcomes. This 3-year transition clinic (in contrast to Gleeson's one-time clinic visit) program may have allowed patients the ability to develop a trusting relationship with the new providers before fully transferring their care to the adult clinic. Developing a relationship with a health care provider also appeared to be the key to positive outcomes among the studies of transition coordinators.

Transition Programs

In addition to transition coordinators and transition clinics, some teams chose to facilitate transition planning and transfer of care by developing a more comprehensive transition program. One unifying component for most of these programs was the opportunity for patients to meet both their pediatric and adult providers in a clinic setting at least once. Chaudhry et al.47 developed a team approach for facilitating the transfer of youth with cystic fibrosis. First, a multidisciplinary pediatric team met with families to discuss the transition process and reviewed possible adult providers to whom families might consider transferring care. Then, that adult provider attended at least one of the pediatric appointments. Patients were also invited to tour the adult facility. Collectively, patients and providers would decide if it was time to schedule an adult clinic appointment or remain in the care of the pediatric program. Families participating in this program reported a higher level of satisfaction with their pediatric program than families who did not participate in the transition program; however, no information about successful transfer to adult care was reported. Hankins et al.48 compared a multicomponent transition program (n = 34) with standard care (n = 49) for youth age 17 to 19 years with sickle cell disease. Participants in the transition program were offered a tour of the adult program, participation in a lunch discussion with pediatric staff to discuss transition planning, and help scheduling the first adult clinic appointment with the support of a nurse case manager. Both patients and health care professionals stated the transition program was helpful. Significant differences in adult clinic attendance were noted, with 74% of the intervention group seeing an adult provider within 3 months of their last pediatric appointment compared to only 33% of the control group seeing an adult provider in that time frame.

A similar program was created in which a pediatric endocrinologist met with patients with T1D approximately 1 year prior to transfer to discuss the transition process, continued discussion about transfer throughout the year, and had the adult endocrinologist meet the patient during their last pediatric clinic visit.49 When comparing those who participated in this program (n = 30) to a standard-care control group (n = 32), significant differences in adult clinic attendance were noted, with 99% of transition program participants making an appointment with an adult provider compared with only 31% of the control group doing so. In addition, program participants showed a significant improvement in glycemic control, whereas those in the comparison group showed a trend toward worsening metabolic control.

Logan et al.50 also evaluated a transition program for youth with T1D by offering a clinic for patients age 17 and 18 years, three times per year, in the same location as the adult clinic. Both pediatric and adult providers attended this clinic, allowing patients the opportunity to meet the providers to whom they would transfer their care. Moreover, the transition program offered an evening event where transitioning youth were invited to meet the adult physician, nurse educator, dietitian, and psychologist prior to transferring their care. Results suggest that program participants (n = 93) had better glycemic control over time (13% achieved target hemoglobin A1c prior to program start versus 23% at 8 months and 33% after 3 years). Sequeira et al.51 assessed their transition program for youth with T1D via a prospective, nonrandomized, two-group design. The transition program included diabetes education at each quarterly clinic visit, a case manager to facilitate clinic attendance and to facilitate finding an adult provider that accepted the patient's insurance, the option to transfer to a young adult clinic, access to specialized carbohydrate-counting classes, and an invitation to join a social-networking website for peer support. Fifty-one youth were enrolled in the intervention group and compared with 30 youth who received standard care. Glycemic control improved in the intervention group and worsened in the control group. Moreover, 78% of intervention group participants attended at least one adult clinic visit.

Comprehensive transition programs that incorporate planned meetings with pediatric and adult providers and include multidisciplinary support were associated with improved satisfaction with the transition process, better health outcomes, and higher adult clinic attendance. In particular, the opportunity to discuss and plan the transition with a pediatric provider over time and to meet with both the pediatric and adult providers simultaneously appear to be beneficial for facilitating transition.

Two research teams focused on facilitating transition readiness by helping patients build needed skill sets. Betz et al.52 developed a cognitive-behavioral program for youth with spina bifida that was focused on transition-specific skills. Thirty-one youth were enrolled in the cognitive-behavioral group, and 34 received usual care. This program was offered over a 2-day period, with three specific modules. Participants spent 6 hours in the program. No differences in outcomes were noted between the two groups. Similarly, Markowitz and Laffel53 offered a monthly support group for 12 people age 18 to 30 years who had T1D. The group was offered once per month for 5 months and focused on building motivation for daily self-care tasks and creating an environment conducive to peer support. Neither glycemic control nor clinic attendance rates were different after the group ended than they were before it began; however, participants did report a decline in diabetes-specific burden and an increase in self-care behaviors.

Summary of Findings and Future Directions

The intervention studies reviewed in this article focus primarily on changing the system of care for adolescents or emerging adults by either establishing a relationship with a transition coordinator who can help patients navigate the challenges of obtaining and maintaining adult care services, by offering a unique young adult clinic that allows patients to work with their pediatric provider while developing a relationship with an adult provider, or by developing peer supports. According to the social-ecological model of readiness for transition by Schwartz et al.,54 multiple systems should be considered for intervention that may affect a patient's transition readiness and success in adult care. Within the medical care setting, this model recommends a number of potential targets for both patients and their caregivers that include improving developmental maturity, health and transition knowledge, skills and self-efficacy, beliefs and expectations about transition and adult care, psychosocial functioning, goals for transition, and relationships with adult providers. Each of the intervention approaches reviewed in this article (transition coordinators, transition clinics, and comprehensive transition programs) have the potential to facilitate patient autonomy by teaching patients how to make their own medical appointments and improve independent self-care behaviors. Focusing on illness-specific knowledge and facilitating psychosocial well-being can also be a focus of these intervention strategies. Finally, each intervention approach can facilitate coordination with adult programs and help participants develop a relationship with an adult provider while still being supported by their pediatric team. Based on results from the reviewed studies, targets that appear particularly critical for transition success include assisting patients with navigating care systems given the constraints of developmental maturity and creating a relationship between patients and adult providers.

The studies reviewed here provide important information on the state of the literature regarding the effectiveness of transition coordinators, transition clinics, and comprehensive transition programs. Although aspects of these care processes appear promising for improving transition success, this review identifies critical areas for future study. Few studies identify health-related outcomes and none identify post-transition attendance at adult clinics beyond the first visit, so the conclusions drawn regarding effectiveness are preliminary.

Most studies focused on the individual patient without considering the family system, a critical point of intervention that is likely promising for facilitating transition readiness and transfer to adult care. In addition, interventions have primarily focused on targets within the pediatric medical care context, but research is needed on intervention work in other environments, including adult health care settings, and systemic factors such as targets for improving access to insurance coverage and provider reimbursement for transition services. Thus, studies are needed that look at individual and family-focused interventions as well as looking at other potential health care system interventions. Overall, the benefits of transition coordinators, clinics, and programs appear promising for improving outcomes among a vulnerable emerging adult population, and this review identifies key areas for future research to improve care.

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Authors

Jill Weissberg-Benchell, PhD, CDE, is a Professor, Department of Psychiatry and Behavioral Health, Ann & Robert H. Lurie Children's Hospital of Chicago. Jenna B. Shapiro, MA, is a Doctoral Candidate, Department of Psychology, Loyola University of Chicago.

Address correspondence to Jill Weissberg-Benchell, PhD, CDE, Department of Psychiatry and Behavioral Health, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 E. Chicago Avenue, Chicago, IL 60611; email: jwbenchell@northwestern.edu.

Disclosure: The authors have no relevant financial relationships to disclose.

10.3928/19382359-20170421-01

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