After transplantation, individuals are expected to make a lifelong commitment to manage their illness, including a willingness to adhere strictly to immunosuppressive medication schedules, active engagement in their care through frequent clinic visits, and ongoing lifestyle adjustments. There is strong and consistent evidence that adolescent and young adult (AYA) solid organ transplant (SOT) recipients do not have all the necessary skills to maintain this commitment and are subsequently at increased risk of graft loss in part due to decreased adherence and attendance in clinic.1-4 Consequently, graft failure and mortality rates for these individuals may be twice as high as that of older adults or children whose health is more directly managed by parents/guardians.5,6
Actively preparing AYA SOT recipients for transition to adulthood has been shown to promote better outcomes.7 A consensus statement in 2008 by the American Society of Transplantation (AST) and American Society of Transplant Surgeons (ASTS) emphasized the importance of developing tools to improve transition readiness for AYA SOT recipients.8 Subsequently, work has centered around the development of transition tools to improve transfer of care to adult specialists that primarily consist of provider assessments and “checklists,” as well as the implementation of these tools in pediatric transplant programs.7
In recent years, there has been tremendous growth in the development of digital technologies such as mobile and desktop applications and social media, with the potential to improve the management of long-term conditions.9 In this context, the Johns Hopkins University School of Medicine organized and provided financial support for 2 multistakeholder symposia on February 2, 2018, and January 11, 2019 titled “Digital Wings: Innovations in Transplant Readiness for Adolescent and Young Adult Transplant Recipients.” International experts in the area of adult/pediatric transplant medicine, patient advocacy, and technology were invited to participate with the goal of characterizing the problem of poor transition readiness, identifying its root causes, and proposing novel digital solutions. In between these 2 conferences, AYA SOT recipients were surveyed to assess the challenges they experience, how they currently use health-related technology to manage these challenges, and how receptive they would be to an additional digital tool.
Each symposium was attended by individuals (n = 49 for first symposium and n = 47 for second symposium) with expertise in the following areas: (1) transplant medicine, including physicians and program coordinators; (2) mental health, including psychologists, social workers, and child life experts; (3) pharmacology; (4) patient/family perspectives, including young adult transplant recipients and parents; (5) advocacy, including leaders in professional societies and nonprofit organizations; and (6) technology, including experts with a background in medication adherence, social media, gaming, and augmented reality.
The objectives of the symposia were as follows: (1) to identify and discuss the barriers to and facilitators of effective transfer of care for AYA SOT recipients; (2) to actively explore strategies and digital solutions to promote the successful transfer of care; and (3) to develop meaningful partnerships for the successful development, evaluation, implementation, and dissemination of these digital solutions.
- AYA SOT recipients are at increased risk of graft failure and death, which can be largely attributed to nonadherence and inadequate transition readiness.
- Multistakeholder input is necessary to understand the barriers in the successful transfer from pediatric to adult care and to develop innovative solutions to this problem.
- Digital tools have been shown to improve outcomes and change behavior for several chronic medical conditions and would likely improve outcomes for our patients.
- Digital tools that build and strengthen connections between patients, as well as the connectivity between patients and healthcare providers, may further promote transition readiness. However, it is unlikely that a concept of “one size fits all” will work.
SCOPE OF PROBLEM
AYA participants described several challenges as SOT recipients, even as they were likely to be among the most motivated and organized patients: (1) Recipients reported being overwhelmed and worried about what was expected from them while managing their health needs. Medication adherence was, at a minimum, understood to be extremely important, with small missteps leading to serious complications such as rejection. Medication side effects were understood to be substantial, and this awareness contributed to fear and anxiety. (2) They reported that the transplant may negatively impact their ability to participate in routine activities, such as school and work activities, socializing with friends, and dating. (3) Body changes, including weight gain, alopecia, and scars, can make adjustment to post-transplant life even harder. (4) Surgery can lead to fatigue, isolation, and survival guilt.
Notably, AYA SOT recipients have approximately twice the rate of graft failure as individuals on either side of this age range. Rejection occurs in as many as 50% of graft failure cases, with nonadherence being a major contributor. Mental well-being can also explain some of these findings given higher rates of depression.10 Thus, targeted approaches to improve the mental well-being of these patients might improve long-term graft outcomes.
PROMOTING TRANSITION READINESS
Several speakers reviewed recommendations from a consensus conference organized by the AST/ASTS over a decade ago.8 Milestones denoting successful transition for AYA included the following: (1) an understanding of the original cause of organ failure and subsequent need for transplantation; (2) awareness of long- and short-term implications of transplantation on overall health and quality of life; (3) comprehension of the impact of illness/transplant on reproductive health and sexuality; (4) demonstration of responsibility for own health; (5) capacity to provide most self-care independently; (6) expressed readiness to move into adulthood; and (7) ownership of medical information in a concise portable health summary. Barriers toward achieving these milestones exist at multiple levels (ie, patient, caregiver, physician, and healthcare system). A developmental model that described the challenges and anticipated progress in achieving these milestones from early adolescence to young adulthood was shared.11 Over time the child should demonstrate increasing understanding and responsibility, while the caregiver simultaneously decreases supervision.11 “Allocation of responsibility” is a concept in which specific tasks are explicitly allocated to patients and caregivers, either as independent tasks or as joint/shared responsibilities.12 This model further divides tasks into communication tasks that involve interacting with other components of the healthcare system, such as physicians and pharmacies, and self-management tasks that include items such as taking medications. Transition across both domains of responsibility needs to gradually proceed from caregiver-initiated all of the time to joint responsibility to patient-initiated all of the time. In addition, analysis of self-efficacy, in which patients and caregivers define their degree of confidence in the patient’s skills to independently manage all the components, may help to assess these skills, set goals, and find areas that need improvement before the patient proceeds with further independence.
To improve transition and transfer, healthcare teams need to assess the individual’s readiness for transition, including knowledge of their long-term condition, self-care skills, and functioning.8 Several transition readiness toolkits exist to facilitate this process.13-16 However, it is unclear whether implementation of these tools, which primarily seek to measure knowledge, skills, and psychosocial functioning, is sufficient for promoting meaningful clinical change and successful transfer. For example, these tools may enhance attendance to a new adult clinic and may have transient benefits to medication adherence, but it remains to be seen whether they lead to lower rates of graft failure and death.
Effective communication with AYA SOT recipients was felt to be critical to help them acquire the necessary knowledge and skills to manage their condition. AYA SOT recipients may not be interested in receiving paper handouts or participating in educational groups as a source of education.17,18 Not surprisingly, this population seems more receptive to digital forms of communication. Text messaging was preferred over talking on a landline or cellphone and over 95% of all AYAs report using smartphones.19 Speakers discussed that multiple platforms are increasingly used by the AYA population, with the top 3 platforms being YouTube (85%), Instagram (72%), and Snapchat (69%). Research suggests that AYAs prefer to have technology incorporated into their education, with nearly two-thirds preferring YouTube as the education medium, and more than half saying that it has contributed to their education.20 Platforms such as Osmosis and the Kahn Academy that incorporate the scalability of YouTube with greater understanding of educational theory to promote learning and retention were presented as potential tools to promote knowledge.
Patients, parents, and providers may define a successful transition differently, but consensus exists that a successful transfer is one where (1) the patient is not lost to follow-up; the initial visit with the adult specialist occurs promptly after their last pediatric visit and proceeds at appropriate intervals; (2) mutual trust exists between patient and provider; (3) there is evidence of self-management; (4) patient and parent are satisfied with the care; and (5) the patient’s health is stable or improving. Some of these processes—medication adherence and patient engagement—and their associated outcomes may be more easily intervenable, and trackable, by a digital tool than other components of a successful transition.
SOLUTIONS, PRESENT AND FUTURE
Multiple speakers referred to the transition toolkit, which has been most recently revised at the American Transplant Congress meeting in Chicago in May, 2017. It was acknowledged that there is a need to update this approach from traditional pencil-and-paper to new tool(s) promoting transition readiness consistent with the ways young adults currently communicate.
Approximately 70% of people in the United States use Facebook and 25% to 30% use other platforms.21 Studies have identified several benefits to participate in online communities, which may help in obtaining social support, increasing knowledge, reducing anxiety, and increasing advocacy and self-empowerment skills.22 These platforms have also been used to implement interventions for other clinical settings, such as weight loss and sexual health.23,24 The effect size of social media interventions may be modest and is likely directly related to patient engagement, as many individuals are uncomfortable with participation, mistrust these settings, and express concerns about privacy. As an alternative to these ubiquitous social media platforms, disease-specific social platforms, such as the CF Peer-to-peer network, or broader health platforms such as Inspire and People Like Me, may provide opportunities for our population to identify other individuals to gain emotional support and health management skills.
The value for mobile and desktop applications to promote health in general, and medication adherence specifically, is increasingly well-understood and was highlighted throughout the symposium. At the same time, several speakers noted that the same type of messaging does not typically work for all patients.18 Tailored messages designed to provide “nudges” only to those who are not completing prescribed tasks (ie, not taking medications consistently or not adhering to a dietary intervention) may therefore better achieve optimal behaviors. Use of leaderboards and financial incentives have also been successfully incorporated into apps that try to promote adherence or change behavior.
Gamification was also identified as a digital health strategy to promote behavior change and may have applications to our population. Successful gamification incorporates 5 basic elements of human psychology to make the activity compelling.25 The elements of this include the following: (1) agency—creating meaningful choices that must be made, (2) challenge—providing a real conflict that needs to be resolved, (3) uncertainty—ensuring outcomes are not preordained, (4) discoverability—letting the rules be mastered, and (5) outcomes—seeing value in the endpoint. Early applications for gamification technology have been applied to patient education and behavior change (ie, promoting exercise).
During the first symposium, stakeholders were placed in groups where they partnered to address the following questions: How can we use digital tools to promote community? How can we use digital tools to promote education? What are ways that we could use a digital tool to promote and measure drug adherence? How do we measure a successful transfer and how would this be implemented into a digital tool? And how can we promote durable use of a digital tool? Although each group was assigned a specific question, several themes emerged among the multiple groups.
- Peer Mentoring: There is substantial need for, and potential benefit from, AYAs knowing other individuals with similar experiences. Identifying peer mentors might allow individuals to both connect to other individuals and benefit from their experience.
- Individual Tailoring: A successful digital tool cannot be “one size fits all.” People have different preferences in terms of modalities for connection such as texting or video chatting. Variability also exists in the pace of engagement, such as the frequency of prompts and notifications. Thus, digital tools should be personalized and tailored to the individual needs of the user.
- Embedded Education: Education can be incorporated into a digital tool (eg, videos and text messages) but should be appropriate to the individual’s cognitive and developmental level and their phase of transplant care and be specific to their organ.
- Patient Activation: Both the general process of transitioning to adult care and the specific need for medication adherence will be improved by a digital tool that promotes patient activation and ownership over their condition.
An IRB-approved survey of health-related technology use was distributed over social media and completed by 152 transplant recipients between 13 and 30 years, with a median age of 23 years (interquartile range 18 to 27), and included 46% liver, 24% heart, 22% kidney, and 8% multiorgan transplant recipients. Recipients were most likely to agree to consider using an app (82%) compared to social media (64%) or a game (30%) to help manage their transplant. Although nearly half used reminders several times per week, 40% had never used any reminders despite the broad interest in using an app for this function for various tasks such as taking medications (77% interested), getting refills (83%), making appointments (81%), and attending appointments (76%) (Table 1). There was broad interest in an app to connect with others (83%), track labs (80%), and obtain health education (80%).
EXIT SURVEY AND NEXT STEPS
The survey was completed by 42 (98%) stakeholders after the second symposium. Two-thirds of individuals felt that a digital tool could be applied to transplant recipients of any organ. Participants were asked to rank the priority for different functions of a digital tool, with medication adherence being ranked first by 75% and second by 10%. Medication refills and appointment reminders was the second most prioritized function (3% first choice, 38% second choice, and 25% third choice). Stakeholders were asked to comment on features of an app (“agree,” “neutral,” or “disagree”) and the most important features included the following: 2-way messaging with coordinator (95%), motivational text messages (93%), and a parent dashboard (80%). Although improving outcomes in AYAs with any chronic disease can be especially challenging, the framework developed throughout these collaborative symposia with guidance by adolescents and young adults has tremendous potential in advancing care for this population.
This symposium was funded through an Innovation Award from the Johns Hopkins Children’s Center. The authors acknowledge Naureen Islam and Kim Kafka, study coordinators for the Pediatric Liver Center at Johns Hopkins University, for facilitating the evaluation of the Digital Wings Symposium. Dr. Mogul is supported by grant number 5K08HS023876-02 from the Agency for Healthcare Research and Quality. Dr. Henderson is supported by grant number K01DK114388 from the National Institute of Diabetes and Digestive and Kidney Diseases.
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