Transitioning from Pediatric to Adult Diabetes Care

Transitioning from Pediatric to Adult Diabetes Care

  • Nicole Johnson, DrPH, MPH, MA - University of South Florida,
  • Stephanie T. Melton, PhD, MPH, MA - University of South Florida,
  • Ashley N. Wingert, MPH, CPH - University of South Florida

Abstract

Objective:
The clinical transition from pediatric to adult diabetes care is often challenging for both young adults with type 1 diabetes (T1D) and the health care providers (HCPs) who care for this population. This study presents insights into the perceptions and needs of both patients with diabetes and HCPs during the clinical transition.

Research Design and Method:
Two separate surveys were administered with questions specifically tailored to each audience. Perceptions of the transition phase for both patients with T1D and HCPs were analyzed for general trends and then compared to investigate similarities and differences between patient and provider needs.

Results:
Both patients and HCPs expressed concerns regarding poor patient-provider communication during transition and the barriers to independently managing diabetes self-care responsibilities (e.g. navigating insurance, ordering supplies, arranging healthcare appointments). Although 45% of HCPs reported screening transition age patients for mental health issues related to diabetes, only 9% of patients stated their provider offered this opportunity. Furthermore, patients reported facing a variety of challenges not discussed with their HCP including: sexual issues (28%), depression or anxiety (17%), and eating disorders (11%).

Conclusion:
Training in the assessment of young adult T1D needs and effective communication techniques may assist HCPs in working more effectively with young adults. Offering mental health screenings for transition age patients may open the conversation to discuss diabetes concerns such as depression, sexual challenges, and eating disorders not currently being addressed. Both patients and providers desired improved communication with more emphasis on independently managing diabetes responsibilities and adjusting to new life situations.

Background and Rationale

Gaining independence as a young adult is a challenging experience for anyone. The presence of a chronic condition such as type 1 diabetes (T1D) can exacerbate the complexities of this period of emerging adulthood by placing additional responsibilities on young adults as they adjust to a new environment and cope with new life situations [1]. Additionally, health care providers (HCPs) may face challenges assisting older adolescents and young adults transitioning from pediatric to adult clinical care due to gaps in patient healthcare utilization among emerging adults with diabetes.

Young adults transitioning to independence may face challenges in maintaining diabetes care plans, experience diabetes burnout and the stresses of taking on new life experiences in college or the workplace, while at the same time receiving less direct support from parents. Previous studies report several barriers that hinder optimal diabetes management during emerging adulthood, including difficulty finding health professionals with T1D expertise, diminished social networks and support, irregular schedules, the increased presence of drugs and alcohol, and financial struggles [1, 2]. These challenges often lead to a wane in diabetes management and self-care during the transition years of emerging adulthood.

In a qualitative study of young adults living with T1D, 71% reported that diabetes was more difficult to manage in college than in high school [1]. A similar study of urban youth with T1D conducted by Gee and colleagues found that challenges in establishing independence as a young adult were similar to those without a chronic condition, but coping with the management of diabetes magnified the difficulties of emerging adulthood and generally resulted in poor diabetes management [3].

Not only is young adulthood a period of personal transition from dependence to independence, it is also a clinical transition from pediatric to adult diabetes care. Unfortunately, studies report significant gaps in follow-up care and a decrease in physician visits after transferring from pediatric to adult care [4]. For instance, one study found 34% of patients reported a gap > 6 months between pediatric and adult diabetes care, resulting in greater risk for loss to follow-up care [5]. Other studies confirm a notable decrease in physician visits after transitioning to adult care and also report that fewer physician visits were associated with poor glycemic control [6, 7]. Research conducted by Nakhla and colleagues revealed patients with sporadic follow-up care had poorer glycemic control and higher rates of hospitalization compared to those with regular follow-up care [8].

It is important to note that a singular model for transitioning patients with diabetes from pediatric to adult care is not currently in place. Varying systems include transfer to an adult clinic or different hospital, transition to a combination of pediatric and adult care providers, and transfer to a young adult clinic within the same pediatric hospital [4]. Likewise, there is a wide-degree of variation in preparing patients for transitioning from pediatric to adult care with some patients receiving no information, some receiving specific adult provider or clinic recommendations, some having a specific visit to discuss transition, and others being prepared for adult diabetes care by having a pediatric diabetes visit without a parent/guardian in the room and discussing independent diabetes self-management with the pediatric provider [5]. In 2011, the American Diabetes Association (ADA) released recommendations for transition from pediatric to adult diabetes care systems, including preparing adolescents through a gradual shift to self-management (e.g. scheduling appointments and monitoring supplies); screening for complications, disordered eating behaviors and mental health issues; and having open discussion of the interplay between lifestyle behaviors (e.g. sex, alcohol, cigarettes, and drugs) and daily living with diabetes. The level of implementation has yet to be standardized in practice across the United States. Hence, the literature demonstrates that general recommendations for approaches to the diabetes clinical transition do exist, but as studies show, there is great variability in the quality of care young adults receive and the level of diabetes management they maintain.

This study presents insights into the perceptions and needs of both patients with diabetes and HCPs caring for this population. Research questions include: 1) How do patients perceive the quality of their diabetes care during the pediatric to adult transition? 2) What challenges are most problematic for young adults during transition? 3) What procedures do health professionals have in place to aid with adolescent transition? and 4) How do patient and health professional perceptions of diabetes care transition needs compare?

Research and Design Method

Survey data was collected from adults with T1D ages 18-50 and HCPs caring for adolescents and young adults with diabetes. The questions were based upon findings of a literature review and themes revealed from exploratory interviews conducted by the authors with 41 young adults with T1D ages 18-30. The result was two independent surveys with specific questions tailored to a young adult patient audience and a health care provider audience. For example, HCPs responded to questions such as: “Do you screen transition age patients for mental health issues related to diabetes?” and “From your experience, what are the most important needs during the diabetes transition?” Adults with T1D responded to: “What is/was the most dominant challenge for you in transition?” and “What could your provider do to help you more with your diabetes?”

Participants

Participants were recruited both online and in person at diabetes events. Study flyers were disseminated through online advertisements on social media websites such as Facebook and emailed to the membership lists of Bringing Science Home, American Association of Diabetes Educators, Juvenile Diabetes Research Foundation, and the American Diabetes Association. Participants recruited online were directed to a Survey Monkey site to complete the questionnaire, while participants recruited in person completed a paper version of the survey.

Participants self-selected to complete the anonymous survey. Eligibility requirements included being an adult living with T1D, at least 18 years of age, or a HCP caring for people with diabetes. Eligibility also included proficiency in English and access to a computer with an internet connection for those who chose to complete the online survey. A total of 224 participants met the eligibility requirements (adult T1Ds = 170, HCPs = 54) with a subset of willing participants (n = 30) excluded due to missing (n = 12) or incomplete data (n = 18). For the purposes of this study, missing data pertained to individuals who accessed the survey, but failed to complete the survey items, whereas incomplete data referred to participants who only partially answered each question item (e.g. filled-in only part of the ranked answer-items).

Research procedures were approved by the University of South Florida Institutional Review Board. Informed consent was obtained from participants. No incentives were provided.

Data Analysis

Perceptions of the transition phase for both adults with T1D and HCPs were analyzed for general trends using descriptive statistics. Results from independent analysis of the two data sets were then compared to investigate trends in differences of perception and reported needs between patients and HCPs. All statistical analyses were performed using SPSS (IBM Corp., v. 22).

Results

Health care professionals offered their perceptions on the diabetes clinical transition by responding to a variety of questions. HCPs (n = 54) who participated in the study were predominantly female (87%). The HCPs who responded to the survey included: MDs (13%), nurses (48%), and registered dieticians (17%). Nearly half of participants were also certified diabetes educators (CDE) (48%).

Participants with diabetes (n = 170) were predominantly female (85%) with a mean age of 28.9 (SD = 11.42). The mean age of participants at diagnosis was 10.8 (SD = 5.55). The majority of participants (56%) had a college degree or higher and were currently covered for healthcare through an employer sponsored plan (43%) or parent’s insurance (34%). Similar to providers, patients with diabetes shared their perceptions of the clinical transition by responding to questions about their experience.

Provider Approaches to Aid with Transition

The majority of HCPs determined a patient’s readiness for transition largely based on maturity (43%), followed by interest level in transitioning (28%), and age (26%). Providers felt the most difficult challenges as a HCP during transition were: communicating effectively with youth (34%), evaluating family dynamics (28%), assessing the needs of youth quickly (22%), and anticipating the developmental needs of youth (18%). Interestingly, less than half of providers (45%) screened transition age patients for mental health issues related to diabetes, and only 6% offered shared office visits between pediatric and adult care providers during transition.

Concern for patient well-being during the clinical transition was reported by every health care provider who participated in the sample. As one provider stated, “[My biggest fear for patients is] that the transition will be a set-back rather than a positive transition.” HCPs noted patient difficulty in following diabetes management plans on their own (33%), maintaining motivation (27%), gaining independence from parents (20%), understanding insurance and diabetes policy (16%), and timeliness making diabetes appointments and ordering diabetes supplies (8%). Patient success during the diabetes transition is believed by providers to be based upon individual skills with diabetes management responsibilities (e.g. navigating insurance, ordering supplies, and arranging healthcare appointments) (53%), and exerting independence as a young adult (32%).

Patient Perspectives

Most young adult T1D patients described the clinical transition as “Fair,” if not “Poor,” with the greatest challenges being the learning of diabetes management responsibilities (65%), followed by independently managing diabetes (55%), social issues (e.g. relationships or living with diabetes in public) (44%), and knowing how to communicate about diabetes with others (40%). Many reported that connecting with a social diabetes group in their local area would be the most beneficial resource during the transition years, along with education on how to manage insurance policies.

During analysis, the patient sample was divided into three separate age brackets to account for possible differences in clinical practice that may have occurred over time regarding transition age patients: 18-28 year-olds (n = 113), 29-38 year-olds (n = 23), and 39-50 year-olds (n = 34). Interestingly, respondents in the younger age brackets reported a more negative transition experience, with 60% of each group describing the experience as either poor or fair, while only 36% of those aged 39-50 described the clinical transition as such. Similarly, those aged 18-28 and 29-38 felt the most beneficial resource during the transition years would be a social group (40% / 41%) followed by an insurance/diabetes policy resource (28% / 29%). Patients aged 39-50 felt an insurance/diabetes policy resource would have been more beneficial (46%), followed by inclusion in a social diabetes group (29%). All three age groups overwhelming reported lifestyle management help (e.g. information about real life situations and diabetes) as the greatest need from diabetes care visits during the young adult years. Likewise, independently managing diabetes was reported by all three groups as one of the greatest challenges during transition. Those aged 18-28 and 39-50 also expressed challenges with learning the business of diabetes (e.g. ordering supplies, insurance, etc.), while those aged 29-38 expressed greater concern with knowing how to communicate about diabetes with others during the transition stage.

As a whole, only 9% of patients believed their provider offered the opportunity to participate in mental health screenings, but many reported experiencing mental health and social challenges around diabetes not discussed with their HCP. For instance, patients reported experiencing depression or anxiety (32%), workplace challenges (14%), eating disorders (12%), sexual issues (12%), academic challenges (12%), and expressed other concerns about diabetes not discussed with their HCP (12%).

In addition to reporting on the diabetes challenges as a young adult, patients provided information on what they felt would improve the transition experience. Better insurance coverage (35%), more technology (31%), help with emotional challenges of diabetes (21%), social connection with other people with diabetes (8%), and a better medical care team (8%) were ranked in order of easing life with diabetes. Patients shared ways providers could do more to help with their diabetes, such as offering ways to be involved in diabetes research (42%), keeping the patient up to date regarding diabetes drugs and technologies (41%), being unafraid to recommend trying something new in medical care (e.g. modifying insulin ratios or prescribing new medications) (37%), and connecting patients to others living with diabetes in their local community (32%).

Differences of Patient and Health Care Provider Needs and Perspectives

Both patients and HCPs expressed concerns regarding poor patient-provider communication during transition and the barriers to diabetes management responsibilities. Furthermore, every provider expressed loss to follow-up as their greatest fear for patients, and 45% of patients desired greater access to their HCP and better communication.

While 45% of HCPs reported screening transition age patients for mental health issues related to diabetes, only 9% of patients stated their provider offered the opportunity to participate in mental health screenings. Although the patient and provider samples are not linked, this finding suggests that a disconnect may account for the number of diabetes concerns patients did not discuss with their provider such as depression and eating disorders.

Discussion

HCPs and patients both indicated that transitioning from pediatric to adult diabetes care was an enormous struggle, with the majority of patients describing their experience as “Fair,” if not “Poor.” Providers struggle with preparing their patients for independence and determining how to best communicate with patients who are moving through developmental stages. Patients struggle with taking on management behaviors and feeling they are being heard by their providers. Providers reported a patient’s level of maturity as the primary basis for transition and felt mastery of self-care behaviors was the most significant factor during the diabetes transition. This inclination is supported by Garvey and colleagues [5] who found individual patients’ self-care proficiency more relevant to health outcomes than chronological age at the time of transition [5]. In our study, providers and patients agreed that learning how to manage insurance policies and the financial costs of diabetes in order to independently maintain self-care were the greatest challenges. This notion reinforces research conducted by Rasmussen and colleagues [2] who found that for young adults with T1D, moving away from home and separating from parental support caused concerns related to finding health professionals with diabetes expertise, diminished social support, and access to diabetes supplies. However, as young adults gained knowledge and skills, their self-perception improved and enhanced their confidence in managing their diabetes [2]. Therefore, practical skill-building activities such as interacting with the medical team without parents present, monitoring supplies, refilling prescriptions, and making medical appointments are important for moving from basic diabetes self-care to independent self-management [9].

In addition to skill-building, both sides of the patient-provider relationship want improved communication. Patients have a desire for increased access to providers and more lifestyle management support (information about real life situations and diabetes). Previous research demonstrates that young adults and HCPs face barriers and struggle to communicate effectively. One study found that participants felt the care they received was not relevant to young adult lifestyles and that the practitioners’ consultation style needed to shift with age [10]. However, research also indicates that acknowledging the unique challenges faced during the transition period and preparing ahead of the transition can improve health outcomes [9, 11]. Given the uncertainty associated with taking on a new independent role, patients desired more “real-life” lifestyle management help that reflect their less structured lifestyles as students and employees, and open communication with their HCP to discuss challenging topics. Participants in the current study also wanted providers to inform them of ways to become involved in research, updates on diabetes drugs and technologies, recommendations for new treatments in medical care, and social connection to others with diabetes. These expressed needs correlate with findings from previous research [2].

Findings from this study highlight the need for implementing and evaluating standardized care for the clinical transition from pediatric to adult diabetes care. As the ADA suggests, greater emphasis needs to be made developing skills for independently managing diabetes, providing lifestyle management help (e.g. information about real life situations and diabetes), and screening for mental health issues.

Strengths and Limitations

This study should be considered in context of certain limitations. While the survey allowed for geographic diversity, participants may not be representative of the overall population of young adults living with diabetes nor the providers who care for them. The sample size for both patients and providers were small, limiting the generalizability to the larger populations. The majority of HCP respondents were nurses or CDEs, with only 13% of respondents being MDs. Understanding the perspectives of nurses and CDEs who care for young adults with diabetes is valuable, but future studies should consider gathering responses from MDs whose experiences and perspectives of the diabetes clinical transition may differ from those of nurses and CDEs. Similarly, the significant variation in patients’ age, 18-50, may impact data analysis as clinical transition practices have certainly changed over time.

Additionally, the patient and provider samples in this study were not linked; the patient respondents were not those seen by the HCP respondents. While this does not threaten the validity of the study, it does limit the ability to make definitive interpretation of some findings. As with all surveyed responses, there is the possibility of socially desirable responding, though data were collected anonymously to address this issue. Similarly, patient perceptions of the transition experience may be subject to recall bias. Tailoring the surveys to the two audiences allowed for a more thorough examination of the needs and perspectives of each population, but limited comparisons of survey responses to general themes.

Future studies should examine communication barriers between patients and providers during the diabetes transition using a larger, more representative sample. Longitudinal and evaluation studies may help to determine effective methods for improving care of young adults living with diabetes.

Conclusion

Given the uncertainty associated with taking on a new independent role, young adult patients desire more lifestyle management help, open communication with their HCP, and opportunities to connect with peers who also have diabetes. Providers are quick to acknowledge difficulty communicating effectively with youth, which may account for the number of diabetes concerns patients did not discuss with their provider, such as depression and eating disorders. Overall, independently managing diabetes and adjusting to new life situations that arise throughout young adulthood are areas where patients need guidance. Providing greater emphasis on lifestyle management help may improve patient-provider communication, and in-turn, diabetes management and health outcomes.

Future Directions

Results of this study highlight two significant findings. First, there is need for improvement in communication between providers and young adult patients with diabetes throughout the clinical transition. Patients noted several areas of concern that they do not address with their provider, while health care providers expressed difficulty in quickly assessing the needs of young adults and communicating with this population effectively. With this in mind, providing training in these areas may assist HCPs in improving these communication skills and working more effectively with young adult patients. Second, mental health screening tools appear to be underutilized during such a critical phase of life when changes in support, finances, and environment are all occurring at once. Offering mental health screenings for transition age patients may open the conversation to discuss diabetes concerns such as depression, sexual challenges, and eating disorders.

Acknowledgements

This research is funded by The Patterson Foundation.

Conflict of Interest Disclosures

The authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. The authors report no potential conflict of interests relevant to this article. 

Biography

L. Nicole Johnson, DrPH, MPH, MA, University of South Florida College of Public Health, Tampa FL 33612, njohnso3@health.usf.edu.

Stephanie T. Melton, PhD, MPH, MA, University of South Florida College of Public Health, Tampa FL 33612, smelton@health.usf.edu.

Ashley N. Wingert, MPH, CPH University of South Florida College of Public Health, Tampa FL 33612, awingert@health.usf.edu

DOI: http://dx.doi.org/10.17125/plaid.2016.66

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