Slide 1

The Special Interest Group in Health Care Transition (SIG-HCT) focuses on adolescents and young adults who suffer from chronic conditions and are entering adulthood. Comprised of patients, their parents and families, and dedicated health-care professionals, the SIG-HCT addresses the emotional, physical, and psychosocial changes that adolescents face as they transition their healthcare into the adult world.

In its inaugural year, the 2011 abstract competition for the Special Interest Group in Health Care Transition received 14 interesting abstracts submitted from 9 states across the nation. Each abstract highlights the important challenges facing SIG-HCT members and innovative strategies to improve transition.  All 14 abstracts are presented here.

Nephrology On-Demand and the SIG-HCT salute the abstract authors with this post. Use your keyboard's arrow keys to scroll between the abstracts.

Congratulations and keep up this great and necessary effort.

The Special Interest Group of Health Care Transition and

Nephrology On-Demand


National Transition Center

Practice Learning Collaborative utilizing the Six Core Elements for Health Care Transition Improvement

White, Patience, MD; Rogers, Katherine, MPH: McManus Peggy, MHS; MacAllister, Jeanne, BSN, MS, MHA; Cooley Carl, MD

Correspondence: Patience White,

Transition for youth with special health care needs from pediatric to adult health care remains a challenge. The timing is right to assist practices to improve their health care transition processes in partnership with youth and families. Got Transition? Is the federally funded National Health Care Transition Center and has the collective knowledge, tools and supports to facilitate the use of quality improvement and collaborative learning methods in 3 regions helping practices to improve health care transition for youth and their families. The Learning collaboratives are using a new clinical report that provides explicit practice-level guidance (and is jointly endorsed by the AAP, ACP and AAFP). The six core elements for health care transition and the Health Care Transition Indices for both pediatric and adult practices (developed and reviewed by the national Got Transition? Advisory group) bring the clinical report to life, making it operational. The first of these three national learning collaboratives has been formed in Washington DC with pediatric, family medicine and internal medicine teams that includes physicians, residents, nurses, social workers and youth and family partners. The six core elements of transition, the transition indices and the baseline results of the Washington practices and the lessons learned from the first of three Washington DC learning collaboratives in will be discussed.


Slide 3

USC Keck School of Medicine

Development of a Health Care Transition Model

Betz, Cecily, PhD; Ferris, Maria MD, MPH, PhD; Wood, MD, MPH; Scal, Peter, MD; Sawicki Greg, MD, MPH; Jan, Sophia, MD; Woodward, Jason, MD

Correspondence: Cecily Betz,

Health care transition research is in the seminal stages of development. A limitation of the studies published has been the lack of theoretical frameworks to guide research development. Efforts to stimulate the development of research efforts will be facilitated with the development of health care transition models that help to explain the variables of interest for testing. Up to now, health care transition planning (HCTP) has been described as a compendium of provider- oriented activities and outcomes that include the development of an individualized and asset-oriented transition plan beginning at age 14; parental support to cope with the adolescent’s role changes; transfer processing between pediatric and adult providers; an identified service coordinator; self-management training and referrals to transition and adult services. Understanding the importance of model development to the advancement of the science, members of the transition research consortium volunteered to undertake this effort. The members of the transition research consortium worked on the development of a health transition model to: a) describe the phenomenon of HCTP explicating it as a temporal sequence of events from initiation to conclusion; b) provide a framework to better understand the process for the purposes of research testing and clinical practice; and c) to advance the theoretical understanding of the HCTP process that is a necessary precursor to knowledge development. The transition research consortium work group will present the model that delineates variables of interest and the process of HCTP that is instrumental in supporting adolescents with special health care needs and disabilities, the factors that mediate the process and the anticipated outcomes of HCTP of developmental competences that mark the entrance into the adult state of development and entry into the adult world of service.


Slide 4

National Kidney Foundation of Michigan

Assessing the Information needs of adolescents with chronic kidney disease: A qualitative Investigation

Erica E. Perry, MSW, Kai Zheng, PhD, Maria Ferris, MD, MPH, PhD, Leticia Torres, Kristi Bickford, BA and Jonathan H. Segal, MD


Correspondence: Erica Perry,

Adolescents with chronic kidney disease (CKD) are more likely to be isolated from peers, develop non-adherent behavior with treatment recommendations, and are, consequently at higher risk for poor outcomes such as transplant rejection. In the meantime, patients in this age group tend to be more technologically savvy and more versed in using internet-based communication tools to connect with other people. In this study, we conducted semi-structured interviews among adolescents with CKD to assess their information needs and their interest in using a CKD-oriented peering mentoring website that we are developing,

We interviewed ten adolescents with CKD stage ≥4 , ages 14–18 years old, to learn about a) any concerns regarding transitioning from pediatric to adult care teams; b) their interest in using the internet as a source for disease-related information and as a social networking tool for finding and interacting with their peers. The interviews were digitally recorded, transcribed, and qualitatively analyzed.

Results showed that (1) these adolescents are commonly concerned about transitioning to adult dialysis units; (2) they are, in fact, isolated from peers of the same or similar age; (3) despite a strong interest, very few of them are aware of any CKD-related websites; and (4) they are frequent Facebook users, and are unanimously interested in exploring the possibility of using to communicate with peers and peer mentors.

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Indiana University School of Medicine

Development of the Indiana University Center for Youth and Adults with Conditions of Childhood: A Disease Non-Specific Transition Support Program

Correspondence: Mary Ciccarelli,

Background: An identified need was noted by a working group of Riley Hospital for Children providers and local parent-to-parent network staff regarding the difficulties encountered in Indiana by youth with special health care needs (YSHCN) in their transition into adult healthcare.

Objective: To describe the formation of a transition program whose goals are to improve access to eligible and needed transition-related services, satisfaction with transition and ultimately health outcomes for youth and young adults with special health care needs.

Method: Using the following template for program development, a transition support program was developed: 1) Identify transition needs: user population, key dimensions of transition, stakeholders, 2) Develop missions/values, 3) Develop business plan/funding methods, 4) Plan and develop service delivery model, 5) Construct team, advisory group, collaborations, 6) Revise service delivery using process improvement methods, and, 7) Collect data and perform ongoing evaluations.

Results: 1) Inquiries around transition began within the Dyson Community Pediatric Training Initiative grant in 2003, leading to a formal needs assessment and pilot. Semi-structured interviews were conducted with parents and young adults at independent living centers and with university adult and pediatric subspecialists. 2) A two day facilitated retreat with a broad range of potential stakeholders was hosted to develop missions and values and pilot suggestions. 3) Clinical revenue alone would not support the planned scope of work, so funding was secured primarily via biannual grants from Indiana Maternal Child Health Bureau with matching funds from the Department of Pediatrics, the primary care practice plan and Wishard Health Services, the county hospital. 4) The Center for Youth and Adults with Conditions of Childhood (CYACC) launched clinical care in 2006, providing consultation and care coordination to YSHCN ages 11 to 22 across the range of diagnoses. The transdisciplinary transition support team includes nurses, social workers, and medicine-pediatrics and pediatric rehab physicians. Seven of the ten team members are family members of or themselves consumers of special health care services. As the panel of youth served has grown, the team now provides clinical visits 2 days per week and care coordination on other days. Intake includes a two-hour consultative visit and care coordination limited to the following three months. Annual subsequent visits and care coordination cycles are offered to participants. Portable medical summaries and transition plans are created at intake and updated annually. Primary care provider (PCP) support was initially provided through a mailed copy of the assessment, and evolved to now include options of a brief doctor-to-doctor in-person visit, phone call or email along with mailed PCP one-page summaries on prominent topics. Graduation from the program is currently youth driven. 5) The advisory board meets quarterly with collaborations within the institution and with over twenty organizations. The youth sub-board provides regular feedback to program initiatives and revisions. 6) Quality improvement team meetings address processes in clinic activities, care coordination, documentation and communication, resource collection, education and research. Within community pediatrics, pediatric rehab, and transition elective rotations, residents and medical students participate in clinical care and service learning projects. 7) Family satisfaction surveys are mailed to those seen in the prior month, with highly positive results. Research projects include a

mailed annual outcome survey which aims to measure program impact over multiple year data collection, and a logging system of team activity and lessons learned.

Conclusion: The development and evolution of a transition program require sustained attention to identified needs, mission, funding, functionality of the service delivery model and collaborations with key stakeholders, including youth and parents. As transition is a longitudinal process, likewise, proof of efficacy through outcome measurement will require longitudinal evaluation. Involvement of stakeholders and advisory groups are valuable in promoting new collaborations, funding sources and ongoing service delivery improvements.


Slide 6

Indiana University School of Medicine

Informed consent and assent issues in a study to evaluate a transition support program

Woodward, Jason, MD; Swigonski, Nancy, MD, MPH; Ciccarelli, Mary, MD

Correspondence: Jason Woodward,

Background: With the emphasis on the need for improved transition services for youth with chronic conditions and disability, more research is needed to identify optimal methods to promote the successful transition from pediatric to adult-oriented health care. As researchers enroll youth in studies designed to evaluate the effectiveness of transition services , they need to be prepared to address ethical, legal, and practical challenges in the informed consent and assent process particular to this population of youth and young adults.

Methods: Our Center is a transition support program for youth and young adults with special health care needs (YSHCN) between ages 11 to 22. We are currently conducting a longitudinal study involving the creation of a patient database of youth attending the clinic through annual data collection from participating youth and their families. From a review of relevant literature and published regulations and clinical experience enrolling study participants, we identified issues in the informed consent and assent process important for researchers evaluating methods to improve health care transition.

Results/Recommendations: To date, we have enrolled 390 patients into our study, with consent obtained from 96 youth and 294 parents or caregivers, and assent obtained from 233 youth. From this experience and a review of 30 relevant articles, we defined the key concepts in transition-age research participants to include: 1) assent of children and adolescents with chronic conditions; 2) parental permission (or consent) for children with chronic conditions; 3) assessment of decision-making capacity in young adults with cognitive impairment; 4) proxy consent by a legally authorized representative for a young adult without decision-making capacity; and 5) assent in the young adult without capacity for consent.

Our experience working with these concepts leads us to the following recommendations regarding youth in transition: 1) The assent process provides an opportunity to empower a youth’s autonomy and decision-making skills, and efforts should be made to obtain assent from all youth whenever possible. 2) Parental permission should be provided by the person who both knows the youth best and who is able to make decisions in the best interest of the youth. In some situations, this would require permission be obtained from both the legal decision maker and the regular caregiver. 3) As decision-making capacity is context dependent, it is impacted by a combination of factors, including level of risk, experience, and understanding of particular concepts, and should not be based solely on diagnosis or intellectual quotient. We recommend each potential participant be assessed for their decision-making capacity and ability to provide informed consent as it relates to the particular study. 4) The determination of a legally authorized representative to provide proxy consent for young adults without decision-making capacity requires familiarity with state and local legal codes and definitions. 5) Because individuals should be given the opportunity, to the extent they are able, to decide whether or not to participate in research, adults determined to be without decision-making capacity should be encouraged, if able, to participate in the assent process.


In studies evaluating models of transition care for youth with chronic conditions and disabilities, attention to particular concepts in the informed consent and assent process will enable researchers to promote autonomy and decision-making skills in participants while protecting this vulnerable population from risks of research.










Slide 7

Division of Transition of Care, Nemours/AI duPont Hospital for Children, Wilmington, DE, USA

Transition of Care Consultation Service for Young Adults with Special Health Care Needs

Rita S. Meek, MD, MSOD, Cory E. Nourie, MSS, MLSP

Correspondence: Rita Meek,

Background: Various disease-specific transition programs exist for young adults with special health care needs (YASHCN). No studies have reported on the implementation of transition programs for all YASHCN, irrespective of the patient’s primary diagnosis.

Objective: To describe a consultation service assisting any YASHCN, their family, and their health care providers in the development of medical and non-medical transition plans

Design/Methods: In 2010, a Transition of Care consultation service staffed by a pediatrician and social worker was initiated at an academic tertiary care children’s hospital with 90,000 unique patients. The program provides guidance and assistance to any YASHCN, their parents, and/or health care providers in the creation of transition plans addressing chronic medical conditions as well as non-medical issues. Additionally, the team provides anticipatory guidance regarding differences and similarities between pediatric and adult health care systems.

Data was collected from Transition of Care inpatient and ambulatory consultations. We analyzed: age and primary diagnosis of patients at referral; source of referral; number and disciplines of involved specialists; patient’s cognitive, communication and ambulatory skills; utilization of ongoing technical support; guardianship issues, residential placement, community supports, financial concerns, and vocational and education plans.

Results: 110 patients were referred to Transition of Care Consultation service in the first eleven months. 73 patients/families were evaluated through formal inpatient or ambulatory consultation. 13 patients/families were interested in only telephone intervention and four patients/families were not interested in any contact with the transition team. 19 patients/families are in process.

Of the 73 patients seen by the transition team, the mean age of the patient at time of referral was 19.2 (range 16 – 21). Primary diagnoses included: Cerebral Palsy (62%), spinal cord injuries/spina bifida/neurogenic bladder or bowel (12%), genetic/chromosomal abnormalities (8%), and developmental disabilities/autism (8%). A mean of 4.3 specialties (range 1-8) were actively managing the patient and the ones most commonly utilized were Orthopedics (72%), Neurology (57%), GI (44%), and Pulmonology (28%). Patients had intellectual disabilities (57%), did not use words to communicate (58%); were primarily tube-fed (24%), used wheelchair (54%); and had/will need legal guardians (39%).

Most common transition of care issues identified were: difficulty in locating primary and specialty health care providers, lack of appropriate and available residential options, cost

of guardianship, lack of financial resources, limited home health care options, lack of self-management skills, resistance to leaving pediatric health care system .

The Transition of Care team assisted patients, families, and health care providers in the: identification of adult health care providers, the development of action plans and timelines to address medical and non-medical transition issues, and facilitated referrals to potential community supports.

Conclusion: YASHCN referred to a transition consultation service have complex, chronic medical issues and are very dependent on a multispecialty pediatric health care system. Additionally YASHCN have many non-medical issues which will also need to be addressed at the time of transition. A transition consultation service can assist providers, patients, and families in addressing these issues in an anticipatory fashion and work collaboratively to create more effective transition plans.

Slide 8

The University of North Carolina at Chapel Hill

Social Support for adolescents with chronic illness promotes self-esteem and quality of life

Laura Robinson-1, Gary R Maslow, MD-1, Kristin Wolbert-2, Peter Sim, MD-2, Kristi Bickford-1, Edwin Fisher, PhD-1 and Maria Ferris, MD, PhD, MPH-1

1-University of North Carolina, Chapel Hill, NC, United States

2-Victory Junction, Randleman, NC, United States.

Correspondence:  Laura Robinson,

Background: Adolescents with chronic illnesses are at risk of lower self-esteem and quality of life than their healthy peers. Various forms of social support contribute not only to disease management, but may improve self-esteem and quality of life (QoL).

Objective: To examine the relationship between social support from parents and from friends with self-esteem and QoL for adolescents with childhood-onset chronic illness.

Design/Methods: A web-based survey was conducted among 13-16 year old adolescents with several childhood-onset chronic medical conditions before arriving at Victory Junction Camp. Measures included the PedsQL and the Rosenberg Self-esteem scale. Participants also completed a survey about the social support they receive from parents and from friends. Support was divided into instrumental (concrete action) vs. emotional support and into directive (friends tell me what to do) vs. nondirective (friends let me decide what to do) support. Correlations between different forms of support and self-esteem and QoL were examined, followed by partial correlations examining each type of support controlling for the others.

Results: Overall response rate was 55% (N=135). The mean self-esteem score was high at 3.4 out of 4. Generally, correlations indicated significant positive relationships of social support with self-esteem and quality of life. As shown in the table below, nondirective emotional support from parents and both nondirective emotional and instrumental support from friends were significantly associated with both self-esteem and QoL.

Conclusions: Greater social support from friends and parents, particularly nondirective emotional support, is correlated with higher self-esteem and quality of life for adolescents with chronic illness. Peer-support programs, like camps, may improve quality of life.



Table 1 Correlation between type of social support and self-esteem and quality of life
Social Support Type Correlation to self-esteem Correlation to QoL
Friends Nondirective Emotional 0.27** 0.26**
Nondirective Instrumental 0.16 0.26**
Directive Emotional -0.09 0.00
Directive Instrumental -0.02 -0.10
Parents Nondirective Emotional 0.18* 0.27**
Nondirective Instrumental -0.02 0.09
Directive Emotional -0.10 -0.06
Directive Instrumental 0.02 -0.18*


Slide 9

Indiana University School of Medicine


Health Characteristics and Health Care Needs of Youth with Special Health Care Needs Attending a Transition Support Program

Jason Woodward

Correspondence: Jason Woodward,

Background: Medical transition programs for youth and young adults with special health care needs (YSHCN) have been developed to address gaps in health services and promote healthy adult life. The characteristics and health needs of youth seeking care from disease non-specific transition support programs have not been well described.

Objective: Describe health characteristics, health needs, and unmet and unrecognized service needs of youth attending a comprehensive, disease non-specific transition support program.

Methods: The Center for Youth and Adults with Conditions of Childhood (CYACC) provides transition support services for youth with chronic conditions ages 11 to 22. Surveys were mailed to 198 parents or caregivers of youth who had attended clinic. Survey domains were based on published guidelines for transition services, described barriers to transition, and clinical experience. Most questions were adapted from national health surveys and the survey was piloted with parents. Families were asked about the child’s health status, functional ability, and health care needs. Their need for 14 different services was assessed with the question: “Thinking about the last 12 months, for each of the following services, answer whether your child needed the service and whether your child got the service.” The clinical database provided demographic characteristics, primary diagnoses, and body mass index. Descriptive statistics were done to describe health and functional characteristics and unmet health needs, and results were compared to similar questions from national surveys.

Results: Forty-four percent of surveys were returned. Average age of youth was 17.5 years old (12-24) and 54% were male. Diagnoses included cerebral palsy (36%), spina bifida (10%), developmental delay or Down syndrome (17%), autism (6%), and 20 other chronic conditions. Respondents were generally similar to non-respondents, although slightly older (17.5 vs. 16.6). Most youth needed assistance with personal care (69%) and routine needs (91%), and 59% used assistive devices. A vast majority were attending school and living with their parents. The highest areas of need were dental care (95%), routine preventive care (93%), prescription medications (93%), and specialty care (78%). Parents reported higher needs than described in the NS-CSHCN for all services except mental health care and substance use counseling. Compared to results from the NS-CSHCN, youth had much higher levels of need for physical, occupational, or speech therapy (72% vs. 23%); medical supplies (70% vs. 19%); durable medical equipment (54% vs. 11%); and home health care (35% vs. 5%). Forty-three percent of youth had at least one unmet health need. Unmet needs were highest for advanced care planning (70%), exercise counseling (30%), mental health care (28%), and therapies (14%). Despite 42% of youth having an unhealthy weight, few parents recognized a need for counseling on physical activity (41%) or nutrition (34%). As recommended preventive care for all adolescents, parents under-reported a need for substance use counseling (1%) and sexual health screening (16%). Despite the complexity of the youth’s health conditions, few parents indicated a need for advance care planning (32%).

Conclusions: Youth attending a disease non-specific transition program have more complex health conditions, greater functional limitations, and similar or greater amounts of health service needs than those in the NS-CSHCN. Parents under-recognized the need for adolescent preventive health care services. Disease non-specific transition programs will need to be prepared to address the recognized and unrecognized health needs of a medically complex population of patients.

Slide 10

Department of Pediatric Gastroenterology, Nutrition, and Liver Diseases, Hasbro Children’s Hospital, Providence, RI

Adolescents with IBD: Characteristics of Transition in Care in Rhode Island

Karlik J, Machan JT, Bancroft B, Suorza K, Lidofksy S, Shah S, Feller E, LeLeiko N

Correspondence: Joelle Karlik,

BACKGROUND: Current IBD recommendations cite that identifying an interested and experienced adult provider is essential for adolescent IBD patients to successfully transition to adult care. However, few pediatric providers have located suitable adult providers or set up transition guidelines. This study had two goals: 1) characterize IBD transition within Rhode Island (RI) and 2) produce a referral list of interested adult providers for the future transition of adolescent IBD patients.

METHODS: We conducted a cross-sectional census study of all adult GI physicians and colorectal surgeons currently practicing within RI. Variables examined included comfort with adolescent care, opinions on transition practices, preferred ages for transition, and demographics. Surveys were distributed to office managers in all RI adult GI offices through office visits, fax, and mailings. Surveys were anonymous, but identified practice. Physicians could voluntarily identify themselves for a referral list for adolescent patients. The RI Hospital IRB approved the project in June 2009. Generalized estimating equations were used to analyze physician responses, accounting for within-practice nesting.

RESULTS: 80% of practices (n=20) participated in the survey, resulting in an overall response rate of 51% of physicians (n=78). 10% of respondents had formal training on transition, 12.5% had informal training on transition, and 12.5% had transfer policies for adolescent patients.

70% of respondents placed themselves on a referral list for accepting adolescent IBD patients. Physicians who placed themselves on the referral list were more likely to currently treat adolescent patients, to accept adolescent IBD patients earlier, and to believe that transition should start earlier (p=.006, p=.0135 and p=.0189 respectively). The longer physicians had been in practice, the less likely they were to place themselves on the referral list (0.93 times as likely per year, p=.0004).

There were significant differences in comfort level dependent on age and type of medical care (p<.0006). Average preferred ages for the beginning and end of transition were between 16 and 18. However, physicians also reported significant increases in comfort as patient age increased up to ages 19-21 for providing certain types of care (p<.04).

CONCLUSIONS: Differences between the physicians who did or did not place themselves on the adolescent referral list are associated with time in practice and view of adolescent health care. Physicians may accept adolescent patients before they are comfortable with all aspects of their care, which may be detrimental to the physician-adolescent relationship.

Slide 11

The University of North Carolina, Chapel Hill


Maria de Ferris, Kristi Bickford and Sohini Sengupta

Correspondence: Maria Ferris,

Objective: Given the lack of valid instruments available to measure health care transition (HCT) in pediatric populations, we used scale development methodology to create a valid and reliable measure of health care transition (HCT) indicators among pediatric populations with chronic diseases.

Methods: A set of 33 items in ten domains thought to measure different aspects of transitioning to adult care facilities were clinically-administered to 128 adolescents and emerging adults with the following chronic conditions: chronic kidney disease, kidney transplant, hypertension, diabetes, inflammatory bowel disease, liver transplant, sickle cell disease and systemic lupus erythematosus. We performed exploratory factor analysis (EFA) of the 33 HCT items. Internal consistency (Cronbach’s Alphas) was calculated for each factor (sub-scale) and overall scale resulting from the EFA.

Results: After several oblique rotations in the EFA, a final 3-factor solution emerged. Three distinct concepts of HCT were identified, with moderate to good Cronbach’s alphas: knowledge about disease and medicine (4 items, alpha = .68), treatment adherence (4 items, alpha = .82), and self-management of health care (4 items, alpha = .72). The overall alpha of the UNC Transition™ scale was .79, indicating good internal consistency.

Conclusion: The UNC TRxANSITION Scale™ is a reliable and valid tool for measuring disease knowledge, treatment adherence, and self-management behaviors of pediatric populations with chronic diseases who are transitioning into adult-focused health providers. Future research will involve developing and testing interventions to improve these HCT factors among pediatric populations with chronic diseases.

Slide 12

Children's Memorial Hospital, Chicago


Better knowledge and increased self-management of one’s health care condition are associated with a better perception of overall independence in young adults with chronic conditions

Shah, Parag, MD, MPH; Zebracki, Kathy MD, MPH; Zebracki, Kathy, PhD; Boudos, Rebecca, MSW; Ahlm, Sarah, MS; Mukherjee, Sue, MD; Weissberg-Benchell, PhD; Forcier, Michelle, MD, MPH

Correspondence:   Parag Shah,

Background: Transitioning from childhood to adulthood involves changes in roles for all parties involved. Parents and providers move from controlling health care decisions to being consultants. Young adults transition from being the recipient of health care to managing and owning their care. To make this transition successfully, young adults need to develop self-confidence and a feeling of independence. Consequently, transition care interventions should strive to foster these attitudes in young adults.

Objectives: To determine if higher levels of knowledge and self-management of one’s health care condition lead to a better perception of overall independence.

Design/Methods: The study is a retrospective chart review of a clinical tool administered to a convenience sample of patients in a variety of subspecialty clinics at a tertiary care children’s medical center. The tool was administered by a variety of multidisciplinary team members, each of whom was trained on use of the tool. Information was obtained from patients, parents, and providers. The data was compiled in the hospital’s electronic medical record (EMR), then transferred to a statistical analysis software. Knowledge and self-management questions were categorized into scores. Knowledge and self-management scores demonstrated face validity and convergent validity with selected markers such as age, grade level, and educational status. Analysis was done in SPSS and STATA.

Results: Data was collected on 304 patients, with an age range of 11-26 (mean 17.1) and 29% having cognitive impairment. Conditions varied, with 23% having a rheumatologic condition and 23% having spina bifida. Many patients were at least partially knowledgeable about their conditions (64%), and mostly knowledgeable about their medications (70%) and their purposes (66%). Self-management levels were somewhat lower, with most patients sometimes filling their medications independently (60%) and making their own appointments (68%). About 38% of patients managed their own appointments, while 37% partially did so and 24% did not. Independence compared to peers was high with 69% of respondents reporting they were equal or more independent compared to their healthy peers. After controlling for age and cognitive status, having greater knowledge about one’s health care resulted in greater odds of feeling equal or more independent than healthy peers (OR 2.56, 1.11-5.93, p<.05). Having greater self-management in medical activities also resulted in a better perception of independence compared to healthy peers (OR 3.64, 1.78-7.44, p<.001).

Conclusion: For many children with chronic illnesses, their health condition is a large part of their lives. This study demonstrates a strong correlation between better knowledge and self-management of one’s health care, and a better feeling of overall independence compared to one’s healthy peers. While limitations exist, this adds to the body of literature supporting programs that strive to improve health care knowledge and self-management skills for young adults. This effort is critical for helping adolescents gain the overall confidence and independence they need to thrive in the adult care setting.

Slide 13

Medical University of South Carolina

Assessing Resident Preferences for a Curriculum in Transition Medicine

SH Mennito

Correspondence:   SH Mennito,

Background: Increasing numbers of patients with special health care needs are transitioning from pediatric to adult health care. Numerous national committees have recognized the need for providers to be trained to care for this population. Unfortunately there is little emphasis on this training in most residency programs.

Objective: To assess resident preferences for format, timing and content of a transition medicine curriculum.

Methods: Trainees in 11 primary care residency programs (3 Pediatrics, 3 Internal Medicine (IM), 3 Family Medicine, 2 IM/Peds) at 3 institutions in South Carolina were surveyed to assess preferences related to the development of a transition medicine curriculum including timing of education, presentation modality, desire to see patients older or younger than dictated by training and to rank transition topics by level of need/interest (1=high, 7=low). Comparison of responses by program, PGY level and gender were done via t tests.

Results: Respondents (n=84) represented 3 institutions and 8 training programs. 80% of residents prefer that a curriculum be continuous through training and include clinical experience (79%), case discussions (60%) and lecture presentations (56%). 62% would value seeing patients older or younger than their training dictates; peds residents were significantly more likely to want this than IM residents (84% vs 42%, p=0.002). Topics ranked as high need (rank 1-2) included knowledge of pediatric illness persisting into adulthood (60%), identifying resources for young adults (57%) and end-of-life discussions for young adults (56%). IM residents were more likely than peds residents to highly rank medical knowledge of pediatric disease persisting into adulthood (77% vs 47%, p=0.05) and caring for patients reliant on caregivers (53% vs 9%, p<0.002). Both IM and peds residents were more likely than IM/Peds residents to highly rank end-of-life discussions for young adults (IM 65% vs 13%, p=0.002; Peds 69% vs 13%, p=0.004) and assessing medical and social independence (IM 59% vs 13%, p=0.03; Peds 53% vs 13%, p=0.04). There was no difference in responses based on PGY level and gender.

Conclusions: Residents report high interest in transition medicine topics and would prefer a continuous curriculum throughout residency using combined modalities for topic presentation. These results will help craft transition medicine curricula that are

Slide 14

UNC Chapel Hill

Psychosocial Functioning and Transition Readiness Predict Adherence and Healthcare Utilization

N. Fenton1, Zachary Smith2, Benjamin Harris2, Laura Robinson2, K. Bickford3 and M. Ferris3

1. Department of Psychology – UNC Chapel Hill

2. UNC School of Medicine

3. UNC Kidney Center

Correspondence:  Nicole Fenton,

Background: The transition from pediatric to adult-focused health care is a critical time yet, little is known about how to measure or facilitate transition readiness. The role of psychosocial factors, disease severity, disease burden and age at diagnosis in this process of transition needs to be elucidated.

Aims/Hypotheses: The first aim of this pilot study was to utilize the Disability-Distress-Coping Model to conceptualize how malleable psychosocial factors and disease characteristics may be significant predictors of transition readiness. Our hypothesis was that higher levels of psychosocial functioning (family functioning, coping efficacy, and quality of life) and lower levels of disease characteristics (disease severity, disease burden and age at diagnosis) would be significant positive predictors of transition readiness. The second aim was to examine how low transition readiness may lead to multiple negative consequences (emergency healthcare use, non-adherence). Our hypothesis was that transition readiness would be a significant negative predictor of emergency healthcare use and medication non-adherence.

Methods: Participants were recruited from the UNC Kidney Center outpatient nephrology clinic. Through a de-identified web-based survey multiple measures were administered including: the Family Relationship Index (family functioning), KidCope (coping efficacy), PedsQL (quality of life) and the UNC TRxANSITION ScaleTM version 3 (overall transition readiness, adherence readiness, knowledge readiness and self-management readiness). Adherence was documented based on chart review and medication possession ratio, and emergency room visits (in the last year) were measured by self-report. Analyses were completed in SPSS and consisted of hierarchical regressions were age at diagnosis and disease severity were controlled for.

Results: We included 25 adolescents ages 13-18 with the diagnosis of chronic kidney disease stage ≥2. Of those approached, 88% agreed to participate. Their mean age was 15.5; 70% Males, 28% Whites, 54% Blacks; 18% other; 40% had private insurance. Overall, these adolescents had high levels of family functioning, coping efficacy, and transition readiness. Data analysis consisted of a series of hierarchical regressions, indicating that family cohesion is a significant positive predictor of both overall transition readiness and adherence readiness (Figure 1). However, neither quality of life nor coping efficacy were significant predictors of transition readiness. Additionally, none of the disease characteristics (disease severity, disease burden and age at diagnosis) were significant predictors of transition readiness. Hypothesis two was supported and results indicate that transition readiness is a significant negative predictor of medication non-adherence and emergency healthcare use (Figure 2).

Conclusions: These findings suggest that environmental psychosocial factors, specifically family cohesion, may be playing a role in facilitating transition readiness. Therefore as healthcare providers it may be important to encourage the family unit to provide support when adolescents are preparing for transition. Additionally, this study also suggests that low transition readiness may predict non-adherence to medications and emergency healthcare use. This highlights the importance of preparing for the transition from pediatric to adult-focused health services.

Slide 15


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    3. recruitment

    into a streamlined and user-friendly interface.


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