Principal Investigator: Emily von Scheven, MD, MAS
University of California San Francisco Children’s Hospital
The overall goal of this project is to address the complex issue of transitioning patients with chronic illness from pediatric providers to adult providers. In the medical literature, “transition” has been defined as “the purposeful planned movement of adolescents and young adults with chronic physical and mental conditions from child-centered to adult-oriented health care systems.” Therefore, the goal of a formalized “transition program” is to facilitate transition by comprehensively addressing the complex needs of a patient with chronic illness. For transition programs to be successful, it is essential that pediatric trainees are not only educated about the needs of children with chronic illness but also trained to implement the program. It is also important that adolescent aged patients acquire the necessary skills to take care of themselves medically and to maneuver in the health-care system. The construct of family-centered care provides a framework for addressing these educational needs of our patients.
Part 1: Pediatric resident transition educational intervention
We conducted a needs assessment of the pediatric residents utilizing an on-line survey (survey monkey) which revealed some interesting information regarding the resident’s lack of education and experience in this area. Forty-eight residents responded to the survey. Sixty-eight percent of residents reported that they were not comfortable caring for children with chronic illness in their continuity clinic, 85% reported lack of knowledge about community resources, 54% reported that they had not received training on the transition process, 31% reported that they did not address transition issues in their continuity clinic, and 54% reported that they had not been directly involved with transitioning a patient to an adult provider. Taken together the results of this survey suggest that there is tremendous need for these providers to be trained in transition care. Ultimately in addition to utilizing didactic methods, it is felt that expanded opportunities for real-life experience is also needed.
In collaboration with the Division of Adolescent Medicine, we developed a one hour lecture in the format of a power point presentation (attachment #1). The lecture covers a broad array of topics such as the definition of transitional care, the importance of transitional care, the relationship between transition and the developmental stages of adolescence, strategies for incorporating transitional care into a clinical practice, and the impact of transitional care on health care systems.
Part 2: Patient Component
We assessed transition readiness in a pilot group of patients in the rheumatology clinic. 51 patients, age 13-20 years, 78% female, with a variety of underlying conditions completed a questionnaire after approval from our IRB. On a scale of 0-10 they reported a moderate negative effect of their condition on their life(mean 5.2±2.7), only moderate understanding of their underlying condition(mean 6.8±2.4), notable concern about the change in doctors associated with transitioning to adult providers(5.2±2.8) and feeling only moderately prepared to manage their condition on their own without help from their parents(mean 6.1 ±2.7). There was a trend towards increased concern about transition to adult providers among older patients(p=0.07) suggesting that the older patients may be more attentive to the impending transfer of care. Taken together this data demonstrates that many of our patients are not yet ready to assume responsibility for their health care and are in need of an educational intervention.
We created a “Transition Binder” for patients, which includes a substantial amount of generic information and resources relating to transition, health insurance and vocational training/employment (Attachment #2). This binder also includes sections where patients can add material provided at their clinic visit, such as discharge instructions, and self-study questionnaires which can be used to assess knowledge and self-management skills.
We are currently creating a pediatric version of the Lupus Health Passport (pLHP), initially created by Dr. Paul Fortin inToronto. Initial modifications needed for the pediatric version included 1) addition of modules specially designed to facilitate transition, 2) a checklist to assess transition readiness, 3) self-management components, 4) pediatric health maintenance section (eg immunizations) and 5) changes in style and color to better appeal to teens. We conducted structured interviews with our patients and their parents with the research assistant and use of quantitative questionnaires. Overall feedback on the pLHP is very positive. On a scale of 0-10, subjects reported that they felt the LHP would be useful for helping to manage their Lupus(mean 9.0±1.0), they felt that the LHP would be easy to use(mean 8.7± 1.5), they would be likely to use the passport(mean 8.7±0.6), and they learned something from reviewing the passport(mean 7.3 ±21). Representative comments from the patients included that they liked the “preparing for my visit check-lists”, the “definition and purpose of medications”, the “staying healthy and routine screening” section, and the “transition and self-management” section. When asked about how the passport could be improved, they suggested expanding the space for writing, maintaining a separate log for past and current medications, addition of a section on “dealing” with illness, including target weight for age and height, and modifying the design to be more gender-neutral.
Our initial data suggests that the Pediatric Lupus Health Passport will be an acceptable and feasible tool for educating pediatric SLE patients about their disease symptoms and management and that it will aid pediatric SLE patients in their transition to adult care. One challenge that faces working with teens is identification of the best modality to meet their lifestyle. Many teens are now using technology to meet their educational needs and we are thus curious about what technology platform would serve them best in this area. The next step is to interview the patients on what modality is most desirable, considering all electronic formats (hand-held devices, cell phones, internet, chat rooms, twitter etc). This will be accomplished through focus groups over the next year.
Our findings reinforce the need for transition training for both providers and patients. Patients with rheumatic conditions are not prepared to take of their medical needs. We believe that optimizing future health and quality of life depends on achieving successful transition from pediatric to adult providers and on securing appropriate self-management skills. This ultimately requires strategies to optimize disease knowledge, self-efficacy, adherence and coping.
In addition to providing patients with tolls and educational interventions it is important that their providers understand the issues and the patients needs. Ultimately both pediatric and adult providers should be educated in this area. Our preliminary work suggests that the pediatric residents who are currently caring for these patients, and who will serve as future community providers are not receiving systematic teaching in this area.
Ultimately further educational strategies for our patients, their families, and their providers should result in improved self-management skills and improved outcomes for these patients with complex medical needs. The findings of this study have application to all chronic illness in children and can easily be adapted across a wide range of providers and conditions.