Learning from Transitional Care: Experiences and Recommendations of Young Adults

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There are few studies addressing the experience of transitional care in young adults with inflammatory bowel diseases (IBD). Most of the studies include patients with other chronic health problems, and are descriptive studies related to patient satisfaction regarding the experience, rather than studies based on clinical outcomes. Study Aim: To evaluate the experience of adolescents with IBD who have transitioned to adult care. Former patients in the pediatric gastroenterology clinic at a tertiary care center were interviewed using a two-part telephone questionnaire. Twenty young adults completed a ten question scaled survey using a five point Likert scale. The responses were ranked from 1 to 5 (5 as the most positive response), and consisted of questions related to level of preparedness from the pediatric provider, independent research on the adult provider, level of preparedness before first appointment with the adult provider, communication, confidence in ability to manage disease independently, understanding of disease and plan before transition, satisfaction with experience, as well as preferred method of education. Eighteen of the participants also agreed to complete an open-ended questionnaire. This portion of the interview included questions related to the patient's knowledge of their disease, medication, adherence, nutrition, self-management skills, knowledge of reproductive health, attending college or starting a job, health insurance, ongoing adult support, and finding a new heath care provider. The young adults described an overall positive transition experience with a mean of 4 (very satisfied) on the Likert scale. The results of the openended questions revealed six overarching themes and better reflected the complexity of the transition process. These themes included: 1) reaction to transition spanning a wide range of experiences from hand holding to guided discovery to complete independence; 2) relationship with healthcare providers, including the ability to listen and discuss sensitive topics; 3) knowledge including information about the treatment plan and the transition process itself; 4) emotions ranging from anxiety about their diet to helplessness when hospitalized; 5) communication including what occurs between the young adult and the pediatric provider, as well as between the pediatric and adult provider; and 6) recommendations which included the need to do research on their own during the transition process, not only on their medical condition, and resources available to them, but also on the background of their adult provider. Obtaining only quantitative data on the adolescent transitioning process is not sufficient to capture the experience. Many of the participants in this study remember what they consider a smooth transition, but even those individuals made recommendations to improve the process. Open-ended questions allow for patients to discuss what worked and did not work for them during the transition experience. Implications for Research to Nursing: Addressing the needs of the adolescent with IBD who is transitioning from pediatric to adult care includes careful attention to their medical, psychosocial, and educational needs. Communication is essential for this transition to occur smoothly. Nurses and nurse practitioners have a key role in this process.