Janis Arnold

Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists.

Objectives: Transition of patients with inflammatory bowel disease (IBD) from pediatric to adult providers requires preparation. Gastroenterologists for adult patients (“adult gastroenterologists”) may have expectations of patients that are different from those of pediatric patients. We sought to explore the perspectives of adult gastroenterologists caring for adolescents and young adults with IBD, to improve preparation for transition. Materials and Methods: A survey sent to 1132 adult gastroenterologists caring for patients with IBD asked physicians to rank the importance of patient competencies thought necessary in successful transition to an adult practice. Providers reported which problems occurred in patients with IBD transitioning to their own practice. Adult gastroenterologists were asked about medical and developmental issues that are unique to adolescence. Results: A response rate of 34% was achieved. Adult gastroenterologists reported that young adults with IBD often demonstrated deficits in knowledge of their medical history (55%) and medication regimens (69%). In addition, 51% of adult gastroenterologists reported receiving inadequate medical history from pediatric providers. Adult providers were less concerned about the ability of patients to identify previous and current health care providers (19%), or attend office visits by themselves (15%). Knowledge of adolescent medical and developmental issues was perceived as important by adult gastroenterologists; however, only 46% felt competent addressing the developmental aspects of adolescents. Conclusions: For successful transition, adolescents and young adults with IBD need improved education about their medical history and medications. Pediatric providers need to improve communication with the receiving physicians. In addition, adult providers may benefit from further training in adolescent issues. Formal transition checklists and programs may improve the transition of patients with IBD from pediatric to adult care.

Educate, communicate, anticipate-practical recommendations for transitioning adolescents with IBD to adult health care

&NA; The cyclical nature of chronic illness requires that children with inflammatory bowel disease be transitioned to the adult medical system with as much continuity of care as possible. Transition from pediatric to adult medical care continues to present significant barriers. The philosophy of transition centers on a process, with the actual transfer to adult care as a point along this clinical pathway. Concrete steps can be taken to help patients prepare for new responsibilities. The aim of this review is to propose a clinical and developmental timeline for both patients and their medical team, including specific responsibilities for both, so that the partnership can best promote a successful transition.

Self-Management of Older Adolescents with Inflammatory Bowel Disease: A Pilot Study of Behavior and Knowledge as Prelude to Transition

Objective: Patients gradually assume responsibility for self-management. This study sought to determine whether adolescents with inflammatory bowel disease (IBD) have developed key skills of self-management prior to the age at which many transfer to adult care. Patients and Methods: Adolescents aged 16 to 18 years old in the Children’s Hospital Boston IBD database (94 total) received a mailed survey assessing knowledge and confidence of their own health information and behaviors. Results: Respondents (43%) could name medication and dose with confidence but had very poor knowledge of important side effects. Most patients deferred responsibility mostly or completely to parents for scheduling appointments (85%), requesting refills (75%), or contacting provider between visits (74%). Conclusions: Older adolescents with IBD have good recall of medications but not of side effects. Parents remain responsible for the majority of tasks related to clinic visits and the acquisition of medications.

Medication knowledge: an initial step in self-management for youth with inflammatory bowel disease.

Objective: Adolescents with chronic illness need to develop skills to independently manage their own health. Knowledge of medication is an early step in this process. We explored which factors affect acquisition of medication knowledge in adolescents with inflammatory bowel disease (IBD). Patients and Methods: Consecutive patients with IBD older than 10 years received a confidential survey at an outpatient visit including questions regarding medication name, dose, and adverse effects. Results were compared with the medical record. Demographic characteristics obtained included age, sex, disease duration, and type of IBD. Results: Completed surveys were returned by 294 patients (65% of those approached). Overall, 95% of patients could name their medication and 54% could identify their correct dose. Of 95 patients receiving biologics, 88% could identify the medicine and 50% could report either dose or timing. Of 139 patients on immunomodulator therapy, 94% could name medicine and 68% reported correct dose. Sex, type, or duration of disease did not affect name or dose knowledge. Generally, older patients did not demonstrate better medication or dosage knowledge than younger patients, although there was a significant trend toward improved knowledge of side effects for older patients. However, <32% of all of the patients could report a single major medication side effect. Conclusion: Medication knowledge is an early stage of self-management, yet many adolescents cannot report the dose of IBD medications, nor know the side effects of immunosuppression. This finding persists into late adolescence, which has ramifications for patients as they separate from parents for college or work.

Social Workers as Transition Brokers: Facilitating the Transition From Pediatric to Adult Medical Care

Transition from pediatric to adult medical care and the significant psychosocial considerations impacting this developmental process are a primary focus in health care today. Social workers are often the informal brokers of this complex and nuanced process and are uniquely trained to complete biopsychosocial assessments to understand the needs of patients and families and address psychosocial factors. Their extensive knowledge of resources and systems, along with their sophisticated understanding of the relationship issues, family dynamics, cultural implications, and basic person-in-context approach allow for unique collaboration with the health care team, family, and community supports to develop successful transition plans and programs.

When Independent Healthcare Behaviors Develop in Adolescents With Inflammatory Bowel Disease

Background: Patients with chronic health needs are expected to gradually assume responsibility for health maintenance behavior as they move toward adulthood. We sought to evaluate the influence of factors such as age, duration of disease, and gender by examining the self‐reported health behaviors of adolescents with inflammatory bowel disease (IBD). Methods: Confidential voluntary surveys were administered to all IBD outpatients over age 10 during a 4‐month period. Questions addressed responsibility for health behaviors such as medication, provider visits, and communication. Likert scales measured the degree of independence: 1 (my parents only) through 3 (parents share equally with me) to 5 (I do it myself). Patient participation during doctor visits was also assessed. Results: Of 358 patients approached, 294 (82%) returned completed surveys. Respondents were 51% male and 69% had Crohns disease. Patients took increasingly active roles, but by ages 19–21 only 45% ordered medication refills, and 50% picked up medication from pharmacy. Only 35% of 19–21‐year‐olds scheduled appointments and 30% contacted providers between visits if problems arose. Most patients could answer provider questions (55% at age 16–18) but fewer asked questions of the provider (15% at the same age). Males were less likely to order their own prescription refills (P = 0.017) or prepare questions (P = 0.009). Duration of disease did not change skill acquisition. Conclusions: Adolescents develop independence in managing their IBD slowly and many patients ≥18 years are still assisted by parents. Focus on specific skill acquisition may help patients with self‐management skills expected in adult healthcare. (Inflamm Bowel Dis 2012;)

Provider Awareness Alone Does Not Improve Transition Readiness Skills in Adolescent Patients With Inflammatory Bowel Disease

Objective:Adolescent patients with chronic health conditions must gradually assume responsibility for their health. Self-management skills are needed for a successful transfer from adolescent to adult health care, but the development of these skills could be resource intensive. Pediatric providers are already instrumental in teaching patients about their health and may improve these skills. The aim of the study was to evaluate whether informal education of pediatric providers regarding transition improves inflammatory bowel disease (IBD) patient self-management skills. Methods:Consecutive patients with IBD older than 10 years who presented to the outpatient setting were administered a survey regarding self-management behaviors in 2008 and 2011. During this time, several conferences on transition were presented to the providers. Results:In 2008, 294 patients completed the survey (82%) compared with 121 patients (89%) in 2011. The patient groups were comparable with respect to sex (boys 50% vs 42%), mean age (16.7 vs 16.2 years), and type of IBD (Crohn 68% vs 66%). The 13- to 15-year-olds reported calling in refills (11%, 8%, respectively), scheduling clinic appointment (0, 1%), preparing questions (13%, 5%), and taking the main role in talking during clinic visits (15%, 24%). The 16- to 18-year-olds reported calling in refills (13%, 27%), scheduling clinic appointments (9%, 6%), preparing questions (9%, 16%), and taking the main role in talking in clinic visits (36%, 45%). Responsibility for behaviors gradually increases with age, but did not differ significantly between 2008 and 2011. Conclusions:Increasing awareness around transition readiness for pediatric providers had an insignificant effect on the self-management skills of patients with IBD. A more formal or structured approach is likely required to improve transition skills in adolescent patients.

Transition to Adult Care

Young adults with inflammatory bowel disease need to be transitioned to the adult medical system with as much continuity of care as possible. Transition from pediatric to adult medical care continues

Coping with college and inflammatory bowel disease: implications for clinical guidance and support.

Background:Studies have shown that young adults with chronic diseases, including inflammatory bowel disease (IBD), experience greater difficulty during the transition to college, reaching lower levels of educational attainment and reporting greater levels of perceived stress than their otherwise-healthy peers. We performed a qualitative study to better understand how underlying illness shapes the college experience for patients with IBD and how the college experience, in turn, impacts disease management. Methods:Fifteen college students with IBD were recruited from the Boston Childrens Hospital Center for IBD. We conducted an approximately 1 hour semistructured qualitative interview with each participant, and the interviews were thematically analyzed after an iterative and inductive process. Results:Four primary themes were identified: (1) The transition experience of college students with IBD is shaped by their health status, perceived readiness, and preparedness, (2) Elements of the college environment pose specific challenges to young adults with IBD that require adaptive strategies, (3) College students with IBD integrate their underlying illness with their individual and social identity, and (4) College students navigate health management by conceptualizing themselves, their families, and providers as serving particular roles. Conclusions:For young adults with IBD, college is a proving ground for demonstrating self-care and disease management practices. Future initiatives aimed at this population should recognize the evolving roles of patients, parents, and providers in disease management. Increased attention should also be paid to the promotion of patients self-management and the unique challenges of the structural and psychosocial college environment.

Effective advocacy for patients with inflammatory bowel disease : Communication with insurance companies, school administrators, employers, and other health care overseers

&NA; In addition to their physical challenges, children and adolescents with inflammatory bowel disease (IBD) living in the United States face a number of administrative and regulatory hurdles that affect their quality of life. This article, written by a physician, attorney/patient advocate, and social worker, discusses a number of these challenges and describes how the provider can help his or her patient overcome them. Specifically, the article discusses 4 areas in detail: appeals of denials of coverage from insurance companies and third party payors; assisting children with IBD with classroom and school accommodations; assisting uninsured children in obtaining Social Security benefits; and aiding a parent to care for their child using the Family and Medical Leave Act. Although this article has a pediatric focus, adults have similar advocacy needs. Case examples and sample letters to third‐party payors, schools, and employers are included in this article.