IBD: transition from pediatric to adult health care Johanna/Hankje Escher, pediatric gastroenterologist Falk Symposium 168: IBD in different age groups Madrid, March 28 2009
Definitions Transition gradual process, between age 14-18 years, aimed to prepare the adolescent with IBD for the transfer to the adult gastroenterologist Transfer actual moment when adolescent moves to adult caregivers IBD transition clinic multidisciplinary approach, enables coordination of transition process
Adolescent IBD: Transition to adult care Pediatric gastroenterologist 14-16 years transition 16-18 years adult GI doctor Child+parents young adult transfer
Why do we need transition? To bridge differences in pediatric and adult care To ensure continuity of care Goals in transition Have the patient ready at age 16-18 years Have the parents ready Have the adult GI doctor ready and well-informed
Why do we need transition? To bridge differences in pediatric and adult care To ensure continuity of care Goals in transition Have the patient ready at age 16-18 years Have the parents ready Have the adult GI doctor ready and well-informed
Differences in pediatric and adult health care: Pediatric growth, puberty, nutrition Adult cancer, surveillance, new drugs endoscopy under general anesthesia endoscopy: no anesthesia family oriented parents not appreciated (wives/husbands?) special patient, child-friendly approach patient is one of many, neutral approach pediatricians: nice, lots of time adult gastroenterologists: business-like approach, less time
What do patients say Jan, 16 years old, UC patient since age of 8: Whenever I feel bad, I ask my mom to call the doctor. My mom gets a prescription for those enemas that she gives me before I go to sleep. Marieke, 19 years old, CD patient diagnosed at 11: The new doctor told me and my parents I should come alone at the next visit. I felt relieved but my parents were a little angry. Daisy, 18 years old, UC patient since age of 15: The gastroenterologist told me at the first visit that I was going to have a colonoscopy every year to check for cancer. Me and my parents were in shock, the pediatrician had never told us about it! Elise, 15 years old, CD patient since age of 13: I just hate sitting in the waiting room in Children s Hospital. All those crying babies and toddlers with their fussy moms drive me mad. Please just send me to the adult department as soon as possible!
How to cross this bridge safely? nurse mom new doctor patient pediatrician
How and when to. Have the patient ready at age 16-18 years Have the parents ready Have the adult GI doctor ready and well-informed
Patient Adolescent must shed the sheltered environment of childhood and achieve self-reliance and self-dependent living * Adolescence is a time of growth and change that causes frustration about the present and anxiety about the future * When is a good time to transfer patient to adult care? between 16-18 years when disease is inactive when the adolescent has the skills and knowledge * NASPGHAN, J Ped Gastroenterol Nutr 2002
Skills and knowledge at age 14 Pediatrician adult system Child+parents Age 14 talk about his/her disease, medications, doses, side effects strategies to take medications use thermometer impact of IBD on school and daily life young adult Hait et al. Inflamm Bowel Dis 2006;12:70-73
Skills and knowledge at age 16 Pediatrician adult system Child+parents Age 16 identify medical team knows names and purposes of procedures and tests knows medical history knows name of IBD patient support organisations understands risk of non-adherence knows about cancer risk and surveillance young adult Hait et al. Inflamm Bowel Dis 2006;12:70-73
Skills and knowledge at age 16-18 Pediatrician adult system Child+parents Age 16-18 knows how to gather information on IBD ability to book appointments, fill prescriptions, contact medical team knows about insurance young adult Hait et al. Inflamm Bowel Dis 2006;12:70-73
How and when to. Have the patient ready at age 16-18 years Have the parents ready Have the adult GI doctor ready and well-informed
Parents Reluctant to leave the pediatric team Sometimes feel left out after having been intimately involved with the care of their child Fear Transition is a family matter * NASPGHAN, J Ped Gastroenterol Nutr 2002
How and when to. Have the patient ready at age 16-18 years Have the parents ready Have the adult GI doctor ready and well-informed What should the new doctor know? all about disease, past and present medications, surgery vaccinations, childhood diseases growth potential (target height) fears and concerns of patient and parents
The adult gastroenterologist Survey among 1132 adult gastroenterologists patient skills necessary for transfer problems occurring in patients transitioning to their practice check own knowledge on medical and developmental issues unique to adolescence response rate 34% 85% male, 62% more than 15 years in practice Hait et al. J Ped Gastroenterol Nutr 2008;48:61-5
Results from the survey in adult GI doctors important issues, thought often be a problem 69% knowledge of medications 55% knowledge of medical history 51% knowledge of impact of smoking, alcohol and drugs on health 51% written medical summary provided by pediatric gastroenterologist less important issues for transition: 15%: patient s capability to visit clinic alone 13%: patient s capability to undergo endoscopy under conscious sedation Hait et al. J Ped Gastroenterol Nutr 2008;48:61-5
Results from the survey in adult GI doctors Own expertise: 96%: to know about medical aspects of adolescent health care is important (73% felt competent) 89%: to know about growth, pubertal development is important (46% felt competent) Hait et al. J Ped Gastroenterol Nutr 2008;48:61-5
How to do transition? Combined visits yearly combined visits Pediatrician transition 14 yr 18 yr adult system Child+parents transfer young adult
How to do transition? Combined visits alternating visits Pediatrician transition adult system Child+parents young adult transfer
How to do transition? Combined visits one combined visit Pediatrician transition adult system Child+parents young adult transfer
Transitional clinic in Rotterdam the team: 2 pediatric gastroenterologists 1 adult IBD-gastroenterologist IBD nurse the outpatient clinic Located in the adult hospital, adjacent to Children s Hospital Patients visit at least 4 times a year starting at age 14 Combined visits once yearly (pediatric GI + adult GI) Other visits: pediatric gastroenterologist and/or nurse Nurse trains and checks self-management (SMS, mobile phones, email)
How to measure the effect of transition? Adherence (to outpatient clinic visits, medications) Knowledge of disease Self-efficacy: Questionnaire on self-efficacy in IBD patients: IBD-yourself 17-item, 80-more statements, 8-page questionnaire, items on knowledge of disease, diagnostic tests, medication, nutritional therapy, hospital visits and transition, treatment behaviour and adherence Zijlstra et al. ECCO 2009
Self-efficacy Questionnaire tested cross-sectionally in transitional patients (n=50) mean age 15.7 years 96% states to be able to prepare medication and remembers to take it 90% actually does 74% states to be able to make appointment 31% actually does 82% states to be able to see the doctor alone 33% actually does Good internal consistency Positive correlation between number of visits to TC and self-efficacy
10 steps to successful transition 1. find a dedicated adult gastroenterologist, a nurse and start your team in order to coordinate transtion (combined or alternating visits) 2. tell the patient at age 14 that transition starts now 3. stop talking to the parents but instruct the patient to talk about his/her disease 4. talk about grown-up issues (sex, drugs, school, work, cancer) 5. teach and test the patient (checklist) 6. send report to patient after each visit 7. let the patient take care of his/her own medication and prescriptions 8. check if the patient can tell when the disease worsens 9. check if the patient can tell when treatment needs to be intensified 10.provide complete written information to the new doctor and patient
Transition in IBD pediatricians adult gastroenterologists