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IBD: transition from pediatric to adult health care
Johanna/Hankje Escher, pediatric gastroenterologist
Falk Symposium 168: IBD in different age groupsMadrid, 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 adult GI doctor
Child+parents young adult
transfer
16-18 years14-16 yearstransition
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:
Pediatricgrowth, puberty, nutrition
endoscopy under general anesthesia
family oriented
special patient, child-friendly approach
pediatricians: nice, lots of time
Adultcancer, surveillance, new drugs
endoscopy: no anesthesia
parents not appreciated (wives/husbands?)
patient is one of many, neutral approach
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 forthose 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 feltrelieved 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 colonoscopyevery 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 adultdepartment as soon as possible!”
How to cross this bridge safely?
patient
pediatrician
mom
new doctor
nurse
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 young adult
Age 14
talk about his/her disease, medications, doses, side effects
strategies to take medications
use thermometer
impact of IBD on school and daily lifeHait et al. Inflamm Bowel Dis 2006;12:70-73
Skills and knowledge at age 16
Pediatrician adult system
Child+parents young adultAge 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
Hait et al. Inflamm Bowel Dis 2006;12:70-73
Skills and knowledge at age 16-18
Pediatrician adult system
Child+parents young adultAge 16-18
knows how to gather information on IBD
ability to book appointments, fill prescriptions, contact medical team
knows about insurance
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
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)
Results from the survey in adult GI doctors
Hait et al. J Ped Gastroenterol Nutr 2008;48:61-5
How to do transition?
Pediatrician adult system
Child+parents young adult
transfer
transition
Combined visits yearly combined visits
14 yr 18 yr
How to do transition?
Pediatrician adult system
Child+parents young adult
transfer
transition
Combined visits alternating visits
How to do transition?
Pediatrician adult system
Child+parents young adult
transfer
transition
Combined visits one combined visit
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 andadherence
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 appointment31% actually does
82% states to be able to see the doctor alone33% actually does
Good internal consistencyPositive 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 now3. stop talking to the parents but instruct the patient to talk about his/her
disease4. talk about “grown-up issues” (sex, drugs, school, work, cancer)5. teach and test the patient (checklist)6. send report to patient after each visit7. let the patient take care of his/her own medication and prescriptions8. check if the patient can tell when the disease worsens9. check if the patient can tell when treatment needs to be intensified10.provide complete written information to the new doctor and patient
Transition in IBD
pediatricians adult gastroenterologists