johanna/hankje escher, pediatric gastroenterologist falk … · 2017-10-13 · 2 pediatric...

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

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….




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


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


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


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….




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….




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


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


How to do transition?



transfer

transition

Combined visits yearly combined visits

14 yr 18 yr




transfer

transition

Combined visits alternating visits




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

johanna/hankje escher, pediatric gastroenterologist falk … · 2017-10-13 · 2 pediatric...

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