2. Some facts …
• In the past, a lot of young adults
died from renal failure.
• But...
• now 90 % of people with spina
bifida survive to adulthood
thanks to increased knowledge
about the neurogenic bladder
dysfunction and treatment
3. Concerns …
• the majority of individuals
living with spina bifida are
adults but there are only few
centers for the follow-up of
adults
• most of the centers stop the
admission of people with
spina bifida when they reach
18-21 year old
4. Problems
• lack of experience about problems related to adults with SB explains
why in the past very little was published about later adult ages
• large group of adults don’t have access to a regular doctor who has
an overview of the SB problems
• hospitalisation rate in adults with SB is 9 times higher than in other
populations
5. Follow the milestones : • need for research on multiple
issues for the transition of
people with disabilities from
childhood into adulthood
• only in the last decennium there
is an interest in transition, that
resulted in many publications
• encourage the paediatric
centres to set up an adult
follow-up centre.
6. The “history” of multidisciplinary spina bifida
care at Gasthuisberg
• started from parent organisation in
cooperation with pediatric
neurology out of concern for the
rights of the kids with spina bifida
to have a better quality of live
• agreement between governement
and health insurance to set up a
multidisciplinary care for children
AND adults
• convention of spina bifida was a
fact in 2005
7. Convention between the hospital and the health
insurance
• financial support from health
insurance to the hospital
• training a multidisciplinary team and
increasing knowledge around spina
bifida
• following at least 50 persons with
spina bifida
9. Who can accede the convention
• children :
– spina bifida aperta
– spina bifida occulta
– spinal cord injuries when it occurs in
the first 2 years of life
• adults :
– adults from the transition of the
pediatric care
– adults with spina bifida who were not
yet in a multidisciplinairy follow-up
10. Commitment for the patient with spina bifida
• visit the spina bifida clinic
depending on the age of the child
0-3 years: 3-4 times a year
3-18years : 2 times a year
>18year : 1 time a year
11. Team members of the convention
• pediatrician in the neurology
• nurse
• physiotherapist
• occupational therapist
• phycologist
• dietrician
• social worker
• administrator
12. Close contact with other disciplines
• neurosurgeon
• orthopedic surgeon
• urologist-nefrologist
• adominal surgeon
• internist
• rehabilitation specialist
13. What are the commitments of the convention
• for multidisciplinary team :
– following the clinics
– attend the weekly meetings
– making a treatment and revalidation
plan
– be the go between for the care in the
home situation
– building up knowledge around spina
bifida
14. Medical benefits of the convention
• specialized health care centers
• care coordination by making a good
health care planning in cooperation with
a multidisciplinary team
the burden of a treatment can not exeed
the benefits
• partnership with the child, his parents
and other child and adult health care
professionals
15. The benefits for parents, children and adults with
spina bifida
• regular specialized medical
follow-up
• detecting problems and early
treatment
• paramedical advices
• medical and paramedical
support in between
16. General benefits of convention
• support in independent living, school, social
interactions, body image
• from being disabled to being “competent”
• having a contact person for advice and
information
17. Helping the child through transition :
• follow the milestones
• stimulate independence
• make the child self confident with
his/her health care
• introduce the children into adult
care
18. Helping the adults to take care of their daily lives
“You are expected to know
your medical history. In the
past my mother discussed
my care with the doctor, but
now she is gone, my father is
saying to me that I should
know all this. Wait a minute,
when did I get in charge of my
medical story??”
19. The main task for a multidisciplinary team is to improve
the development of the outcomes and fulfilling potential
• to think in ‘abilities’ and not ‘disabilities’
• to focus on the strengths rather than the deficits
• to emphasise strengths and to build on them
Put these principles into practice,
professionals and families must
work together as an effective partnership
20. “ what is the key ingredient of respect for the rights of people living with
longterm impairment ? The answer is shockingly simple, it is
communications….”
21. References :
• Transition to adult health care for adolescents with spina bifida : research
issues; susan M. Sawyer 2010
• Consensus statement on health care transitions for young adults with
special health care needs;america academy of family physicians 2002
• What do we really know about the transition to adult-centered health care?
A focus on cerebral palsy and spina bifida ; Jessie A binks 2007
• Optimizing health care for adults with spina bifida ;Thomas Webb 2010
• Mother knows best : medical record management for patients with spina
bifida during the transition to adult care; Carsten S. Osterlund 2005
• The role of the nurse coordinator in spina bifida clinics ; Mary Jo Dunleavy
2007
