SPINA BIFIDA MULTIDICIPLINAIRY TEAM

A NEW START IN FOLLOW-UP FOR ADULTS WITH SPINA BIFIDA

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

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

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

•  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.

Follow the milestones :

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

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

Spina bifida centres in Belgium

•  UZ Gasthuisberg

•  UZ Gent

•  UCL Brussels

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

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

Team members of the convention •  pediatrician in the neurology •  nurse •  physiotherapist •  occupational therapist •  phycologist •  dietrician •  social worker •  administrator

Close contact with other disciplines

•  neurosurgeon •  orthopedic surgeon •  urologist-nefrologist •  adominal surgeon •  internist •  rehabilitation specialist

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

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

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

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

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

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??”

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

“ what is the key ingredient of respect for the rights of people living with longterm impairment ? The answer is shockingly simple, it is

communications….”

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