A 10-step-algorithm for transitioning pediatric

1
A 10-step-algorithm for transitioning pediatric
epilepsy patients to an adult service
Pohlmann-Eden, B.1, Camfield, C.2, Camfield, P.2,
Rahey, S.1, Doucette, A.1
1 Division of Neurology, Department of Medicine,
CDHA, 2 Division of Neuropediatrics, Department
of Pediatrics, IWK, Dalhousie University Halifax,
Canada,

• The 10 step algorithm
• (1) Identification of patients ready for
  transition
• (2) Preparation of patient and family for
  transition by the pediatric team
• (3) Completion of a structured medical
  synopsis form including details of the
  epilepsy and treatment, proposed cause and
  investigations and associated problems
• (4a) Documentation of social information using
  a structured format completed by
  the caretaker of a handicapped individual
  including comorbid physical,
  cognitive and behavioural difficulties
  custody and financial support names
  and locations of health, educational and social
  services involved medications,
  vitamins and alternative therapies, social
  network and recreation and
  nutritional status(4b) If the individual was
  normally intelligent, a detailed form was
  completed by the patient which includes
  an outline of education and employment, driving
  status, medications, vitamins and
  alternative therapies, marital status, and
• extracurricular activities
• 3 and 4 forwarded from the pediatric to adult
  service
• Joint appointment at the adult hospital
  including patient, family, pediatric
  neurologists, adult epileptologist and epilepsy
  nurse to introduce the adult service
• Review of history and examination by the adult
  team
• Formulation of short and long-term plans with
  special focus on health care providers
  (epileptologist, neurologist, family physician,
  medical support services)
• Review with the entire group including patient
  and family to agree on diagnostic and
  therapeutic steps (medical and social) and follow
  up visits
• Summary letter to family physician and adult
  hospital health record

• Case
• Patient R.H. Age 19 years at time of transition
  to adult care
• Significant learning problems, but graduated
  from high school currently unemployed,
• living with maternal aunt (unable to live in
  his parental home because of
• uncontrolled outbursts of temper and defiance
  of the house rules).
• Normal birth history, presented with a
  generalized tonic-clonic seizure at age 11
  years. In retrospect had a several year history
  of episodic unformed visual hallucinations
  (colored balls) /- confusion
• CT Scan revealed left occipital porencephalic
  cyst. No MRI performed prior to transition
• Treatment with 5 AEDs was unsuccessful.
  Divalproex plus levetiracetam resulted in
• seizure freedom but unacceptable weight gain.
  Episodic non-compliance common
• always accompanied by seizures, either focal
  or secondarily generalized. Longest
• seizure-free interval about 1 year

Background When children with epilepsy reach late
adolescence, transition to an appropriate service
for adults is often problematic. Frequently
transfer is abrupt or there is inappropriate
retention in pediatrics. A significant number
become disconnected (lost) from health care all
together (Steinbeck et al. 2008) due to various
barriers (Table 1). The conceptual
differentiation between transfer and transition
is crucial. Transfer is an event, transition is a
process (Table 2). Current evidence suggests that
Transition Clinics improve quality of health care
in chronic diseases starting in childhood,
prevent comorbidity and long-term costs and
reduce Disability-Adjusted-Life-Years. On an
individual level the ultimate goals are to arrive
at the maximum level of independence,
self-sufficiency and self-worth, improve
compliance, and more important to avoid
self-stigmatisation, social isolation and failure
in occupational issues.

• At time of transition, he had discontinued AEDs
  for least 6 months. He
• claimed no ill effects but mother provided
  details of generalized seizures described
• by family members and friends
• Unable to maintain full time employment due to
  seizures and poor behavior (lack of insight
  into consequences of his actions, violent
  outbursts towards others when unable to get
  his own way). Frequent marijuana use (suspected
  of selling the drug to support himself).
• Management plan from adult service 1) Full
  repeat neurological examination 2) Explain
  concept and pathopysiology of epilepsy syndrome
  to patient
• 3) Recommendation to take AED, levetiracetam
  was restarted
• 4) Importance of compliance emphasized
• 5) 3-sentence summary of disease explained
• 5) EEG scheduled
• 6) MRI scheduled 7) Follow-up in 6 months
• Test results (adult clinic)

Table 1 Frequent barriers for transitioning
from pediatric to adult services
Table 2 Definitions of transfer and transition
Method 2 pediatric, 1 adult epileptologist and an
adult epilepsy nurse developed a transition
clinic for youth with epilepsy. The ultimate goal
on an individual level was to gradually empower
the individual child to become knowledgeable
about epilepsy, self-sufficient and independent.
With this approach, it was hoped to prevent
stigmatisation, social isolation and failure in
occupational issues. A Shared Management
Approach (Table 3) served as a model (Kieckhefer
and White 2006) to gradually hand over
responsibilities from the health care provider
and family members to the patient. Based on the
first 36 patients (Table 4), we developed a
10-step-algorithm and a systematic process to see
these patients (Figure 1, Table 5) ).

• n 36, 16m, 20f
• Age of onset 6.0 yrs (range neonate-14
  yrs.)
• Number of AEDs used 6
• Duration of epilepsy 22 yrs__________________
  _ average
• Group 1 17-23 yrs 17
• Group 2 24 19
• Youngest 17, oldest 48 yrs

Table 5 10-step algorithm
Figure 1 Process of transitioning
including individualized

follow-up visits
Table 4Cohort characteristics
Table 3 Shared Management Model
References Steinbeck et al. Journal of
Pediatric and Childhood Health 2008 44 478-484
Pediatrics 2002
110 (6) 1315 Society of Adolescent Medicine
Kieckhefer and White
2006
Further contact Bernd Pohlmann-Eden MD PhD
email b.pohlmann-eden_at_dal.
ca Acknowledgement Dr. Miriam Kaufman, Hospital
of Sick Children, UofT for conceptual
advice Christine Elliott, B.Sc. R.E.T, Halifax,
for compiling cohort characteristics