A 10-step-algorithm for transitioning pediatric
epilepsy patients to an adult service
Pohlmann-Eden,
1 Division
1
B. ,
Camfield,
2
C. ,
Camfield,
2
P. ,
Rahey,
1
S. ,
Doucette,
1
A.
of Neurology, Department of Medicine, CDHA, 2 Division of Neuropediatrics, Department of Pediatrics, IWK, Dalhousie University Halifax, Canada,
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 longterm costs and reduce Disability-Adjusted-Life-Years. On an individual level
the ultimate goals are to arrive at the maximum level of independence, selfsufficiency and self-worth, improve compliance, and more important to
avoid self-stigmatisation, social isolation and failure in occupational issues.
Table 1: Frequent barriers for transitioning
Table 2: Definitions of transfer and transition
from pediatric to adult services
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-stepalgorithm and a systematic process to see these patients (Figure 1, Table 5)
).
Case
The 10 step algorithm
• Patient R.H. Age 19 years at time of transition to adult care
(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
(5) 3 and 4 forwarded from the pediatric to adult service
(6) Joint appointment at the adult hospital including patient, family, pediatric
neurologists, adult epileptologist and epilepsy nurse to introduce the adult
service
(7) Review of history and examination by the adult team
(8) Formulation of short and long-term plans with special focus on health care
providers (epileptologist, neurologist, family physician, medical support
services)
(9) Review with the entire group including patient and family to agree on
diagnostic and therapeutic steps (medical and social) and follow up visits
(10) Summary letter to family physician and adult hospital health record
• 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
•
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):
• MRI coronal and axial FLAIR: left occipital ischemic lesion EEG non-epileptiform bilateral high-voltage dyscharge
• n = 36, 16m, 20f
• Age of onset:* = 6.0 yrs
(range neonate-14 yrs.)
• Number of AEDs used* = 6
• Duration of epilepsy*= 22 yrs
___________________
• In the follow up interval, frequent calls were received from the patient’s mother,
detailing seizures with repeated non-compliance, personal and employment
difficulties.
• Plan: Referral to Co-morbidity Clinic
* average
• Group 1: 17-23 yrs= 17
• Group 2: 24 +
= 19
• Youngest: 17, oldest 48 yrs
P
N
P
N
P
A
= patient
Table 3: Shared Management Model
Table 4:Cohort characteristics
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
A
N
P
N
P
N
Acknowledgement:
A
N
= pediatric neurologist/nurse
Table 5: 10-step algorithm
Further contact:
P
A
P
N
?
A
N
P
A
A
N
A
N
A
N
P
A
A
N
P
A
A
N
= adult neurologist/nurse
Figure 1: Process of transitioning including individualized
follow-up visits
Bernd Pohlmann-Eden MD PhD
email b.pohlmann-eden@dal.ca
Dr. Miriam Kaufman, Hospital of Sick Children, UofT; for conceptual advice
Christine Elliott, B.Sc. R.E.T, Halifax, for compiling cohort characteristics
Conclusions
Our algorithm for transitioning pediatric
patients with epilepsy to adult health care
services provides a schema for the
complex process of coordination,
collaboration, and communication amongst
youth, families, health care providers and
services. Further research is needed to
objectively document its value and to find
the individually ideal health care provider
(see cartoon).