Developing from child to adult: Risk factors for poor psychosocial
outcome in adolescents and young adults with epilepsy
R.P.J. Geerlings
a,
⁎, A.P. Aldenkamp
a,b,c,d
, L.M.C. Gottmer-Welschen
a
, P.H.N. de With
b
, S. Zinger
b
,
A.L. van Staa
e,f
, A.J.A. de Louw
a,b
a
Epilepsy Center Kempenhaeghe, Heeze, The Netherlands
b
Faculty of Electrical Engineering, University of Technology, Eindhoven, The Netherlands
c
Department of Neurology, Maastricht University Hospital, The Netherlands
d
Department of Neurology, Ghent University Hospital, Belgium
e
Institute of Health Policy & Management, Erasmus University Rotterdam, The Netherlands
f
Research Centre Innovations in Care, Rotterdam University of Applied Sciences, The Netherlands
abstract article info
Article history:
Received 1 May 2015
Revised 16 July 2015
Accepted 28 July 2015
Available online 24 August 2015
Keywords:
Transition to adult care
Risk factors for transition
Epilepsy
Transition clinic
Introduction: Childhood-onset epilepsy during the years of transition to adulthood may affect normal social,
physical, and mental development, frequently leading to psychosocial and health-related problems in the
long term.
Objective: This study aimed to describe the main characteristics of patients in transition and to identify risk factors
for poor psychosocial outcome in adolescents and young adults with epilepsy.
Methods: Patients with epilepsy, 15–25 years of age, who visited the Kempenhaeghe Epilepsy Transition Clinic
from March 2012 to December 2014 were included (n = 138). Predefined risk scores for medical, educational/oc-
cupational status, and independence/separation/identity were obtained, along with individual risk profile scores
for poor psychosocial outcome. Multivariate linear regression analysis and discriminant analysis were used to
identify variables associated with an increased risk of poor long-term psychosocial outcome.
Results: Demographic, epilepsy-related, and psychosocial variables associated with a high risk of poor long-term
outcome were lower intelligence, higher seizure frequency, ongoing seizures, and an unsupportive and unstable
family environment. Using the aforementioned factors in combination, we were able to correctly classify the
majority (55.1%) of the patients regarding their risk of poor psychosocial outcome.
Conclusion: Our analysis may allow early identification of patients at high risk of prevention, preferably at
pretransition age. The combination of a chronic refractory epilepsy and an unstable family environment consti-
tutes a higher risk of transition problems and poor outcome in adulthood. As a consequence, early interventions
should be put into place to protect youth at risk of poor transition outcome.
© 2015 Elsevier Inc. All rights reserved.
1. Introduction
Transition from adolescence to adulthood is a challenging period in
life, especially for youth with epilepsy and for their caregivers [1]. Epi-
lepsy and comorbidities, their treatment, and persistent social stigma
have a substantial impact on the child's and their relatives' lives [1,2].
Furthermore, childhood-onset epilepsy and comorbid conditions may
interfere with normal brain maturation and delay age-appropriate
social, physical, and cognitive development, leading to poor psychoso-
cial outcome and societal integration in the long term [3]. Adolescents
are vulnerable to negative psychosocial consequences [4]. Sillanpää
and Cross [1] and Camfield and Camfield [5] evaluated long-term psy-
chosocial outcome of childhood-onset epilepsy among patients without
obvious cognitive impairment. Adults with childhood-onset epilepsy
had lower educational levels, less social interaction, and more problems
in self-care and daily activities compared with healthy controls. Chin
et al. [6] examined psychosocial, medical, and mental health outcomes
in adults with childhood-onset epilepsy. Patients with epilepsy without
intellectual disabilities or other comorbid conditions showed outcomes
equal to those in healthy controls regarding medical, educational, and
vocational status but experienced significantly more problems with so-
cial interaction and relationships. Furthermore, patients with epilepsy
and concomitant cognitive impairment had worse psychosocial out-
come compared with controls with cognitive impairment in absence
Epilepsy & Behavior 51 (2015) 182–190
⁎ Corresponding author at: Department of Research & Development, Epilepsy Centre
Kempenhaeghe, P.O. Box: 61, NL-5590 AB Heeze, The Netherlands. Tel.: +31 40 227
9022; fax: +31 40 226 5691.
E-mail addresses: GeerlingsR@Kempenhaeghe.nl (R.P.J. Geerlings),
AldenkampB@Kempenhaeghe.nl (A.P. Aldenkamp), GottmerL@Kempenhaeghe.nl
(L.M.C. Gottmer-Welschen), P.H.N.de.With@tue.nl (P.H.N. de With),
ZingerS@Kempenhaeghe.nl (S. Zinger), a.van.staa@hr.nl (A.L. van Staa),
LouwA@Kempenhaeghe.nl (A.J.A. de Louw).
http://dx.doi.org/10.1016/j.yebeh.2015.07.035
1525-5050/© 2015 Elsevier Inc. All rights reserved.
Contents lists available at ScienceDirect
Epilepsy & Behavior
journal homepage: www.elsevier.com/locate/yebeh