Citation: Malik MA, Malik H, Wali MW, Shabbir N, Saeed M. Treatment Gap in Childhood Epilepsy (TGCE): Pakistan Regional Study in Under-Resourced
Community. J Neurol Psychol. 2015;3(1): 7.
J Neurol Psychol
January 2015 Vol.:3, Issue:1
© All rights are reserved by Malik et al.
Treatment Gap in Childhood
Epilepsy (TGCE): Pakistan
Regional Study in Under-
Resourced Community
Keywords: Q ua lita tive re se a rc h; C hild ho o d e p ile p sy; Ep ile p sy
tre a tme nt gap; Ad he re nc e ; Antie p ile p tic d rug s; Inte rve ntio ns;
Bha kha r; Pa kista n
Abstra c t
Ba c kg ro und: The e p id e mio lo g ic a l d a ta o n c hild ho o d e p ile p sy,
e sse ntia l to p la n se rvic e s in re so urc e c o nstra ine d d e ve lo p ing na tio ns,
is sc a rc e . Id e ntifying the d e te rmina nts o f tre a tme nt g a p s in c hild ho o d
e p ile p sy is e sse ntia l to p ro vid e o p tima l c a re fo r c hild ho o d e p ile p sy.
Study type and duration: This wa s a d e sc rip tive c ro ss-se c tio na l
c o mmunity base d study c o nduc te d fro m April 14, 2014 to April 16,
2014, c o nd uc te d a t two p riva te ly o wne d ho sp ita ls in Bha kha r, Punja b ,
Pa kista n.
O bje c tive : To e va lua te the tre a tme nt g a p a nd its d e te rmina nts in
c hild ho o d e p ile p sy in Bha kha r c ity.
Methods: We conducted a random three-stage sampling of
c hild re n b e ing tre a te d a s e p ile p tic o r ha d e p ile p tic se izure s. Sub je c ts
were identifed through two days of free paediatric neurology camps,
o ne d a y a t e a c h ho sp ita l. A twe nty-ite m sc re e ning q ue stio nna ire
was used to identify the presence of epilepsy. Defnitions provided by
Inte rna tio na l Le a g ue a g a inst Ep ile p sy (ILAE) we re use d to c la ssify the
sc re e ne d p o sitive sub je c ts a s e p ile p sy. The tre a tme nt g a p a nd fa c to rs
a sso c ia te d with it we re a sse sse d a nd c a lc ula te d b y two p e d ia tric
ne uro lo g ists in c o nse nsus. Info rma tio n o b ta ine d fro m sub je c ts a nd
the ir c a re g ive rs inc lud e d : d e mo g ra p hic c ha ra c te ristic s, c urre nt a nd
p a st tre a tme nt o p tio ns utilize d , re a so ns fo r tre a tme nt o p tio ns use d a nd
re a so ns fo r no na d he re nc e to a ntie p ile p sy d rug s (AEDs).
Re sults: 130 c hild re n with e p ile p sy we re e nro lle d a nd e p ile p sy
treatment gap of 90% was documented among these patients.
No na d he re nc e wa s o b se rve d in 70(54%) p a tie nts, 50(38%) p a tie nts
we re a d he re nt to the p re sc rib e d AEDs, whe re a s 10(8%) p a tie nts ha d
ne ve r use d a ny a ntie p ile p tic d rug ; o n the o the r ha nd 61% o f the to ta l
patients were being treated with polytherapy (≥2AEDs). The most
c o mmo n c a use s o f TG C E we re c o st, untra ine d he a lth p ro fe ssio na ls,
p o o r/ no c o unse ling to the p a re nts, no na va ila b ility o f AEDs a nd
yo ung e r a g e o f the p a tie nts. No na tio na l o r inte rna tio na l o rg a niza tio n
wa s fo und a tte mp ting to d e c re a se TG C E in Bha kha r c ity.
C o nc lusio n: O wing to the ma rke d sc a rc ity o f c o mp re he nsive
c hild ho o d e p ile p sy c a re c e nte rs in und e r-re so urc e d c o mmunitie s
o f Pa kista n, o nly a mino rity o f p a tie nts a re b e ing tre a te d o p tima lly.
De te rmining the a p p ro p ria te inte rve ntio ns ne e d to na rro w the
tre a tme nt g a p a nd the se re ly c ritic a lly up o n und e rsta nd ing the
ma g nitud e o f tre a tme nt g a p a nd the d riving fo rc e s b e hind it.
Muhammad Akbar Malik*, Hamza Malik,
Muhammad Waseem Wali, Nadeem Shabbir and
Muhammad Saeed
The Brain Associates Institute, 218 D Model Town, Lahore, Pakistan
*Address for Correspondence
Muhammad Akbar Malik, Consultant Paediatric Neurologist, The Brain
Associates Institute, 218 D Model Town, Lahore, Pakistan, E-mail:
docmalikpk2000@yahoo.co.in
Submission: 24 November 2014
Accepted: 29 December 2014
Published: 03 January 2015
Reviewed & Approved by: Dr. Maromi Nei, Associate Professor,
Department of Neurology, Thomas Jefferson University Hospital, USA
Research Article Open Access
Journal of
Neurology and
Psychology
Avens Publishing Group
Invi ting Innovations
Introduction
Epilepsy is among one of the most common non communicable
diseases in the world and accounts for 0.5% of the whole disease
burden. Among 50 million people with epilepsy worldwide, 80% of
them are found in developing countries. Almost 80-90% of these
patients are not receiving adequate treatment [1]. Tis huge treatment
gap may be due to the limited knowledge, poverty, cultural beliefs,
stigma, poor health delivery infrastructure like inadequate supplies
of antiepileptic drugs and shortage of trained health care workers
[2,3]. Tis is even more worrisome considering the fact that incidence
of epilepsy is higher in the frst two decades of life in the frst two
decades of life [4]. Majority of persons with epilepsy live in low and
middle income countries (LMICs) and have limited access to efective
treatment [5].
Te resultant epilepsy treatment gap (ETG) has been defned as
‘the diference between the number of people with active epilepsy and
the number whose seizures are being appropriately treated in a given
population at a given point of time, expressed as percentage [6]. Tis
defnition includes diagnosis, poor data collection and documentation
of health statistics. Te weaknesses in the health systems of most
susceptible LMICs coupled with the stigma associated with epilepsy
make the estimation of CETG highly variable. It has been proposed as
an important parameter for access to care and quality of care across
health systems and paediatric population. Tere is an average gap of
approximately 85% for low- income countries [5-7]. Where available,
epilepsy care in low-income countries remains extremely basic and
antiepileptic drugs (AEDs) are delivered by nonphysician healthcare
workers who have no recourse to electroencephalography (EEG),
neuroimaging, serum–drug level monitoring or specialist referral
[8]. Most studies concerning ETG from the LMICs have focused
on entire populations [5,7]. For these and other programs to be
efective in bridging the ETG it is important to continually appraise
treatment of epilepsy among vulnerable populations, such as children
with epilepsy (CWE), in susceptible communities. Te magnitude of
epilepsy treatment gap in children and its causes is not well studied
in developing countries. Te limited amount of literature suggests
Abbreviations
CWE: Children with Epilepsy; CETG: Childhood Epilepsy
Treatment Gap; LMICs: Low and Middle Income Countries; RPCs:
Resource Poor Countries; AEDs: Antiepileptic Drugs; CHWs:
Community Health Workers
Copyright: © 2015 Malik MA, et al. This is an open access article
distributed under the Creative Commons Attribution License, which
permits unrestricted use, distribution, and reproduction in any medium,
provided the original work is properly cited.