Evidence map›Paper›PMID 25894906›Full record

ArticleEpilepsia2015

"A journey around the world": Parent narratives of the journey to pediatric resective epilepsy surgery and beyond.

Christine B Baca, Huibrie C Pieters, Tomoko J Iwaki, Gary W Mathern, Barbara G Vickrey

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Epilepsia, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

10 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Article
  4. Understanding and overcoming delays to pediatric epilepsy surgery: a scoping review.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2026
    Article
  5. Article
  6. Review
  7. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Christine B BacaDepartment of Neurology, University of California Los Angeles, Los Angeles, California, U.S.A.
Huibrie C PietersSchool of Nursing, University of California Los Angeles, Los Angeles, California, U.S.A.
Tomoko J IwakiSchool of Nursing, University of California Los Angeles, Los Angeles, California, U.S.A.
Gary W MathernDepartment of Neurosurgery, University of California Los Angeles, Los Angeles, California, U.S.A.
Barbara G VickreyDepartment of Neurology, University of California Los Angeles, Los Angeles, California, U.S.A.

Funding

PATHOPHYSIOLOGY OF DEVELOPING DYSPLASTIC HUMAN CORTEXR01NS038992 · NINDS · UNIVERSITY OF CALIFORNIA LOS ANGELES · PI CEPEDA, CARLOS T, MATHERN, GARY W. · 1999 to 2013
$3.3M
NINDS NIH HHS NINDS R01 NS38992NINDS NIH HHS R01 NS038992
6 · The paper itself

Abstract

objectiveAlthough shorter time to pediatric resective epilepsy surgery is strongly associated with greater disease severity, other nonclinical diagnostic and sociodemographic factors also play a role. We aimed to examine parent-reported barriers to timely receipt of pediatric epilepsy surgery.

methodsWe conducted 37 interviews of parents of children who previously had resective epilepsy surgery at University of California Los Angeles (UCLA; 2006-2011). Interviews were audio-recorded, transcribed, and systematically coded using thematic analysis by two independent coders, and subsequently checked for agreement. Clinical data, including "time to surgery" (age of epilepsy onset to surgery) were abstracted from medical records.

resultsThe mean time to surgery was 5.3 years (standard deviation [SD] 3.8); surgery types included 32% hemispherectomy, 43% lobar/focal, and 24% multilobar. At surgery, parents were on average 38.4 years (SD 6.6) and children were on average 8.2 years (SD 4.7). The more arduous and longer aspect of the journey to surgery was perceived by parents to be experienced prior to presurgical referral. The time from second antiepileptic drug failure to presurgical referral was ≥ 1 year in 64% of children. Thematic analysis revealed four themes (with subthemes) along the journey to surgery and beyond: (1) recognition--"something is wrong" (unfamiliarity with epilepsy, identification of medical emergency); (2) searching and finding--"a circuitous journey" (information seeking, finding the right doctors, multiple medications, insurance obstacles, parental stress); (3) surgery is a viable option--"the right spot" (surgery as last resort, surgery as best option, hoping for candidacy); and (4) life now--"we took the steps we needed to" (a new life, giving back). SIGNIFICANCE: Multipronged interventions targeting parent-, provider-, and system-based barriers should focus on the critical presurgical referral period; such interventions are needed to remediate delays and improve access to subspecialty care for children with medically refractory epilepsy and potentially eligible for surgery.

Indexed as

AdolescentAdultChildChild, PreschoolEpilepsyFemaleHumansMaleMiddle AgedNeurosurgeryParent-Child RelationsParentsReferral and ConsultationStress, PsychologicalTime FactorsAccess to careEpilepsy surgeryParentPediatric

Identifiers

PMID25894906
PMCPMC4457674

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.