title: Seizures in patients with primary brain tumors: what is their psychosocial impact?
abstract: Seizures occur in most patients with primary malignant tumors and are associated with poor quality of life. To our knowledge, no previous studies have sought descriptions of quality of life in patients' own words. Patients with a history of a malignant primary brain tumor and seizures participated in semi-structured interviews, which were analyzed with qualitative methodology. Twenty-seven patients participated, most with high grade brain tumors. Most were receiving anti-seizure medication. Three distinct themes emerged: (1) the first seizure as a sentinel event, as manifested in part by how patients described their first seizure in remarkable detail ("I clearly remember the date…"); (2) seizures as inextricably tied to the brain tumor itself; for example, one patient explained how he "always wondered what was happening with my brain tumor" with each seizure; and (3) adaptation and acceptance-or lack therefore-to seizures. With respect to this third theme, patients conveyed frustration from an inability to work, to drive, and to take care of their children ("It's like you are 15 all over again.") Others described frustration with taking antiseizure medications ("I felt like an 80 year old, now taking her pills every day"). However, some patients had adapted or resigned themselves ("…so much of life is out of control-you just gotta take what you get."). These findings have future research implications but should also serve to make healthcare providers more aware of the heavy emotional burden that seizures thrust upon brain tumor patients.
authors.affiliation: Department of Medicine, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors.forename: John Y
authors.initials: JY
authors.lastname: Shin
authors.affiliation: Department of Oncology, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors.forename: Sani H
authors.initials: SH
authors.lastname: Kizilbash
authors.affiliation: Department of Oncology, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors.forename: Steven I
authors.initials: SI
authors.lastname: Robinson
authors.affiliation: Department of Oncology, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.|Department of Neurology, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors.forename: Joon H
authors.initials: JH
authors.lastname: Uhm
authors.affiliation: Department of Neurology, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors.forename: Julie E
authors.initials: JE
authors.lastname: Hammack
authors.affiliation: Department of Neurology, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors.forename: Daniel H
authors.initials: DH
authors.lastname: Lachance
authors.affiliation: Department of Oncology, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA.
authors.forename: Jan C
authors.initials: JC
authors.lastname: Buckner
authors.affiliation: Department of Oncology, Mayo Clinic, 200 First Street SW, Rochester, MN, 55905, USA. jatoi.aminah@mayo.edu.
authors.forename: Aminah
authors.initials: A
authors.lastname: Jatoi
mesh_terms: D000328:Adult; D000368:Aged; D000927:Anticonvulsants / Q000627:therapeutic use; D001932:Brain Neoplasms / Q000150:complications* / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life; D012640:Seizures / Q000188:drug therapy / Q000209:etiology* / Q000523:psychology*
chemical_list: D000927:Anticonvulsants
keywords: Brain tumors; Qualitative; Quality of life; Seizures; Symptoms