title: Development of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI).
abstract: Epilepsy self-management is the total sum of steps that people perform to maximize seizure control, to minimize the impact of having a seizure disorder, and to maximize quality of life. As part of a phased approach to instrument development, we conducted descriptive analyses of data from epilepsy self-management items covering 10 domains of self-management gathered from 422 adults with epilepsy from multiple study sites. Participants most frequently reported performing sets of behaviors related to managing treatment and stigma, information seeking, managing symptoms, and communicating with providers. Behaviors reported with lower frequency were related to seeking social support and engaging in wellness behaviors. Significant differences for the domains were found for income, gender, and education levels but not for other different demographic variables. A subsequent analytic phase, reported in a companion article, will use factor analysis to identify and validate the subscale structure of the domains.
authors: Rollins School of Public Health, Emory University, 1518 Clifton Rd., Atlanta, GA 30322, USA. Electronic address: cescoff@sph.emory.edu.
authors: Cam
authors: C
authors: Escoffery
authors: Rollins School of Public Health, Emory University, 1518 Clifton Rd., Atlanta, GA 30322, USA.
authors: Yvan
authors: Y
authors: Bamps
authors: Rhode Island Hospital, Brown University, 593 Eddy St., Providence, RI 02903, USA.
authors: W Curt
authors: WC
authors: LaFrance
authors: University of Michigan, 1415 Washington Heights, Ann Arbor, MI 48109-2029, USA.
authors: Shelley
authors: S
authors: Stoll
authors: University of Texas School of Public Health, 7000 Fannin St., Suite 2668, Houston, TX 77030, USA.
authors: Ross
authors: R
authors: Shegog
authors: The Epilepsy Foundation, 8301 Professional Place, Landover, MD 20785-2353, USA.
authors: Janice
authors: J
authors: Buelow
authors: Beth Israel Deaconess Medical Center, 330 Brookline Avenue, Boston, MA 02215, USA.
authors: Patricia
authors: P
authors: Shafer
authors: Rollins School of Public Health, Emory University, 1518 Clifton Rd., Atlanta, GA 30322, USA.
authors: Nancy J
authors: NJ
authors: Thompson
authors: Rollins School of Public Health, Emory University, 1518 Clifton Rd., Atlanta, GA 30322, USA.
authors: Robin E
authors: RE
authors: McGee
authors: Rollins School of Public Health, Emory University, 1518 Clifton Rd., Atlanta, GA 30322, USA.
authors: Katherine
authors: K
authors: Hatfield
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D019468:Disease Management; D004827:Epilepsy / Q000523:psychology* / Q000628:therapy*; D005260:Female; D015438:Health Behavior; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D012648:Self Care / Q000379:methods / Q000523:psychology* / Q000639:trends*; D057545:Social Stigma; D012944:Social Support; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Adherence; Behavioral measurement; Epilepsy self-management; Seizure disorder