title: Parent and family stress factors predict health-related quality in pediatric patients with new-onset epilepsy.
abstract: OBJECTIVE
  To examine the influence of parent and family general and epilepsy-related stress on longitudinal generic and epilepsy-specific health-related quality of life (HRQOL) for children with new-onset epilepsy, while controlling for demographic characteristics, disease factors, and antiepileptic drug (AED) adherence.
  
  
  METHODS
  This prospective, longitudinal study included 124 children with new-onset epilepsy (mean age 7.2 years, standard deviation [SD] 2.9 years). Parents completed questionnaires on parenting stress, perceived stigma, fears and concerns, and HRQOL at 1, 13, and 25 months after diagnosis. Adherence to AEDs was assessed using electronic monitors. A medical chart review was conducted at each visit to obtain seizure and side effect data.
  
  
  RESULTS
  Higher levels of general and epilepsy-specific parent and family stress, fears and concerns, and perceived stigma negatively affected child generic and epilepsy-specific HRQOL, above and beyond disease and demographic factors. General parenting and family stress affected child generic and epilepsy-specific HRQOL more in the first year of disease management than at 2 years after diagnosis. Higher fears and concerns predicted higher epilepsy-specific HRQOL at 13 months postdiagnosis, whereas 2 years postdiagnosis, higher fears and concerns predicted lower epilepsy-specific HRQOL. Several demographic (i.e., age) and disease-related variables (i.e., side effects and AED adherence) influenced child generic and epilepsy-specific HRQOL. Although some findings were consistent across generic and epilepsy-specific HRQOL measures, others were unique.
  
  
  CONCLUSIONS
  Modifiable parent factors (i.e., general and disease-specific parent and family stress, perceived stigma) impact HRQOL for children with new-onset epilepsy differently over the first 2 years postdiagnosis. Psychosocial interventions to improve HRQOL within the first year postdiagnosis should address parenting and family stress, overall coping, and anticipatory guidance on managing epilepsy. Interventions targeting adherence, perceived stigma, and fears and concerns could improve HRQOL. Promoting parent management of stress, fears/concerns, and perceived stigma may lead to improved child HRQOL outcomes. A PowerPoint slide summarizing this article is available for download in the Supporting Information section here.
authors.affiliation: Division of Behavioral Medicine and Clinical Psychology, Center for Treatment Adherence and Self-Management, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, U.S.A.
authors.forename: Yelena P
authors.initials: YP
authors.lastname: Wu
authors.forename: Katherine
authors.initials: K
authors.lastname: Follansbee-Junger
authors.forename: Joseph
authors.initials: J
authors.lastname: Rausch
authors.forename: Avani
authors.initials: A
authors.lastname: Modi
mesh_terms: D002648:Child; D004827:Epilepsy / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology*; D013240:Stereotyping; D013315:Stress, Psychological / Q000209:etiology* / Q000523:psychology; D011795:Surveys and Questionnaires; D013997:Time Factors
keywords: Adherence; Patient-reported outcome; Psychosocial functioning; Side effects; Stigma; Stress