Illness identity in young adults with refractory epilepsy

Koen Luyckx*, Leen Oris, Koen Raymaekers, Jessica Rassart, Philip Moons, Ludo Verdyck, Teus Mijnster, R.E. Mark

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

3 Citations (Scopus)

Abstract

Introduction:
Refractory epilepsy is an intrusive condition with important implications for daily functioning in emerging and young adulthood. The present study examined the degree to which refractory epilepsy is integrated in one's identity, and examined how such a sense of illness identity was related to health-related quality of life (HRQOL).

Methods:
A total of 121 18- to 40-year-old patients with refractory epilepsy (56.2% women) completed self report questionnaires assessing the four illness identity states of acceptance, enrichment, engulfment, and rejection (Illness Identity Questionnaire (IIQ)); HRQOL (Quality of Life in Epilepsy Inventory – 31); and seizure frequency and severity (Liverpool Seizure Severity Scale (LSSS)). Illness identity scores were compared with a sample of 191 patients with a non neurological chronic disease (congenital heart disease). Hierarchical regression analyses were conducted to assess the predictive value of illness identity for HRQOL when simultaneously controlling for demographic and clinical features.

Results:
Patients with refractory epilepsy scored higher on rejection and engulfment and lower on acceptance when compared with patients with congenital heart disease. Further, seizure severity and number of medication
side-effects were positively related to engulfment and negatively to acceptance. Finally, when simultaneously controlling for various demographic and clinical variables, illness identity significantly predicted HRQOL (with engulfment being the strongest and most consistent predictor).

Conclusion:
The extent to which patients with refractory epilepsy succeed in integrating their illness into their identity may have important implications for HRQOL. Clinicians should be especially attentive for signs that patients feel engulfed by their epilepsy.
Original languageEnglish
Pages (from-to)48-55
JournalEpilepsy & Behavior
Volume80
DOIs
Publication statusPublished - 2018

Keywords

  • Emerging adulthood
  • Refractory epilepsy
  • Illness identity
  • Acceptance
  • Health-related quality of life
  • Sense of self
  • QUALITY-OF-LIFE
  • CONGENITAL HEART-DISEASE
  • SEIZURE SEVERITY SCALE
  • SELF-CONCEPT
  • EMERGING ADULTHOOD
  • THE-LITERATURE
  • ADOLESCENTS
  • HEALTH
  • PEOPLE
  • IMPACT

Fingerprint Dive into the research topics of 'Illness identity in young adults with refractory epilepsy'. Together they form a unique fingerprint.

Cite this