Self-management practices associated with quality of life for adults with epilepsy

  • Robert QuonEmail author
  • Angeline Andrew
  • Samantha Schmidt
  • Cam Escoffery
  • Lindsay Schommer
  • Felicia Chu
  • Heidi Henninger
  • Keith Nagle
  • Nicholas Streltzov
  • Barbara Jobst
Original Communication


Epilepsy self-management practices enhance a patient’s competence and confidence in managing their chronic condition, which is assumed to lead to an improved quality of life (QoL). We analyzed the relationship between the Epilepsy Self-Management Scale (ESMS) responses and the Quality of Life in Epilepsy (QOLIE-31) scores. Baseline questionnaires from HOBSCOTCH, a self-management program for cognitive problems, were administered in four New England epilepsy centers on adults (n = 100) with epilepsy and subjective memory complaints. There was no correlation between overall self-management scores and overall quality-of-life scores; however, subscale analyses indicated that certain self-management practices were strongly correlated with the overall QOLIE-31 score. Specifically, improved ESMS lifestyle management was associated with an increased quality-of-life score (adjusted p < 0.01), while enhanced ESMS safety management practices were associated with a decreased overall quality-of-life score (adjusted p < 0.01). Our item-level analysis highlighted specific items within the ESMS safety management, ESMS lifestyle management, and ESMS information management subdomains that were significant predictors for QoL. Depression was also shown to be significantly correlated with the QOLIE-31 (p < 0.01). Our study suggests that an overemphasis on safety practices may negatively affect quality of life, while enhanced lifestyle management has positive effects. Furthermore, our finding that quality of life is greatly dependent on depressive symptoms underscores the importance of treating depression in epilepsy.


Epilepsy Self-management Quality of life Depression Determinants 



This project was funded by the Centers for Disease Control and Prevention (CDC) and was supported by special interest project SIP 14-006, Cooperative Agreement Number: 1U48DP005018. We are grateful to the patients who participated in this study, and for our colleagues involved with HOBSCOTCH [19]. Funding was also provided by the NIH Quantitative Biomedical Sciences at Dartmouth training grant: 05-T32LM012204-03.

Compliance with ethical standards

Conflicts of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Ethical Standards

The Committee for the Protection of Human Subjects (CPHS) at Dartmouth College has approved this study (CPHS#: 23708). Approval by CPHS was based on the study’s appropriate balance of risk and benefit to subjects and a study design in which risks to subjects are minimized. The review was also performed by the Institutional Review Board (IRB), which oversaw that the study satisfied the human subjects protection requirements of the Federal-wide Assurance (FWA) for the Relying Entity (FWA#: 00003095). Thus, all human studies were performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. Specific national laws were also observed. Informed consent was obtained for all subjects prior to their inclusion in the study, and all details that might disclose the identity of the subjects under study were omitted.

Supplementary material

415_2019_9503_MOESM1_ESM.docx (25.5 mb)
Supplementary file1 (DOCX 26108 kb)


  1. 1.
    Zack MM, Kobau R (2017) National and State Estimates of the Numbers of Adults and Children with Active Epilepsy—United States, 2015. MMWR Morb Mortal Wkly Rep 66:821–825.
  2. 2.
    Sajatovic M, Tatsuoka C, Welter E et al (2017) Correlates of quality of life among individuals with epilepsy enrolled in self-management research. Epilepsy Behav 69:177–180. CrossRefGoogle Scholar
  3. 3.
    Team SMILE, Ridsdale L, Wojewodka G et al (2017) Characteristics associated with quality of life among people with drug-resistant epilepsy. J Neurol 264:1174–1184. CrossRefGoogle Scholar
  4. 4.
    Edward K, Cook M, Giandinoto J-A (2015) An integrative review of the benefits of self-management interventions for adults with epilepsy. Epilepsy Behav 45:195–204. CrossRefGoogle Scholar
  5. 5.
    Taylor J, Jacoby A, Baker GA et al (2011) Factors predictive of resilience and vulnerability in new-onset epilepsy: resilience in new-onset epilepsy. Epilepsia 52:610–618. CrossRefGoogle Scholar
  6. 6.
    Kobau R, Cui W, Kadima N et al (2014) Tracking psychosocial health in adults with epilepsy—estimates from the 2010 National Health Interview Survey. Epilepsy Behav 41:66–73. CrossRefGoogle Scholar
  7. 7.
    Chung K, Liu Y, Ivey SL et al (2012) Quality of life in epilepsy (QOLIE): Insights about epilepsy and support groups from people with epilepsy (San Francisco Bay Area, USA). Epilepsy Behav 24:256–263. CrossRefGoogle Scholar
  8. 8.
    Luoni C, Bisulli F, Canevini MP et al (2011) Determinants of health-related quality of life in pharmacoresistant epilepsy: results from a large multicenter study of consecutively enrolled patients using validated quantitative assessments: Quality of Life in Pharmacoresistant Epilepsy. Epilepsia 52:2181–2191. CrossRefGoogle Scholar
  9. 9.
    McAuley JW, McFadden LS, Elliott JO, Shneker BF (2008) An evaluation of self-management behaviors and medication adherence in patients with epilepsy. Epilepsy Behav 13:637–641. CrossRefGoogle Scholar
  10. 10.
    Yadegary MA, Maemodan FG, Nayeri ND, Ghanjekhanlo A (2015) The effect of self-management training on health-related quality of life in patients with epilepsy. Epilepsy Behav 50:108–112. CrossRefGoogle Scholar
  11. 11.
    Laybourne AH, Morgan M, Watkins SH et al (2015) Self-management for people with poorly controlled epilepsy: Participants’ views of the UK Self-Management in epILEpsy (SMILE) program. Epilepsy Behav 52:159–164. CrossRefGoogle Scholar
  12. 12.
    Amir M, Roziner I, Knoll A, Neufeld MY (1999) Self-efficacy and social support as mediators in the relation between disease severity and quality of life in patients with epilepsy. Epilepsia 40:216–224. CrossRefGoogle Scholar
  13. 13.
    Bautista RED (2017) Understanding the self-management skills of persons with epilepsy. Epilepsy Behav 69:7–11. CrossRefGoogle Scholar
  14. 14.
    Johnson EK, Fraser RT, Miller JW et al (2012) A comparison of epilepsy self-management needs: Provider and patient perspectives. Epilepsy Behav 25:150–155. CrossRefGoogle Scholar
  15. 15.
    Schmidt SS Clinical Research Protocol. 25Google Scholar
  16. 16.
    Di Iorio C (1997) Epilepsy Self-Management. In: Gochman DS (ed) Handbook of health behavior research II. Springer, US, Boston, MA, pp 213–230CrossRefGoogle Scholar
  17. 17.
    Begley C, Shegog R, Liu H et al (2018) Correlates of epilepsy self-management in MEW network participants. Epilepsy Behav 85:243–247. CrossRefGoogle Scholar
  18. 18.
    DiIorio C, Escoffery C, McCarty F et al (2008) Evaluation of WebEase: an epilepsy self-management Web site. Health Educ Res 24:185–197. CrossRefGoogle Scholar
  19. 19.
    Borghs S, de la Loge C, Cramer JA (2012) Defining minimally important change in QOLIE-31 scores: Estimates from three placebo-controlled lacosamide trials in patients with partial-onset seizures. Epilepsy Behav 23:230–234. CrossRefGoogle Scholar
  20. 20.
    Cramer JA, Perrine K, Devinsky O et al (1998) Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory. Epilepsia 39:81–88. CrossRefGoogle Scholar
  21. 21.
    Devinsky O, Vickrey BG, Cramer J et al (1995) Development of the quality of life in epilepsy inventory. Epilepsia 36:1089–1104. CrossRefGoogle Scholar
  22. 22.
    Kroenke K, Spitzer RL, Williams JBW (2001) The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 16:606–613. CrossRefGoogle Scholar
  23. 23.
    Manea L, Gilbody S, McMillan D (2012) Optimal cut-off score for diagnosing depression with the Patient Health Questionnaire (PHQ-9): a meta-analysis. Can Med Assoc J 184:E191–E196. CrossRefGoogle Scholar
  24. 24.
    Gill SJ, Lukmanji S, Fiest KM et al (2017) Depression screening tools in persons with epilepsy: A systematic review of validated tools. Epilepsia 58:695–705. CrossRefGoogle Scholar
  25. 25.
    Escoffery C, Bamps Y, LaFrance WC et al (2015) Factor analyses of an adult epilepsy self-management measurement instrument (AESMMI). Epilepsy Behav 50:184–189. CrossRefGoogle Scholar
  26. 26.
    Helmers SL, Kobau R, Sajatovic M et al (2017) Self-management in epilepsy: Why and how you should incorporate self-management in your practice. Epilepsy Behav 68:220–224. CrossRefGoogle Scholar
  27. 27.
    Mahrer-Imhof R, Jaggi S, Bonomo A et al (2013) Quality of life in adult patients with epilepsy and their family members. Seizure 22:128–135. CrossRefGoogle Scholar
  28. 28.
    McCagh J (2014) Quality of Life Issues in Epilepsy. In: Holmes MD (ed) Epilepsy Topics. InTechGoogle Scholar
  29. 29.
    Robinson E, DiIorio C, DePadilla L et al (2008) Psychosocial predictors of lifestyle management in adults with epilepsy. Epilepsy Behav 13:523–528. CrossRefGoogle Scholar
  30. 30.
    Chen E, Sajatovic M, Liu H et al (2018) Demographic and clinical correlates of seizure frequency: findings from the managing epilepsy well network database. J Clin Neurol 14:206. CrossRefGoogle Scholar
  31. 31.
    Ertem DH, Dirican AC, Aydın A et al (2017) Exploring psychiatric comorbidities and their effects on quality of life in patients with temporal lobe epilepsy and juvenile myoclonic epilepsy: psychiatric comorbidity in epilepsy. Psychiatry Clin Neurosci 71:280–288. CrossRefGoogle Scholar
  32. 32.
    Johnson EK, Jones JE, Seidenberg M, Hermann BP (2004) The relative impact of anxiety, depression, and clinical seizure features on health-related quality of life in epilepsy. Epilepsia 45:544–550. CrossRefGoogle Scholar
  33. 33.
    Meneses RF, Pais-Ribeiro JL, da Silva AM, Giovagnoli AR (2009) Neuropsychological predictors of quality of life in focal epilepsy. Seizure 18:313–319. CrossRefGoogle Scholar
  34. 34.
    Pulsipher DT, Seidenberg M, Jones J, Hermann B (2006) Quality of life and comorbid medical and psychiatric conditions in temporal lobe epilepsy. Epilepsy Behav 9:510–514. CrossRefGoogle Scholar
  35. 35.
    Tracy JI, Dechant V, Sperling MR et al (2007) The association of mood with quality of life ratings in epilepsy. Neurology 68:1101–1107. CrossRefGoogle Scholar
  36. 36.
    Chen Y, Huang S, Wu W, et al (2018) Associated and predictive factors of quality of life in patients with temporal lobe epilepsy. Epilepsy Behav.
  37. 37.
    Fraser RT, Johnson EK, Miller JW et al (2011) Managing epilepsy well: Self-management needs assessment. Epilepsy Behav 20:291–298. CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  • Robert Quon
    • 1
    Email author
  • Angeline Andrew
    • 2
    • 3
  • Samantha Schmidt
    • 3
  • Cam Escoffery
    • 4
  • Lindsay Schommer
    • 3
  • Felicia Chu
    • 5
  • Heidi Henninger
    • 6
  • Keith Nagle
    • 7
  • Nicholas Streltzov
    • 8
  • Barbara Jobst
    • 1
    • 3
  1. 1.Department of NeurologyGeisel School of Medicine At DartmouthLebanonUSA
  2. 2.Department of EpidemiologyGeisel School of MedicineHanoverUSA
  3. 3.Department of NeurologyDartmouth-Hitchcock Medical CenterLebanonUSA
  4. 4.Department of Behavioral Sciences and Health EducationEmory UniversityAtlantaUSA
  5. 5.Department of NeurologyUniversity of Massachusetts Memorial Medical CenterWorcesterUSA
  6. 6.Department of NeurologyMaine Medical CenterScarboroughUSA
  7. 7.Department of Neurological SciencesUniversity of Vermont College of MedicineBurlingtonUSA
  8. 8.Geisel School of Medicine At DartmouthLebanonUSA

Personalised recommendations