Skip to main content
Log in

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

  • Original Communication
  • Published:
Journal of Neurology Aims and scope Submit manuscript

Abstract

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

References

  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. https://doi.org/10.15585/mmwr.mm6631a1

    Article  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2016.12.005

    Article  PubMed  PubMed Central  Google Scholar 

  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. https://doi.org/10.1007/s00415-017-8512-1

    Article  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2015.01.026

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1111/j.1528-1167.2010.02775.x

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2014.08.002

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2012.02.003

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1111/j.1528-1167.2011.03325.x

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2008.07.005

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2015.04.051

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2015.08.023

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1111/j.1528-1157.1999.tb02078.x

    Article  CAS  PubMed  Google Scholar 

  13. Bautista RED (2017) Understanding the self-management skills of persons with epilepsy. Epilepsy Behav 69:7–11. https://doi.org/10.1016/j.yebeh.2016.11.022

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2012.07.020

    Article  PubMed  Google Scholar 

  15. Schmidt SS Clinical Research Protocol. 25

  16. Di Iorio C (1997) Epilepsy Self-Management. In: Gochman DS (ed) Handbook of health behavior research II. Springer, US, Boston, MA, pp 213–230

    Chapter  Google Scholar 

  17. Begley C, Shegog R, Liu H et al (2018) Correlates of epilepsy self-management in MEW network participants. Epilepsy Behav 85:243–247. https://doi.org/10.1016/j.yebeh.2018.04.011

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1093/her/cyn012

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2011.12.023

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1111/j.1528-1157.1998.tb01278.x

    Article  CAS  PubMed  Google Scholar 

  21. Devinsky O, Vickrey BG, Cramer J et al (1995) Development of the quality of life in epilepsy inventory. Epilepsia 36:1089–1104. https://doi.org/10.1111/j.1528-1157.1995.tb00467.x

    Article  CAS  PubMed  Google Scholar 

  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. https://doi.org/10.1046/j.1525-1497.2001.016009606.x

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  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. https://doi.org/10.1503/cmaj.110829

    Article  Google Scholar 

  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. https://doi.org/10.1111/epi.13651

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2015.07.026

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2016.11.015

    Article  PubMed  PubMed Central  Google Scholar 

  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. https://doi.org/10.1016/j.seizure.2012.11.012

    Article  PubMed  Google Scholar 

  28. McCagh J (2014) Quality of Life Issues in Epilepsy. In: Holmes MD (ed) Epilepsy Topics. InTech

  29. Robinson E, DiIorio C, DePadilla L et al (2008) Psychosocial predictors of lifestyle management in adults with epilepsy. Epilepsy Behav 13:523–528. https://doi.org/10.1016/j.yebeh.2008.05.015

    Article  PubMed  PubMed Central  Google Scholar 

  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. https://doi.org/10.3988/jcn.2018.14.2.206

    Article  PubMed  PubMed Central  Google Scholar 

  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. https://doi.org/10.1111/pcn.12499

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1111/j.0013-9580.2004.47003.x

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.seizure.2008.11.010

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2006.07.014

    Article  PubMed  Google Scholar 

  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. https://doi.org/10.1212/01.wnl.0000242582.83632.73

    Article  CAS  PubMed  Google Scholar 

  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. https://doi.org/10.1016/j.yebeh.2018.06.025

    Article  Google Scholar 

  37. Fraser RT, Johnson EK, Miller JW et al (2011) Managing epilepsy well: Self-management needs assessment. Epilepsy Behav 20:291–298. https://doi.org/10.1016/j.yebeh.2010.10.010

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

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.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Robert Quon.

Ethics declarations

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.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 26108 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Quon, R., Andrew, A., Schmidt, S. et al. Self-management practices associated with quality of life for adults with epilepsy. J Neurol 266, 2821–2828 (2019). https://doi.org/10.1007/s00415-019-09503-w

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00415-019-09503-w

Keywords

Navigation