Measures for improving treatment outcomes for patients with epilepsy--results from a large multinational patient-physician survey - PubMed

Measures for improving treatment outcomes for patients with epilepsy--results from a large multinational patient-physician survey

André Groenewegen et al. Epilepsy Behav. 2014 May.

Free article

Abstract

In this large-scale, multinational, descriptive survey, we sought to identify measures for improving treatment outcomes for individuals with epilepsy. As a framework, questions relating specifically to each of the five steps of the 'patient-physician journey', namely, patient identification (omitted in this survey), diagnosis, choice of drug, disease and drug information, and patient monitoring were asked. Overall, 337 physicians and 1150 patients across France, Germany, and the United States returned questionnaires. Results indicated that 16% of the patients were initially misdiagnosed. Treatment choice was driven by efficacy, safety, experience with a drug (physician only), and convenience (patient only). Physicians were identified as the primary source of information for patients, and, as expected, better informed patients were found to adhere better to their therapy than those who were less well informed. Approximately 50% of the patients had not seen their specialist in the last year, which indicates poor follow-up; furthermore, important topics such as seizures, treatment, and its side effects were not discussed at every visit. Specialists, but not primary care practitioners (PCPs), consistently reported discussing all topics more frequently than their patients, suggesting that specialists may overestimate the clarity of their questions. There was also substantial disparity in the reasons cited for nonadherence - patients overwhelmingly cited forgetfulness, while both PCPs and specialists cited complacency, forgetfulness, and tolerability. We also noted a disparity between physicians and their patients, as well as between PCPs and specialists, in their views on the impact of epilepsy on patients' lives. Our results indicate multiple opportunities to intervene at all stages of the patient-physician journey to improve treatment outcomes. We provide practical suggestions to achieve the most from these opportunities.

Keywords: Diagnosis; Epilepsy; Follow-up; Patient–physician; Survey; Treatment.

Similar articles

• Physician management of moderate-to-severe acute pain: results from the Physicians Partnering Against Pain (P³) study.

  McCarberg BH, Patel AA, Benson CJ, Mody SH, Chow W, Zema CL, Vorsanger GJ, Kim MS. McCarberg BH, et al. J Opioid Manag. 2013 Nov-Dec;9(6):401-6. doi: 10.5055/jom.2013.0182. J Opioid Manag. 2013. PMID: 24481928

• How will primary care physicians, specialists, and managed care treat epilepsy in the new millennium?

  Montouris GD. Montouris GD. Neurology. 2000;55(11 Suppl 3):S42-4. Neurology. 2000. PMID: 11147568 Review.

• Policy versus practice: comparison of prescribing therapy and durable medical equipment in medical and educational settings.

  Sneed RC, May WL, Stencel C. Sneed RC, et al. Pediatrics. 2004 Nov;114(5):e612-25. doi: 10.1542/peds.2004-1063. Pediatrics. 2004. PMID: 15520092

• National Ambulatory Medical Care Survey: 2001 summary.

  Cherry DK, Burt CW, Woodwell DA. Cherry DK, et al. Adv Data. 2003 Aug 11;(337):1-44. Adv Data. 2003. PMID: 12924075

• The impact of epilepsy on patients' lives.

  Kerr MP. Kerr MP. Acta Neurol Scand Suppl. 2012;(194):1-9. doi: 10.1111/ane.12014. Acta Neurol Scand Suppl. 2012. PMID: 23106520 Review.

Cited by

• Non-Adherence to Anti-Epileptic Drugs and Associated Factors among Epileptic Patients in Dessie Town Public Hospitals, Northeast Ethiopia.

  Abebaw N, Girma N, Yasin M. Abebaw N, et al. J Epilepsy Res. 2021 Jun 30;11(1):39-48. doi: 10.14581/jer.21006. eCollection 2021 Jun. J Epilepsy Res. 2021. PMID: 34395222 Free PMC article.

• Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods.

  Lewinski AA, Shapiro A, Gierisch JM, Goldstein KM, Blalock DV, Luedke MW, Gordon AM, Bosworth HB, Drake C, Lewis JD, Sinha SR, Husain AM, Tran TT, Van Noord MG, Williams JW Jr. Lewinski AA, et al. Syst Rev. 2020 Apr 25;9(1):92. doi: 10.1186/s13643-020-01322-9. Syst Rev. 2020. PMID: 32334641 Free PMC article.

• Managing drug-resistant epilepsy: challenges and solutions.

  Dalic L, Cook MJ. Dalic L, et al. Neuropsychiatr Dis Treat. 2016 Oct 12;12:2605-2616. doi: 10.2147/NDT.S84852. eCollection 2016. Neuropsychiatr Dis Treat. 2016. PMID: 27789949 Free PMC article. Review.

• Development of an Epilepsy Nursing Communication Tool: Improving the Quality of Interactions Between Nurses and Patients With Seizures.

  Buelow J, Miller W, Fishman J. Buelow J, et al. J Neurosci Nurs. 2018 Apr;50(2):74-80. doi: 10.1097/JNN.0000000000000353. J Neurosci Nurs. 2018. PMID: 29505437 Free PMC article.

• The treatment outcomes of epilepsy and its root causes in children attending at the University of Gondar teaching hospital: A retrospective cohort study, 2018.

  Beyene A, Ayalew AF, Mulat G, Simachew Kassa A, Birhan T. Beyene A, et al. PLoS One. 2020 Mar 12;15(3):e0230187. doi: 10.1371/journal.pone.0230187. eCollection 2020. PLoS One. 2020. PMID: 32163504 Free PMC article.

Publication types

MeSH terms

Substances

LinkOut - more resources

• Full Text Sources

  • ClinicalKey
  • Elsevier Science

• Other Literature Sources

  • scite Smart Citations

• Medical

  • MedlinePlus Consumer Health Information
  • MedlinePlus Health Information

• Research Materials

  • NCI CPTC Antibody Characterization Program