A modified Delphi study to determine the contents of a seizure diary for patients living with epilepsy in South Africa


  • Chika Kennedy Egenasi Department of Family Medicine, School of Clinical Medicine, Faculty of Health Sciences, University of the Free State, Bloemfontein https://orcid.org/0000-0001-5555-7779
  • Anandan Angamuthu Moodley Department of Neurology, Faculty of Health Sciences, University of Kwazulu-Natal, Durban https://orcid.org/0000-0002-8205-9342
  • Wilhelm Johannes Steinberg Department of Family Medicine, School of Clinical Medicine, Faculty of Health Sciences, University of the Free State, Bloemfontein https://orcid.org/0000-0001-9944-1807
  • Gina Joubert Department of Biostatistics, School of Biomedical Sciences, Faculty of Health Sciences, University of the Free State, Bloemfontein https://orcid.org/0000-0002-3728-6925




seizure diary, epilepsy, paper diary, electronic diary, expert panel, consensus, delphi method, South Africa


Background. Epilepsy is a debilitating chronic medical condition affecting many patients globally. A seizure diary is used in monitoring and managing patients with epilepsy. In South Africa, no standardized diary is currently being used. Objective. This study intended to develop a consensus among experts managing patients with epilepsy on the content of a seizure diary. Methods. The modified Delphi method consisted of three survey rounds spanning six months. Using a three-point Likert scale questionnaire, in round one, the panelists were required to choose an option (definitely required, optional, and not required) for 50 items and comment on the contents of the diary. In round two, three items were added based on comments from the panelists. In round three, panelists were allowed to deliberate further on unresolved items and change their responses in view of the group responses. The consensus was determined as an a priori threshold of >70% on items definitely required, optional, or not required. Results. Eleven local and two international panelists were enrolled in this study. Twelve completed all three rounds. The consensus was achieved in 21 of 50 items in round 1, three of seven items in round 2, and one of two items in round 3, of which 18 were definitely required as contents of a seizure diary. Conclusions. Based on expert opinions, the modified Delphi study determined the essential contents of a seizure diary for use by patients with epilepsy in South Africa.

Download data is not yet available.

Author Biographies

Chika Kennedy Egenasi, Department of Family Medicine, School of Clinical Medicine, Faculty of Health Sciences, University of the Free State, Bloemfontein

Senior Lecturer/ Family Physician

M Fam Med UFS, Dip Clin For Med UFS

Anandan Angamuthu Moodley, Department of Neurology, Faculty of Health Sciences, University of Kwazulu-Natal, Durban

Associate Professor/Fellow Physician - Neurology

FCP Neurol (SA), M.HPE (UFS), FEBN (EU), PhD (UKZN)

Wilhelm Johannes Steinberg, Department of Family Medicine, School of Clinical Medicine, Faculty of Health Sciences, University of the Free State, Bloemfontein

Associate Professor/Principal Family Physician

DTM+H, DPH, PG Dip Obst (SA), M Fam Med (UFS), FCFP

Gina Joubert, Department of Biostatistics, School of Biomedical Sciences, Faculty of Health Sciences, University of the Free State, Bloemfontein

Associate Professor/Biostatistician



World Health Organization. Epilepsy. Facts about Epilepsy. 2019 [cited 2021 Feb 17]. Available from: https://www.who.int/news-room/fact-sheets/detail/epilepsy

World Health Organization. Epilepsy in the WHO African region: Bridging the Gap. World Health Organization. 2004 [cited 2021 Feb 17]. Available from: https://www.ecoi.net/en/file/local/1320358/432_1198069054_epilepsy-in-african-region.pdf

Epilepsy South Africa. Facts About Epilepsy [Internet]. http://www.epilepsy.org.za. 2004 [cited 2023 Jan 11]. Available from: https://epilepsy.org.za/content/uploads/2020/07/002-Brochure-Facts-about-Epilepsy.pdf

Fisher RS. Tracking epilepsy with an electronic diary. Acta Paediatr. 2010; 99(4):516–8. https://doi.org/10.1111/j.1651-2227.2010.01694 DOI: https://doi.org/10.1111/j.1651-2227.2010.01694.x

Fisher RS, Acevedo C, Arzimanoglou A, et al. ILAE Official Report: A practical clinical definition of epilepsy. Epilepsia. 2014;55(4):475–82. https://doi.org/10.1111/epi.12550 DOI: https://doi.org/10.1111/epi.12550

Ernst LL, Harden CL, Pennell PB, et al. Medication adherence in women with epilepsy who are planning pregnancy. Epilepsia. 2016;57(12):2039–44. https://doi.org/10.1111/epi.13586 DOI: https://doi.org/10.1111/epi.13586

Shafer PO, Fisher R, Schachter SC. Using Seizure Diaries [Internet]. Epilepsy Foundation. 2019 [cited 2020 Jul 11]. Available from: https://www.epilepsy.com/manage/tracking/seizure-diaries

Le S, Shafer PO, Bartfeld E, Fisher RS. An online diary for tracking epilepsy. Epilepsy Behav. 2011 Dec 1;22(4):705–9. https://doi.org/10.1016/j.yebeh.2011.08.035 DOI: https://doi.org/10.1016/j.yebeh.2011.08.035

Ohly S, Sonnentag S, Niessen C, Zapf D. Diary Studies in Organizational Research. Journal of Personnel Psychology. 2010;9(2):79–93. https://doi.org/10.1027/1866-5888/a000009 DOI: https://doi.org/10.1027/1866-5888/a000009

Chin JH. Epilepsy treatment in sub-Saharan Africa: closing the gap. Afr Health Sci. 2012;12(2):186–92. https://doi.org/10.4314/ahs.v12i2.17 DOI: https://doi.org/10.4314/ahs.v12i2.17

Egenasi CK, Moodley AA, Steinberg WJ, Adefuye AO. Current norms and practices in using a seizure diary for managing epilepsy: A scoping review. S Afr Fam Pract. 2022;64(1),a5540. https://doi.org/10.4102/safp.v64i1.5540 DOI: https://doi.org/10.4102/safp.v64i1.5540

Keikelame MJ, Swartz L. Lost opportunities to improve health literacy: observations in a chronic illness clinic providing care for patients with epilepsy in Cape Town South Africa. Epilepsy Behav. 2013;26(1):36–41. https://doi.org/10.1016/j.yebeh.2012.10.015 DOI: https://doi.org/10.1016/j.yebeh.2012.10.015

Fisher RS, Blum DE, DiVentura B, et al. Seizure diaries for clinical research and practice: limitations and future prospects. Vol. 24, Epilepsy Behav. 2012; 24(3):304–10. https://doi.org/10.1016/j.yebeh.2012.04.128 DOI: https://doi.org/10.1016/j.yebeh.2012.04.128

Epilepsy society. Seizure diaries | Epilepsy Society [Internet]. Epilepsy society. 2019 [cited 2022 Dec 1]. Available from: https://epilepsysociety.org.uk/about-epilepsy/epileptic-seizures/seizure-diaries

Haut SR, Hall CB, Borkowski T, et al. Modeling seizure self-prediction: An e-diary study. Epilepsia. 2013;54(11):1960–7. https://doi.org/10.1111/epi.12355 DOI: https://doi.org/10.1111/epi.12355

Van Berge Henegouwen MTH, Van Driel HF, Kasteleijn-Nolst Trenité DGA. A patient diary as a tool to improve medicine compliance. Pharm World Sci. 1999;21(1):21–4. https://doi.org/10.1023/a:1008627824731 DOI: https://doi.org/10.1023/A:1008627824731

Egenasi CK, Moodley AA, Steinberg WJ, Joubert G. The perceptions and attitudes of patients with epilepsy to the use of a seizure diary, South Africa. S Afr Fam Pract. 2023;65(1), a5503. https://doi.org/10.4102/safp.v65i1.5503 DOI: https://doi.org/10.4102/safp.v65i1.5503

Diamond IR, Grant RC, Feldman BM, et al. Defining consensus: A systematic review recommends methodologic criteria for reporting of Delphi studies. J Clin Epidemiol. 2014;67(4):401–9. https://doi.org/10.1016/j.jclinepi.2013.12.002 DOI: https://doi.org/10.1016/j.jclinepi.2013.12.002

Vogel C, Zwolinsky S, Griffiths C, et al. A Delphi study to build consensus on the definition and use of big data in obesity research. Int J Obes. 2019;43(12):2573–86. https://doi.org/10.1038/s41366-018-0313-9 DOI: https://doi.org/10.1038/s41366-018-0313-9

De Villiers MR, De Villiers PJT, Kent AP. The Delphi technique in health sciences education research. Med Teach. 2005;27(7):639–43. https://doi.org/10.1080/13611260500069947 DOI: https://doi.org/10.1080/13611260500069947

Humphrey-Murto S, Varpio L, Wood TJ, et al. The Use of the Delphi and Other Consensus Group Methods in Medical Education Research: A Review. Acad Med. 2017;92(10):1491–8. https://doi.org/10.1097/ACM.0000000000001812 DOI: https://doi.org/10.1097/ACM.0000000000001812

Van Schalkwyk SC, Kiguli-Malwadde E, Budak JZ, et al. Identifying research priorities for health professions education research in sub-Saharan Africa using a modified Delphi method. BMC Med Educ. 2020;20(1),443. https://doi.org/10.1186/s12909-020-02367-z DOI: https://doi.org/10.1186/s12909-020-02367-z

Keeney E, Thom H, Turner E, et al. Using a Modified Delphi Approach to Gain Consensus on Relevant Comparators in a Cost-Effectiveness Model: Application to Prostate Cancer Screening. Pharmacoeconomics. 2021;39(5):589–600. https://doi.org/10.1007/s40273-021-01009-6 DOI: https://doi.org/10.1007/s40273-021-01009-6

Jünger S, Payne SA, Brine J, et al. Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliat Med. 2017;31(8):684–706. https://doi.org/10.1177/0269216317690685 DOI: https://doi.org/10.1177/0269216317690685

McMillan SS, King M, Tully MP. How to use the nominal group and Delphi techniques. Int J Clin Pharm. 2016;38(3):655-62. https://doi.org/10.1007/s11096-016-0257-x DOI: https://doi.org/10.1007/s11096-016-0257-x

Akins RB, Tolson H, Cole BR. Stability of response characteristics of a Delphi panel: application of bootstrap data expansion. BMC Med Res Methodol. 2005;5(1):1–12. https://doi.org/10.1186/1471-2288-5-37 DOI: https://doi.org/10.1186/1471-2288-5-37

Okoli C, Pawlowski SD. The Delphi Method as a Research Tool: An Example, Design Considerations and Applications. Inf Manag J. 2004;42(1):15–29. https://doi.org/10.1016/j.im.2003.11.002 DOI: https://doi.org/10.1016/j.im.2003.11.002

Toepoel V, Emerson H. Mathematical Population Studies An International Journal of Mathematical Demography Using experts’ consensus (the Delphi method) to evaluate weighting techniques in web surveys not based on probability schemes. Math Popul Stud. 2017;24(3):161-71. https://doi.org/10.1080/08898480.2017.1330012 DOI: https://doi.org/10.1080/08898480.2017.1330012

Avery AJ, Savelyich BSP, Sheikh A, et al. Identifying and establishing consensus on the most important safety features of GP computer systems: e-Delphi study. Inform Prim Care. 2005;13(1):3–11. https://doi.org/10.14236/JHI.V13I1.575 DOI: https://doi.org/10.14236/jhi.v13i1.575

Cassar Flores A, Marshall S, Cordina M. Use of the Delphi technique to determine safety features to be included in a neonatal and paediatric prescription chart. Int J Clin Pharm. 2014;36(6):1179–89. https://doi.org/10.1007/s11096-014-0014-y DOI: https://doi.org/10.1007/s11096-014-0014-y

Woodcock T, Adeleke Y, Goeschel C, et al. A modified Delphi study to identify the features of high quality measurement plans for healthcare improvement projects. BMC Med Res Methodol. 2020;20(1). https://doi.org/10.1186/s12874-019-0886-6 DOI: https://doi.org/10.1186/s12874-019-0886-6

Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs. 2000;32(4):1008–15. https://doi.org/10.1046/j.1365-2648.2000.t01-1-01567.x DOI: https://doi.org/10.1046/j.1365-2648.2000.t01-1-01567.x

Fisher RS, Bartfeld E, Cramer JA. Use of an online epilepsy diary to characterize repetitive seizures. Epilepsy Behav. 2015;47:66–71. https://doi.org/10.1016/j.yebeh.2015.04.022 DOI: https://doi.org/10.1016/j.yebeh.2015.04.022

Hoppe C, Poepel A, Elger CE. Epilepsy: Accuracy of patient seizure counts. Arch Neurol. 2007;64(11):1595–9. https://doi.org/10.1001/archneur.64.11.1595 DOI: https://doi.org/10.1001/archneur.64.11.1595

Blachut B, Hoppe C, Surges R, et al. Counting seizures: The primary outcome measure in epileptology from the patients’ perspective. Seizure. 2015;29:97–103. https://doi.org/10.1016/j.seizure.2015.03.004 DOI: https://doi.org/10.1016/j.seizure.2015.03.004

Blachut B, Hoppe C, Surges R, et al. Subjective seizure counts by epilepsy clinical drug trial participants are not reliable. Epilepsy Behavior. 2017;67:122–7. https://doi.org/10.1016/j.yebeh.2016.10.036 DOI: https://doi.org/10.1016/j.yebeh.2016.10.036

Haut SR, Hall CB, Borkowski T, et al. Clinical features of the pre-ictal state: Mood changes and premonitory symptoms. Epilepsy Behavior. 2012;23(4):415–21. https://doi.org/10.1016/j.yebeh.2012.02.007 DOI: https://doi.org/10.1016/j.yebeh.2012.02.007

Ferastraoaru V, Goldenholz DM, Chiang S, et al. Characteristics of large patient-reported outcomes: Where can one million seizures get us? Epilepsia Open. 2018;3(3):364–73. https://doi.org/10.1002/epi4.12237 DOI: https://doi.org/10.1002/epi4.12237

Hallowell MR. Techniques to minimize bias when using the Delphi method to quantify construction safety and health risks. Building a Sustainable Future. In Construction Research Congress. Seattle, Washington, USA. 2009;1489–98. https://doi.org/10.1061/41020(339)151 DOI: https://doi.org/10.1061/41020(339)151




How to Cite

Egenasi, C. K., Moodley, A. A., Steinberg, W. J., & Joubert, G. (2023). A modified Delphi study to determine the contents of a seizure diary for patients living with epilepsy in South Africa. Journal of Public Health in Africa, 14(7). https://doi.org/10.4081/jphia.2023.2460



Original Articles