The patients’ perspective on epilepsy: Challenges, sexual problems, provision of information and adherence to treatment
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- Institutt for klinisk medisin [10714]
Abstract
Epilepsy is a common neurological disease characterized by unpredictable recurrent epileptic seizures. The aim of this thesis was to evaluate the patients’ perspective on various epilepsy-related challenges in everyday life. Our surveys demonstrated that even patients with well-controlled epilepsy reported a high degree of various epilepsy-related problems of physical, cognitive, and psychosocial nature. We found that sexual difficulties are more common among those with epilepsy compared to the general population. More and better information from the health care system was requested, particularly about the disease, its treatment, and possible consequences of recurrent seizures. Nearly all patients wanted information about the risk of sudden unexpected epilepsy-related death, but only about one third had received such information. About one third of the patients admitted to have failed to have taken the drugs as prescribed, either intentionally or unintentionally. This thesis has uncovered the major obstacles patients with epilepsy are facing. This knowledge is of great importance to further improve modern, comprehensive, patient-centered care in epilepsy.List of papers
Paper I. Henning O, Landmark CJ, Henning D, Nakken KO, Lossius MI. Challenges in epilepsy - the perspective of Norwegian epilepsy patients. Acta Neurologica Scandinavica 2019;140:40-47. DOI: 10.1111/ane.13098. The article is included in the thesis. Also available at: https://doi.org/10.1111/ane.13098 |
Paper II. Henning OJ, Nakken KO, Træen B, Mowinckel P, Lossius M. Sexual problems in people with refractory epilepsy. Epilepsy & Behavior 2016;61:174-179. DOI: 10.1016/j.yebeh.2016.05.038. The article is included in the thesis. Also available at: https://doi.org/10.1016/j.yebeh.2016.05.038 |
Paper III. Henning OJ, Landmark CJ, Træen B, Svendsen T, Farmen A, Nakken KO, Lossius MI. Sexual function in people with epilepsy: similarities and differences with the general population. Epilepsia 2019; 60(9):1984-1992. DOI: 10.1111/epi.16311. The article is included in the thesis. Also available at: https://doi.org/10.1111/epi.16311 |
Paper IV. Henning O, Alfstad KA, Nakken KO, Lossius MI. A call for better information about epilepsy: The patients' perspective - an online survey. Seizure 2019;69:173-179. DOI: 10.1016/j.seizure.2019.04.015. The article is not available in DUO due to publisher restrictions. The published version is available at: https://doi.org/10.1016/j.seizure.2019.04.015 |
Paper V. Henning O, Nakken KO, Lossius MI. People with epilepsy and their relatives want more information about risks of injuries and premature death. Epilepsy & Behavior 2018;82:6-10. DOI: 10.1016/j.yebeh.2018.02.023. The article is included in the thesis. Also available at: https://doi.org/10.1016/j.yebeh.2018.02.023 |
Paper VI. Henning O, Landmark CJ, Nakken KO, Lossius MI. Non-adherence to treatment regimens in epilepsy from the patient's perspective and predisposing factors: differences between intentional and unintentional lack of adherence. Epilepsia 2019;60(5):e58-e62. DOI: 10.1111/epi.14734. The article is not available in DUO due to publisher restrictions. The published version is available at: https://doi.org/10.1111/epi.14734 |
Paper VII. Henning OJ, Lossius MI, Lima M, Mevåg M, Villagran A, Nakken KO, Landmark CJ. Refractory epilepsy and non-adherence to drug treatment. Epilepsia Open 2019. DOI: 10.1002/epi4.12367. The article is included in the thesis. Also available at: https://doi.org/10.1002/epi4.12367 |