An online tool for information to women with epilepsy and therapeutic drug monitoring in pregnancy: Design and pilot study

Lisovska, Kristina; Gustafsson, Eva; Klecki, Judith; Tranberg, Anna Edelvik; Zelano, Johan

doi:10.1002/epi4.12473

Cited by 5 publications

(10 citation statements)

References 11 publications

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“…This observation could potentially indicate suboptimal doctor–patient communication, potentially resulting from a focus on maximizing efficiency. Given the high turnover rate in Chinese clinics, the utilization of an online tool, as previously developed by Zelano's group (Lisovska et al., 2021) would be an ideal approach for WWE to access information at any time and location, thereby enhancing patient education and facilitating improved communication.…”

Section: Discussionmentioning

confidence: 99%

Pregnancy‐related knowledge in women with epilepsy in childbearing age: A pilot questionnaire survey from China

Li,

Cao,

Zhang

et al. 2024

Brain and Behavior

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PurposeWe aim to understand the knowledge of and attitudes toward pregnancy issues among women with epilepsy (WWE) and their caregivers and analyze the answers from the questionnaire to expose topics that require educational activities; thus, WWE experiences pregnancy better.MethodsWWE at their childbearing age and/or their caregivers who entered the Fourth Affiliated Hospital of Zhejiang University for treatment of their condition were invited to fill out a questionnaire between March 1 and November 31, 2022.ResultsA combined total of 205 WWE and 142 caregivers completed the questionnaires. Among the surveyed WWE, a majority (63.74%) reported experiencing at least one miscarriage or induced abortion. However, a significant proportion (84.62%) of these WWE were still able to successfully give birth to at least one child. Furthermore, the offspring of these WWE showed no significant differences compared to the offspring of women without epilepsy, as reported by 93.51% of the participants. The participants’ knowledge regarding the impact of epilepsy on pregnancy was found to be comparable, with average scores of 7.74 and 7.84, respectively. The participants exhibited a limited comprehension of antiseizure medications (ASMs)‐related knowledge, specifically pertaining to ASMs adjustment during pregnancy (17.56% vs. 16.90%) and offspring outcomes (30.24% vs. 26.06%). Statistical analysis revealed significant correlations between the overall score and education level (p < .001), as well as epilepsy duration (p = .008). Regarding the source of knowledge, participants acknowledged primarily relying on neurologists, who remained their preferred choice for consultation.ConclusionIn our study, the understanding of pregnancy‐related knowledge did not differ from WWE and their caregivers, both are far from satisfactory in certain areas. It is urgent for WWE and their caregivers to improve their pregnancy‐related knowledge of epilepsy. As their primary access is from knowledgeable health care professionals like neurologists, well‐trained neurologists in epilepsy management during pregnancy are in need.

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Section: Discussionmentioning

confidence: 99%

Pregnancy‐related knowledge in women with epilepsy in childbearing age: A pilot questionnaire survey from China

Li,

Cao,

Zhang

et al. 2024

Brain and Behavior

View full text Add to dashboard Cite

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“…This might reflect inadequate doctor-patient communication in the clinic in China. Zelano's group designed an online tool for information to WWE, which enhanced patient education and improved communication during pregnancy for WWE ( 20 ). Our study also found that most WWE changed their attitude toward pregnancy after receiving pregnancy-related information.…”

Section: Discussionmentioning

confidence: 99%

Management of epilepsy in pregnancy in eastern China: A survey from the Zhejiang association against epilepsy

Qian

Cai

et al. 2022

Front. Neurol.

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ObjectiveWe aimed to evaluate the knowledge of the board members of the Zhejiang Association Against Epilepsy (ZAAE) regarding pregnancy of women with epilepsy (WWE), as well as their clinical practice and obstacles in the management of WWE.MethodsA cross-sectional survey was conducted among the board members of the ZAAE using a questionnaire based on the management guidelines for WWE during pregnancy in China. We recorded the demographic characteristics of the surveyed practitioners, the coincidence rate of each question, clinical practice, and the barriers encountered in managing WWE.ResultsThis survey showed that the average knowledge score of the surveyed practitioners was 71.02%, and the knowledge score of neurologists was higher than that of neurosurgeons. Knowledge regarding the following three aspects was relatively poor: whether WWE is associated with an increased risk of cesarean section and preterm delivery, the preferred analgesic drugs for WWE during delivery, and the time of postpartum blood concentration monitoring. After multiple linear regression analysis, the score of neurologists was correlated to the number of pregnant WWE treated each year. In addition, the biggest difficulty in the management of WWE during pregnancy is the lack of patient education and doctors training on pregnant epilepsy management.ConclusionOur study revealed the ZAAE board members' knowledge and management status of pregnant WWE. In addition, our study identified the biggest obstacle to the management of WWE during pregnancy, and emphasized the importance of training and practice of epilepsy knowledge during pregnancy for practitioners and the significance of interdisciplinary communication.

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“…Patient satisfaction was high in an early interim analysis. 15 We now report the final analysis of the quality assurance project run in parallel with the launch of the system. After 3 years, the system has become integrated into clinical practice and the dominating mode of communication with women with epilepsy during pregnancy.…”

Section: Introductionmentioning

confidence: 99%

“…The digitalization of epilepsy care and telemedicine was greatly accelerated by the pandemic, 9–11 but digital patient education tools, remote delivery of epilepsy care, and smartphone apps to study ASM compliance during pregnancy existed before 12–14 . In 2019, we developed an online tool for information on pregnancy‐related issues for women with epilepsy and for communication regarding therapeutic drug monitoring (TDM) and dose adjustments during pregnancy 15 . The tool was primarily designed to facilitate communication and reduce the need for telephone contacts between epilepsy nurses and patients.…”

Section: Introductionmentioning

confidence: 99%

Survey of an online system for information to women with epilepsy of childbearing age and management during pregnancy: A 3‐year evaluation

Smith Malm,

Klecki,

Lisovska

et al. 2024

Epilepsia Open

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ObjectiveWe developed an online tool for women with epilepsy consisting of two modules: one with information on pregnancy‐related issues (information module) and one for reminders about blood test and communication about dose changes (pregnancy module) . Our aim was to assess perceived value, user‐friendliness, and improvement of patient knowledge in users.MethodsThe system was launched in 2019 and patients invited by epilepsy nurses were asked to participate in a survey one month after the invitation for the information module, and one month postnatally for the pregnancy module.ResultsBy November 2022, the system had been used by 96 individuals out of 100 invited in the pregnancy module, in a total of 114 pregnancies. 111 women had been invited to the information module, and 70 of these accessed it. The survey received 96 answers (44 information, 52 pregnancy). User‐friendliness was rated as good or very good by a little over half of the users; 55% in the information module and 52% in the pregnancy module. Among pregnant women, 83% found the TDM part useful and most would prefer a similar system in future pregnancies. Sixty‐four percent of users of the information module and 48% of the pregnancy module found that the system had increased their knowledge. Two knowledge questions were answered correctly by a significantly higher proportion of those that had accessed the online information.SignificanceThere was great demand for online communication during pregnancy and our experiences of implementation can hopefully assist digitalization of epilepsy care elsewhere. Online information also seems to increase knowledge about pregnancy‐related issues, but our invitation‐only method of inclusion was not effective for widespread dissemination. Patient‐initiated access with optional epilepsy‐team contact if questions arise could be an alternative.

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An online tool for information to women with epilepsy and therapeutic drug monitoring in pregnancy: Design and pilot study

Abstract: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Cited by 5 publications

References 11 publications

Pregnancy‐related knowledge in women with epilepsy in childbearing age: A pilot questionnaire survey from China

Pregnancy‐related knowledge in women with epilepsy in childbearing age: A pilot questionnaire survey from China

Management of epilepsy in pregnancy in eastern China: A survey from the Zhejiang association against epilepsy

Survey of an online system for information to women with epilepsy of childbearing age and management during pregnancy: A 3‐year evaluation

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