Epilepsy is a chronic disease that affects 1% of the population and can be associated with significant physical and psychosocial sequelae.1 A person with epilepsy often has comorbid conditions and must carefully manage their epilepsy and comorbid diseases, as well as navigate how their life is affected by their diseases.2 Developing self-management strategies in epilepsy requires ongoing, effective patient-provider communication to ensure treatment adherence and optimize outcomes (via patient-centered care). Patients with epilepsy report that they want to be an active participant in their own self-management,3 but the patient-provider dynamic is often fraught with difficulties. Time limitations and lack of patient-centered communication techniques often interfere with patient-provider goal setting and hamper patient management recommendations.4 Patients with epilepsy have reported feeling inadequately informed regarding aspects of disease treatment or management,2,5 despite healthcare quality indicators for epilepsy providers designed to ensure that parameters of patient care are addressed.6 The quality indicators cover topics to ensure patients understand their disease, treatment, side effects, and safety issues, but they do not thoroughly address equally important lifestyle issues, such as getting sufficient sleep and engaging in stress reduction activities.1
In this challenging environment with an increased emphasis on quality care, nurses are uniquely positioned to facilitate effective communication with patients, because they typically provide the first interaction during an office visit and perform initial assessments of patient conditions and needs. In addition, patients with chronic disease may be more likely to contact and discuss care issues with nurses than physicians,7 providing an opportunity for nurses to develop a trusting patient-provider relationship that supports active communication and allows patients to identify both self-management priorities and barriers. Indeed, patients note that conversations are more open and unhurried when they are active participants in discussing their own care needs.7
Although epilepsy care is a specialized field and formal training opportunities are available, many nurses who care for patients with epilepsy may not have formal education in this area.8 Therefore, resources that help nurses assess and assist their patients are needed.9 Nursing guidelines for the care and education of patients with epilepsy are a critical first step to expand one’s knowledge on epilepsy diagnosis and treatment, patient self-management, and psychosocial aspects of care.9–11 A tool providing discussion topics important to patients with epilepsy would also empower nurses without epilepsy-specific training, regardless of their geographic location or clinical setting, who may directly care for patients with epilepsy.10
The benefit of nurse-led interventions to improve patient knowledge of disease and effective self-management strategies has been reported across a number of chronic conditions,7 including in managing patients with epilepsy.12 In epilepsy, these benefits include improved patient satisfaction with knowledge and coping skills,1 improved emotional well-being, confidence and treatment adherence, lower costs, and shorter inpatient stays.8 Although studies have not reported significant impact on quality of life measures or clinical outcomes, a recent study has reported on improved quality of care provided by nurse-physician teams compared with physician-only care.13 These findings parallel the reported benefit of nurses educating patients to improve disease management and in their role of identifying patients for further management of disease or treatment goals in a variety of other chronic diseases.14
Given that nurses without epilepsy specialization will increasingly encounter and provide care for patients with epilepsy, we sought to create a tool to help improve nurse-patient communications and positively affect a nurse’s approach to care for people with epilepsy using the model of patient-centered care.2 With this model, patient care is customized according to patient needs and values, with the patient as the source of control.10 Knowledge and information are freely shared between patients and their healthcare providers, patient needs are anticipated, and treatment decisions are made based on the best available evidence.
The Epilepsy Nursing Communication Tool (ENCT) was developed in 3 phases, in alignment with qualitative research recommendations (see Figure, Supplemental Digital Content 1, available at https://links.lww.com/JNN/A117).15 Phase 1 entailed a thorough review of the PubMed literature, searched on June 2015 (limited to humans and English language) to identify publications pertaining to patient surveys or questionnaires, interview guides (limited to 2013–2015), and satisfaction with such assessments with nurses or patients with epilepsy. Of 544 returns, 127 were identified as possibly relevant. The studies were reviewed for topics that were of importance (or deficient) to the management of patients with epilepsy. After this thorough literature search, survey questions and topics for the preliminary ENCT were developed by the 2 nursing authors, both experts in epilepsy care. Open-ended questions were formulated to address topics considered important to patients to allow nurses and patients the ability to explore patient care needs.2
In phase 2, survey items were refined based on feedback from expert nurses.16 We recruited the expert nurses through the American Epilepsy Society and through the American Association of Neuroscience Nursing. Eight nurses were recruited: 7 were experts in epilepsy and 1 was an expert in patient communication techniques. Of the 7 with epilepsy expertise, 6 have master’s degrees in nursing and 1 has a bachelor’s degree in nursing, with epilepsy experience ranging from 5 to 25 years, and all work in epilepsy-specific clinical settings. The patient communication expert has a PhD in nursing. After recruitment, the experts were asked to review the original tool for completeness and to provide input for additional content using a secure Web-based digital platform. This platform provided support for an online discussion forum where the experts could share their thoughts providing context for future discussions. After review, each nurse was asked to comment in each area, and the comments were recorded on the digital platform. Nurses were given 2 weeks to respond both to the individual ENCT items and also to others’ comments. A real-time discussion (via phone) was held providing the nurses a chance to openly critique the strengths and weaknesses of the tool. The authors analyzed the feedback and revised the ENCT based on the discussions and their analyses; the tool was resubmitted to the 8 nurses for further review and comment via the digital platform. Eight questions regarding the ENCT were provided to initiate discussion. All nurses fully participated in the discussion forums over the 2-week review period. After the 2-week comment period on the digital platform, the authors reviewed feedback and revised the ENCT, followed by a second discussion forum. A final version was completed after the second forum.
Ease of Use
In phase 3, the ENCT was assessed for ease of use and utility.15 The finalized tool was submitted to a separate panel of 15 nurses who primarily worked in either hospitals or clinics, cared for patients with epilepsy, and had at least 1 but fewer than 5 years of experience. The 15 panelists were asked to assess feasibility and usability on a 5-point scale (1, strongly disagree, to 5, strongly agree with positive statements) for 11 statements.17 The scores were tallied, and further revisions to the ENCT were made based on those findings. The tool was then given to the original 8 nurse experts for final comments, which were then considered by the authors before making the final revisions.
The final ENCT resulting from phase 3 development is shown in Table 1. Forty questions were categorized under the main topics of seizures, medications, side effects, and normal daily activity. The patient-centered questions were developed to encourage full patient engagement and were generally posed as open-ended questions or requests that patients freely describe or talk about concerning an issue, topic, situation, or concern. The initial ENCT also contained a list of problem-specific cues that aligned with category questions. These cues were included to help nurses prompt their patients for more information when initial answers are lacking in detail or depth.
Ease of Use
During phase 3, an evaluation form with a series of 11 statements probing the feasibility and usability of the ENCT was provided to 15 nurses. Of these, 10 nurses (66.7%) returned the form with their ratings. The median values for usefulness (4.5), ease of use (4), and acceptability (4) support strong tool utility (Table 2). The ENCT was refined based on feedback, and additional testing is ongoing.
In this study, the initial ENCT was developed and then submitted to 15 nurses who rated the tool as having clinical utility and feasibility for the care of patients with epilepsy. Because one-third of the surveys were not returned, the robustness of the rating is limited. The ENCT will next be expanded to include best practices. Further refinement will improve the ENCT, which could provide a useful tool for nurses to help improve patient-provider communication and support quality improvement efforts.
Epilepsy-specific tools are available to assess seizure risk and management strategies, identify comorbid depression or anxiety, and capture patient-reported quality of life18 or changes in quality of life,19 but none to date have been developed specifically to improve the communication interface between nurses and their patients with epilepsy. By prompting and capturing topics of concern to patients, nurses may directly provide instruction, education, and referrals, as well as identify areas in need of further attention. Recommendations for effective communication with patients include providing straightforward, specific, and repetitive information; using open-ended questions; paraphrasing responses to confirm patient understanding; addressing vital topics first; and providing written instructions.4
Recommendations from the American Academy of Neurology to improve the quality of care for patients with epilepsy cover 8 overarching topics, including assessing seizure type and frequency, reviewing results of imaging tests, providing counsel on antiepileptic drug side effects and safety issues, and how treatment may affect women with respect to childbearing.6 Although these quality indicators are important, they do not fully address other essential areas of patient care such as the discussion of how life is affected by epilepsy. Furthermore, the quality indicators do not holistically reflect quality care because they are more physician oriented. Finally, quality of care is often suboptimal when measured against a variety of care processes, which may indicate that additional quality measures are needed that may involve care delivery from allied health professions.20 In the case of epilepsy, nurses are essential to improving the quality of care by engaging patients in more detail on the topics of greatest concern, including antiepileptic drug side effects and epilepsy-related safety issues such as supporting development of a clear seizure management plan for unforeseen events.
Conclusion and Nursing Implications
The goal of the ENCT is to help nurses, particularly those without epilepsy-specific training, have more thorough and constructive conversations with their patients with epilepsy. Patients require epilepsy-related information regarding the impact of the disease on comorbid conditions, short- and long-term side effects of antiepileptic drug treatments, repeated discussions on topics due to memory issues, referral to social services, and honesty regarding the challenges of finding optimal treatment combinations for their individual disease.20 The ENCT is designed to facilitate these discussions. By providing a format that encourages patients to discuss issues that are not routinely covered, this tool may assist nurses in capturing and addressing a range of patient needs and enhance patient-provider communication and decision-making. Further refinement of the tool is ongoing, with the goal of improving the quality of interactions between patients with epilepsy and their providers to ensure optimal management of epilepsy.
The authors thank the nurses who reviewed the ENCT and provided insights during the development of this tool. The authors acknowledge Lynne Isbell, PhD, CMPP (Evidence Scientific Solutions, Philadelphia, PA), for writing assistance, which was funded by UCB Pharma.
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