Implementation of an epilepsy self management protocol in an outpatient neurology clinic

It is essential that patients with epilepsy patients receive educational information about their disease and its management, but there is dissatisfaction with the education received. The purposes of this evidence-based project were to examine the current knowledge level and disease management behaviors of epilepsy patients in an outpatient clinic and to measure the effectiveness of implementing a self-management protocol using the Epilepsy Self Management Scale (ESMS). Pender's health promotion model and Rogers’ diffusion of innovation theory were used to guide the development and completion of this project. An evidence based epilepsy selfmanagement protocol was developed and implemented at an outpatient neurology clinic by an interprofessional clinic team that consisted of: a) evaluation of self management behaviors (Epilepsy Self Management Scale (ESMS)): b) individual education using the ESMS and developed resources: c) follow up phone call; and d) measurment of the outcomes of the self management protocol (patient self-management (ESMS) and process). Twenty patients participated in all or portions of the protocol. Scores on the ESMS increased from pre to post implementation of the protocol (t= -2.67). Identified as the most difficult self-management areas were seizure management and information management. Recommended changes in protocol implementation include adding information about safety measures such as medical alert bracelets and driving to the educational packets. Follow up phone calls were discontinued due to difficulties reaching patients. The results of this study suggest that the ESMS is an acceptable tool for evaluating patients’ self management behaviors. Epilepsy self management protocols need to include both verbal and written educational materials. Educating epilepsy patients about positive self management behaviors may lead to better health outcomes. Running head: EPILEPSY SELF MANAGEMENT 6 Introduction and Statement of the Problem Epilepsy is one of the most common neurological disorders in the world. It affects people of all ages, races, and ethnic groups (Chang & Lowenstein, 2003). Approximately 3 million people in the United States have been diagnosed with epilepsy, and an additional 10 percent of the U.S. population will likely experience at least one seizure in their lifetime (Chang & Lowenstein). A diagnosis of epilepsy is given to individuals who have experienced two or more unprovoked seizures (Chang & Lowenstein; Leppik, 2007). Epilepsy is considered a chronic health condition. One half of the individuals living in the United States currently are burdened by long-term health conditions (Jerant, von Friederichs-Fitzwater & Moore, 2005; Lau-Walker and Thompson, 2009), making epilepsy one of the nation’s leading neurological disorders. All patients with chronic conditions need both educational and psychosocial support in order to better understand and manage their disease. In particular, patients need educational and psychosocial support that fosters improved self-management. Specifically pertaining to epilepsy, Robinson et al. (2008) have defined “self-management” as “a class of adaptive behaviors used by persons to control their seizures” (p. 523). More than 20% of patients with epilepsy continue to have breakthrough seizures even while taking anti-epileptic medications (AEDs), which suggests that patients need to increase their knowledge, improve their self-management skills, and modify their healthcare behaviors in order to reduce seizure frequency and improve quality of life (Robinson et al.,). Epilepsy patients appreciate receiving educational information; however, they have frequently indicated dissatisfaction with the amount of time spent with and the quality of information provided to them by healthcare practitioners (Doughty, Baker, Jacoby & Lavaud, 2003). Risdale, Morgan, and O'Connor (1999) found that epilepsy patients receiving an Running head: EPILEPSY SELF MANAGEMENT 7 educational intervention perceived physicians as too busy to teach them about their disease and how to manage it. However, these same patients perceived nurses as having adequate time and expertise to educate them about epilepsy and the management of epilepsy. Participants indicated they believed that seeing a nurse when they first were diagnosed with epilepsy would have been more beneficial (Risdale et al.). Epilepsy is a chronic health problem (Barkley, 2003; DiIorio, Shafer, Letz, Henry et al., 2004; DiIorio, Shafer, Letz, Henry, Schomer et al., 2006), but evidence suggests that people with epilepsy are not receiving adequate educational support from their health care providers (DiIorio, Shafer, Letz, Henry et al.,2004; DiIorio, Shafer, Letz, Henry, Schomer et al., 2006) Patients with epilepsy need to understand their disease, and they need to develop and maintain the skills to manage it (Kendall, Thompson & Couldridge, 2004). Patients who fail to understand their disease and effective ways of managing it are far more likely to experience adverse health outcomes than patients who understand and manage their disease well (May & Pfafflin, 2002; Carreno, Vyhmeister, Grau, & Ivanovic, 2006). It is evident from the literature (DiIorio, Faherty et al., 1992; DiIorio, Henry et al., 1995;Kendall, Thompson & Couldridge, 2004;) that improving patients’ knowledge about their epilepsy will positively influence their self-efficacy and ability to manage their disease, thereby improving their symptoms and prognoses. The objective of this evidence-based project is to identify, understand, and increase the knowledge level of epilepsy patients who receive treatment at the University of Toledo Neurology clinic. Current practice at the UT Epilepsy Outpatient Clinic includes examination by a neurologist and, in some cases, by a medical student or a resident physician. For new patients, examinations typically range from 30 to 45 minutes, and include minimal time for educational intervention. All new patients diagnosed with epilepsy are provided an educational folder Running head: EPILEPSY SELF MANAGEMENT 8 containing information about clinic hours; important phone numbers; medications; and lifestyle management issues, such as driving and exercise. Depending on the physician, the patient schedule, and the workload, the information may or may not be reviewed with the patient during the clinic visit. New patients typically do not interact with any educational nursing staff members during their initial patient appointment. Rather, new patients are given an educational folder that contains articles and pamphlets, but patients are provided minimal explanation and limited opportunities for interaction. For this evidence-based project, all new patients received the Self-Management of Epilepsy Protocol created by the author. The participants completed the Epilepsy SelfManagement Scale (ESMS) survey (DiIorio, Faherty et al., 1992) to assess their current understanding of epilepsy and their self-management abilities. After completing the survey, patients participated in an educational SESSION With a nurse or nurse practitioner. During this educational session, the nurse practitioner (NP) or registered nurse (RN) educated the patients by reviewing their survey answers and the educational sheet with them. The nurses answered any questions posed by the patients or caregivers. Phone contact was made following their appointment, and a second ESMS was administered and completed by participants a few weeks