Abstract
Efficacy of the Epilepsy Nurse: Results of a Randomized Controlled Study
Pfafflin M, Schmitz B, May TW. Epilepsia 2016;57:1190–1198.
Objective: We investigated the efficacy of epilepsy nurses on satisfaction with counseling about epilepsy in a randomized, controlled, prospective trial. Methods: Patients with epilepsy treated by neurologists in outpatient clinics were consecutively enrolled and randomly allocated to either the epilepsy nurse (EN) group (n = 92) or the control group (n = 95). Patients in the EN group were advised according to their needs by epilepsy nurses. The control group received routine care without additional counseling. The EN group completed the questionnaires before the first consultation (T1) and 6 months later (T2); the control group completed the questionnaires twice with an interval of 6 months. Primary outcome measure was satisfaction of patients with information and support. Secondary outcome measures were satisfaction with patient–doctor relationship, organization of treatment, epilepsy knowledge, coping, and restrictions in daily life. Anxiety and depression (Hospital Anxiety and Depression Scale) and global Quality of Life (item from QO-LIE-31) were also assessed. Statistical analysis included generalized estimating equation (GEE) and nonparametric tests. Results: Satisfaction with information and support improved significantly in the EN group compared to the control group (GEE, interaction group 3 time, p = 0.001). In addition, Epilepsy Knowledge (p = 0.014) and Coping (subscale Information Seeking) (p = 0.023) improved. Increase in satisfaction with counseling was dependent on patients’ needs for information and on the amount of received information (Jonckheere-Terpstra test, p < 0.001). No differences between the groups were observed on other epilepsy-specific scales. Significance: A reliable questionnaire for satisfaction with epilepsy care has been developed. Epilepsy nurses improve the satisfaction of patients with counseling and information about epilepsy and concomitant problems.
Commentary
Nurses interact with patients in various roles in the U.S. health care system, from bedside nurses to advanced practice nurses (such as nurse practitioners and clinical nurse specialists) and in a variety of settings, including private practice, in collaborative care with primary care physicians or neurologists, and in specialized epilepsy centers. With the Affordable Care Act (ACA), more patients are insured than ever before, and health care resources are being stretched. Advanced practice nurses have been able to lessen the load on physicians by seeing established patients, allowing them to see more patients, thus increasing access to care and improving coordination of services. These same nurse providers can also bring nursing expertise to rural areas where physician numbers are low. Physician visits are often short, which may limit the ability to address all of the patient's needs. Nurses have been filling this gap for years but have put relatively less effort into rigorous research to document the added value of this work and its effect on patient care and improvement in quality of life. Cochrane reviews have identified this as an area that needs further study (1).
In our current health care environment, nurses are increasingly being asked to measure their effectiveness, not only on the health outcomes of our patients but on their cost effectiveness to the institutions that employ them and to insurers that reimburse them for their services. Patient satisfaction is part of that equation. It is difficult, however, to dissect the added value of nurses in our increasingly complex health care systems because so many individuals and disciplines interface with an individual patient. Patient education, once firmly in the domain of nursing, now often arises from multiple sources—social media, the Internet, friends, family, support groups, nurses, and physicians—making it difficult to measure the impact each of these sources has on understanding of the disorder and patient satisfaction.
In their paper, Pfafflin and coworkers examine the efficacy of epilepsy nurses on satisfaction with care and education in people with epilepsy. Patients who consented to participate were randomized to receive either routine care or additional support and counseling from a trained epilepsy nurse. The investigators followed rigorous principles of study design, with enrollment based on sound power calculations and suitable to identify a moderate effect size. Various outcome measures were studied, including several measures of patient satisfaction, knowledge, coping, mood, and quality of life. Of note, there were no limits placed on the amount of time the epilepsy nurses could spend with patients over the 6-month study period. Patient calls and e-mails were encouraged, and the average time spent counseling was 80 minutes per patient, with the range extending to 6 hours devoted to counseling an individual patient. Patients who received counseling from a nurse specialist had significantly higher satisfaction scores compared with the control group (p < 0.001). Interestingly, satisfaction scores were correlated with the needs of the patients; those who reported the greatest need at enrollment were mostly likely to show improvement in satisfaction scores. This was particularly true in topics that related to side effects of AEDs, career opportunities, social and family issues and support, and from patients seeking more information and advice. The effect of the epilepsy nurse on epilepsy knowledge was less profound, but given the multiple sources of information available, a ceiling effect was suspected.
These findings underscore the pivotal role of nurse specialists to provide education, self- management skills and counseling, freeing physicians to focus more on medical management and therapy. The extensive time provided by nurse specialists in this study may reflect the extensive time that nurse specialists already invest in their patients, with positive effects on patient satisfaction. However, the reality is that epilepsy nurse time is often constrained, possibly limiting the generalizability of these research findings. Nurses are in a unique position to have frequent contact with patients as inpatients, at office visits, and by telephone, depending on their practices. Every encounter with a patient is a teachable moment, but the added benefit of these encounters on patient knowledge and self-management is difficult to capture. This study emphasizes the importance of having another specialist, besides the physician, contributing to patient care. It draws attention to the importance of the epilepsy nurse–patient interaction, and the time required for some patients to fully comprehend the impact of their disease.
The findings of this study concur with other studies regarding the importance of nursing interventions. Paul and coworkers (2) studied an even more prominent role for nurses—a nurse-led clinic in India—and found that patients were highly satisfied with the nurse-run clinic. Interestingly, satisfaction scores were highest in patients with lower incomes. Ridsdale and colleagues (3) looked at nursing interventions compared with usual care in patients with newly diagnosed epilepsy. The authors found that nurse interventions helped patients improve knowledge scores, particularly in the group with the lowest baseline knowledge scores. There are numerous examples of the added value of nursing specialists in other areas of medicine that may be relevant to epilepsy nursing. For example, a meta-analysis by Chase and coworkers (4) examined interventions to improve medical adherence in patients with coronary artery disease and found that interventions provided by nurses were especially effective. Further studies of the role of the epilepsy nurse with specific measurable outcomes such as emergency room visits, injuries, and school and work productivity are needed.
Opportunities for improved care of people with epilepsy may include the development of a special certification for nurses taking care of inpatients in tertiary or quaternary epilepsy centers, similar to the certification for nurses who work in comprehensive stroke centers. There is no specific course in the United States for the education of epilepsy nurses as there is in Germany and the United Kingdom. Most epilepsy nurse education—beyond formal nursing school training—comes from several sources: 1) on-the-job training, 2) attending conferences specific to the care of people with epilepsy such as the American Epilepsy Society Annual Meeting and local nursing conferences, 3) opportunities to work with a nurse expert in the field, and 4) distance learning. Another option would be to train a core group of nurses in each institution, similar to the diabetes educators who are in most hospitals. Presently, nurses working in clinics, private offices, and emergency departments may not have access to that expert nurse, as epilepsy patients may be a small part of their practices.
In summary, this study points out the importance of nurses in the care of people with epilepsy. It suggests that resources should be focused on those patients with the greatest support and education needs. Important roles of the epilepsy nurse, just to name a few, include: 1) education regarding diagnosis, 2) medical management and the potential adverse effects of therapy; 3) self-management skills, and 4) psychosocial, school/work, and interpersonal issues. Epilepsy nurse time spent with patients improved patient knowledge and satisfaction. Improved quality of life in people with epilepsy results from a multidisciplinary approach, and the need for further similar studies of the unique contributions of the epilepsy nurse is apparent.