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Successful health communication in epileptology

  • Steven C. Schachter
    Correspondence
    Correspondence to: 125 Nashua Street, Room 328, Boston, MA 02114, USA.
    Affiliations
    Departments of Neurology, Beth Israel Deaconess Medical Center, Massachusetts General Hospital, and Harvard Medical School, Boston, MA, USA
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Open ArchivePublished:October 14, 2016DOI:https://doi.org/10.1016/j.seizure.2016.10.005

      Abstract

      Advances in communication technologies have had an impact on virtually every aspect of daily life and have shaped the ways that persons with epilepsy learn about their disorder; communicate with their care providers, families and friends; and are viewed by society. This paper discusses drivers of changing communication patterns in epileptology and barriers that remain, available tools to enhance communication among and between all stakeholders, and potential future developments.

      Keywords

      1. Introduction

      Over the past several decades, communication technologies have significantly evolved and become globalized through the advent of digital computing and the subsequent widespread availability of the internet and social networking. As a result, Industrial Revolution-based economies have been transformed to information computerization- and knowledge-based economies [], underscoring the terms that are used to refer to the present time — “Information Age” and “Communication Age”. Digital-enabled communication platforms were first designed for and adopted by developed countries and younger, computer-savvy persons, but are now available to and utilized by virtually anyone in the world with access to the internet via a smartphone.
      These profound developments have affected every aspect of daily life, such as the ways in which people communicate about health and disease. This paper reviews selected aspects of the impact of the Information Age in epileptology, drivers of changing communication patterns and barriers that remain, available tools to enhance communication, and potential future developments.

      2. Major drivers of changing communication patterns in epileptology and remaining barriers

      Effective communication has always been foundational to the care of patients with epilepsy, though not necessarily practiced [
      • Chinthapalli R.
      • Serane V.T.
      • Pill J.
      • Millard D.
      • Batten D.
      • Chinthapalli V.K.
      Epilepsy clinic services, NICE guidelines and patient satisfaction—an audit.
      ]. Various aspects of communication in epileptology have been featured in publications in Seizure since its beginning 25 years ago [
      • Lebrun Y.
      The language of epilepsy.
      ,
      • Boulton A.
      Education in epilepsy consensus meeting. Overview of 10 September EEG round table meeting.
      ,
      • Brown S.
      • Betts T.
      • Chadwick D.
      • Hall B.
      • Shorvon S.
      • Wallace S.
      An epilepsy needs document.
      ].
      Perhaps the single most important driver underlying the changing patterns of communication in epileptology in the modern era besides the concurrent availability of information technologies such as the internet and social networks has been the change in the aim of epilepsy treatment from a singular focus on controlling seizures (especially convulsive seizures), no matter what the associated consequences, to enabling a person with epilepsy to live to their full potential, free from the interfering effects of seizures and treatment. This evolution was heralded over 60 years ago by Lennox and Markham when they wrote that physicians who treat patients with epilepsy must “match modern drug and surgical therapy with practical sociopsychological therapy” and be “concerned not only with turbulent brain waves but with disturbed emotions…” [
      • Lennox W.G.
      • Markham C.H.
      The sociopsychological treatment of epilepsy.
      ].
      This advance has gained support by more recently published practice guidelines [,
      • Rajpura A.
      • Sethi S.
      Evidence-based standards of care for adults with epilepsy—a literature review.
      ] and quality indicator measures [
      • Pugh M.J.
      • McMillan K.K.
      Guidelines and quality standards for adults with epilepsy.
      ]. For example, the American Academy of Neurology/American Epilepsy Society (AAN/AES) evidence-based guideline for management of an unprovoked first seizure in adults contains a number of recommendations that require communication such as informing patients (1) about their seizure recurrence risk and the risk of antiepileptic drug side effects, (2) the basis for the clinician's recommendations whether to initiate immediate treatment or not, and (3) that immediate treatment will not improve the long-term prognosis for seizure remission but will reduce seizure risk over the subsequent 2 years [
      • Krumholz A.
      • Wiebe S.
      • Gronseth G.S.
      • Gloss D.S.
      • Sanchez A.M.
      • Kabir A.A.
      • et al.
      Evidence-based guideline: management of an unprovoked first seizure in adults: report of the Guideline Development Subcommittee of the American Academy of Neurology and the American Epilepsy Society.
      ]. Similarly, the AAN/AES guideline for management issues related to pregnancy in women with epilepsy contains specific counseling recommendations related to likelihood of seizure freedom and smoking [
      • Harden C.L.
      • Pennell P.B.
      • Koppel B.S.
      • Hovinga C.A.
      • Gidal B.
      • Meador K.J.
      • et al.
      Management issues for women with epilepsy–focus on pregnancy (an evidence-based review): III. Vitamin K, folic acid, blood levels, and breast-feeding: report of the Quality Standards Subcommittee and Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and the American Epilepsy Society.
      ].
      Three other significant drivers are personalized/precision medicine, and both the 2012 Institute of Medicine (IOM) report “Epilepsy Across the Spectrum: Promoting Health and Understanding”, which makes explicit recommendations regarding coordination of public awareness efforts and engagement of people with epilepsy and their families in education, dissemination, and advocacy for improved care and services [], and the 2014 National Institutes for Neurological Disorders and Stroke (NINDS) Benchmarks for Epilepsy Research [].
      The IOM report called for efforts to
      • Ensure that educational materials and programs for health professionals reflect current research, clinical guidelines, and best practices and that they convey positive messages that reduce stigma and reinforce the need for (and skills associated with) clear health communication, which takes into account the culture and health literacy of the target audience
      • Develop and assess educational interventions and resources focused on communication skills and strategies for discussing sensitive topics (e.g., sudden unexpected death in epilepsy (SUDEP), suicidality, and risks associated with medication nonadherence)
      • Provide access for all people with epilepsy and their families to accurate, clearly communicated educational materials that are linguistically and culturally appropriate for the targeted audiences, including underserved groups
      Similarly, selected 2014 NINDS Benchmarks target efforts to “develop, improve, and implement interventions for effective self-management, including treatment adherence” and, consistent with the advice of Lennox and Markham [
      • Lennox W.G.
      • Markham C.H.
      The sociopsychological treatment of epilepsy.
      ], to understand and limit adverse impacts of seizures and anti-seizure treatments on quality of life.
      While drivers to enhanced communication in epileptology have set the stage for more effective clinical management, greater attainment of patient self-empowerment, and improved health outcomes, a number of ongoing barriers prevent full realization of these goals. Unfavorable attitudes toward epilepsy in both developed and developing countries, perpetuated by cultural attitudes as well as media reports, movies, and television shows that portray epilepsy in an unfavorable light continue to stigmatize persons with epilepsy and set a generally negative tone in society. Recent broad educational efforts may not have been effective at reducing this barrier, suggesting the need for “new communication approaches grounded in decision theory that quell risk perceptions and allay negative emotional responses” [
      • Cui W.
      • Kobau R.
      • Zack M.M.
      • Buelow J.M.
      • Austin J.K.
      Recent changes in attitudes of US adults toward people with epilepsy — results from the 2005 SummerStyles and 2013 FallStyles surveys.
      ].
      Sub-optimal health literacy of patients as well as inadequate cultural literacy of clinicians may prevent effective communication. Difficulty accessing epilepsy specialists and insufficient time for face-to-face conversation to discuss important topics in the doctor’s office are quite significant barriers that have become further exacerbated over time because of increasingly limited resources and pressures that payors apply to limit referrals to epilepsy specialists and for clinicians to see more patients in less time. Consequently, the substantial information needs of patients with epilepsy are not readily met in current models of healthcare delivery. Not surprisingly, patients in one study identified less delay in accessing specialist care, better information provision (particularly among women), and better communication as important to them [
      • Bennett L.
      • Bergin M.
      • Gooney M.
      • Doherty C.P.
      • Synnott C.
      • Wells J.S.G.
      Epilepsy services in Ireland: ‘A survey of people with epilepsy in relation to satisfaction, preferences and information provision’.
      ].
      Further, the ways that questions are asked (or not asked) by clinicians can influence the answers they receive from patients. For example, clinicians who serve as investigators in clinical trials know that waiting for study participants to spontaneously report potential treatment-related side effects during study visits is not as productive as directly asking questions, as is standard in clinical practice. Likewise, the actual words used in communication may inadvertently reinforce stigma and hamper communication, whether written or spoken, such as equating a person with their epilepsy and the degree to which their seizures are controlled by referring to the “intractable epileptic” rather than the “person with therapy-resistant seizures”. In addition, patients may convey different messages about how they are impacted by their disorder depending on whether they are asked about their “epilepsy” or their “seizures” [
      • Schachter S.C.
      • Shafer P.O.
      • Murphy W.
      The personal impact of epilepsy: correlations with seizure frequency, employment, cost of medical care, and satisfaction with physician care.
      ].
      Technology can help monitor clinical performance against quality indicators [
      • Fitzsimons M.
      • Dunleavy B.
      • O’Byrne P.
      • Dunne M.
      • Grimson J.
      • Kalra D.
      • et al.
      Assessing the quality of epilepsy care with an electronic patient record.
      ] and improve the efficiency and content of communication, but it can also be intrusive. The methods used by clinicians to input information into electronic medical records during patient visits may “prioritize the demands of the system over the needs of the patient” [
      • Toerien M.
      Using electronic patient records in practice: a focused review of the evidence of risks to the clinical interaction.
      ].
      These barriers and others may detract from the effectiveness of in-office discussions with patients and carers [
      • Kendall S.
      • Thompson D.
      • Couldridge L.
      The information needs of carers of adults diagnosed with epilepsy.
      ] about numerous critically-important topics such as SUDEP [
      • Ramachandrannair R.
      SUDEP: what do patients want to know?.
      ], pregnancy, stigma, sexual dysfunction, driving, disclosure, employment, and antiepileptic drug side effects. Topics that require multiple interactions and discussions over time, such as the evaluation process for epilepsy surgery [
      • Pieters H.C.
      • Iwaki T.
      • Vickrey B.G.
      • Mathern G.W.
      • Baca C.B.
      “It was five years of hell”: parental experiences of navigating and processing the slow and arduous time to pediatric resective epilepsy surgery.
      ], epilepsy associated with intellectual disability, and treatment non-adherence [
      • Shafer P.O.
      • Buchhalter J.
      Patient education: identifying risks and self-management approaches for adherence and sudden unexpected death in epilepsy.
      ,
      • Pakpour A.H.
      • Gholami M.
      • Esmaeili R.
      • Naghibi S.A.
      • Updegraff J.A.
      • Molloy G.J.
      • et al.
      A randomized controlled multimodal behavioral intervention trial for improving antiepileptic drug adherence.
      ], may be particularly impeded by communication barriers.
      Lastly, for patients treated by multiple health care providers, inadequate communication between clinicians can further exacerbate communication problems, which commonly occurs, for example, between primary care physicians and neurologists [
      • Rajpura A.
      • Sethi S.
      Evidence-based standards of care for adults with epilepsy—a literature review.
      ] as well as between neurologists and psychiatrists [
      • Kanner A.M.
      When did neurologists and psychiatrists stop talking to each other?.
      ]. Other forms of communication outside of doctors’ offices can either reinforce or weaken important in-office discussions, such as those between parents and their child with epilepsy [
      • O’Toole S.
      • Lambert V.
      • Gallagher P.
      • Shahwan A.
      • Austin J.K.
      Talking about epilepsy: challenges parents face when communicating with their child about epilepsy and epilepsy-related issues.
      ], within the family [
      • O’Toole S.
      • Benson A.
      • Lambert V.
      • Gallagher P.
      • Shahwan A.
      • Austin J.K.
      Family communication in the context of pediatric epilepsy: a systematic review.
      ], or when discussing epilepsy with non-relatives [
      • Benson A.
      • O’Toole S.
      • Lambert V.
      • Gallagher P.
      • Shahwan A.
      • Austin J.K.
      To tell or not to tell: a systematic review of the disclosure practices of children living with epilepsy and their parents.
      ].

      3. Strategies to enhance communication in epileptology

      Numerous available and emerging tools and strategies can potentially improve the efficiency of communication between patients and their epilepsy care providers, even given the barriers just described. A physician’s efforts to improve communication will not go unnoticed — a patient’s recollection of counseling during a doctor’s visit is positively associated with his or her perception of the care provider’s communication skills [
      • Moura L.M.V.R.
      • Carneiro T.S.
      • Thorn E.L.
      • Seitz M.P.
      • Hsu J.
      • Cole A.J.
      • et al.
      Patient perceptions of physician-documented quality care in epilepsy.
      ].
      The application of conversation analytic communication techniques, which can be learned during a one-day training session and which are based on asking open rather than leading questions, may enhance communication in the doctor’s office setting, giving patients “more conversational space to express their concerns” [
      • Jenkins L.
      • Cosgrove J.
      • Ekberg K.
      • Kheder A.
      • Sokhi D.
      • Reuber M.
      A brief conversation analytic communication intervention can change history-taking in the seizure clinic.
      ]. Epilepsy specialist nurses have an important role in communication and coordinating aspects of the care plan. Questionnaires filled out at home or in the doctor’s office may focus ensuing conversations on urgent issues, such as symptoms of depression and suicidality [
      • Mula M.
      • McGonigal A.
      • Micoulaud-Franchi J.A.
      • May T.W.
      • Labudda K.
      • Brandt C.
      Validation of rapid suicidality screening in epilepsy using the NDDIE.
      ]. Likewise, other tools that may be useful to spur meaningful discussions include stories written by persons with epilepsy and their families and friends [
      ,
      ] and art that depicts aspects of seizures and daily life with the diagnosis of epilepsy [
      • Schachter S.C.
      Visions: artists living with epilepsy.
      ]. Web-based information that is current, accurate, and understandable may supplement and reinforce information provided to patients in the clinic, and the internet can also be useful for counseling and medical evaluations, especially for patients who are unable to travel to see epilepsy specialists [
      • Milošević M.
      • Friedrich L.
      • Tomasović S.
      • Bielen I.
      Online epilepsy counseling in Croatia: what do users want to know?.
      ,
      • Patterson V.
      • Singh M.
      • Rajbhandari H.
      • Vishnubhatla S.
      Validation of a phone app for epilepsy diagnosis in India and Nepal.
      ]. Finally, community partners can augment patient self-empowerment [
      • Wagner J.L.
      • Brooks B.
      • Smith G.
      • St. Marie K.
      • Kellermann T.S.
      • Wilson D.
      • et al.
      Determining patient needs: a partnership with South Carolina Advocates for Epilepsy (SAFE).
      ] by supporting and facilitating communications from all sources.
      Some limitations of communication are inherent to epilepsy and require technological solutions and a common lexicon [
      • Buelow J.M.
      • Shafer P.
      • Shinnar R.
      • Austin J.
      • Dewar S.
      • Long L.
      • et al.
      Perspectives on seizure clusters: gaps in lexicon, awareness, and treatment.
      ]. For example, impaired ictal awareness can interfere with counting seizures or recognizing seizure clusters [
      • Blachut B.
      • Hoppe C.
      • Surges R.
      • Stahl J.
      • Elger C.E.
      • Helmstaedter C.
      Counting seizures: the primary outcome measure in epileptology from the patients' perspective.
      ], and short-term memory dysfunction may affect medication adherence. Emerging devices are designed to detect and log seizures, and text messaging and other application-based interventions may increase adherence, for example in adolescents with epilepsy [
      • Modi A.C.
      • Mann K.A.
      • Urso L.
      • Peugh J.
      Preliminary feasibility and efficacy of text messaging and application-based adherence interventions in adolescents with epilepsy.
      ].

      4. Conclusion and paths forward in health communication over the next 25 years

      On the occasion of the Epilepsy Action Diamond Jubilee, I suggested several ways in which the clinical and social management of epilepsy could be transformed [
      • Schachter S.C.
      What needs to change: goals for clinical and social management and research in the next 60 years.
      ]. The guiding principle was that today’s goals of “no seizures, no side effects” for persons with epilepsy should be broadened so that everyone with epilepsy, irrespective of their ethnic background, financial means or location, should be enabled to achieve their full potential, unburdened by the physical, psychological and social consequences of epilepsy.
      Enhanced communication is an integral part of the specific actions needed to achieve this vision. For example, increasing knowledge and changing attitudes and perceptions about epilepsy will necessitate a significant increase in ongoing efforts to provide educational programs, including those that are web-based, for all age groups and all stakeholders including persons with epilepsy, their family members, health professionals, community leaders, employers, policymakers, teachers, and first responders to eliminate stigma and improve access to appropriate medical care. Research is clearly needed to determine the best methods for communicating this knowledge so that it has the desired impact on attitudes, perceptions, and behavior.
      Second, establishing new models for the delivery of medical and psychosocial care to patients with epilepsy will require effective communication protocols to send educational materials, information about treatment response, side effects, mood disorders, etc. via secure internet linkages between patients, care providers, electronic medical records, and medical devices such as wearable seizure detection devices to improve the flow of information, medical decision-making, and patient self-empowerment. If properly conceived and executed, improving upon the accuracy of patient self-report of seizures and symptoms and enhancing patient safety by reducing the impact of seizures will increase the patient’s sense of mastery and self-empowerment and enable him or her to become an active and full partner in managing epilepsy, even for those persons in resource-constrained environments far from medical facilities but who nonetheless have internet access.
      Further research incorporating health economics and medical communication expertise are needed to demonstrate the cost effectiveness of in-person and internet-based communication, to design more effective communication protocols, and to assess the resulting health outcomes, knowledge gains, and changes in behaviors of persons with epilepsy. Finally, greater applications of conversation analytics, as championed by Seizure editor-in-chief Markus Reuber and colleagues, have a huge untapped potential for improving in-person communication for the broad range of topics that both make epilepsy unique and that are of crucial importance to persons with epilepsy and their families.

      Conflict of interest statement

      The author has no conflict of interest.

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