YEBEH-04210; No of Pages 5 Epilepsy & Behavior xxx (2015) xxx–xxx
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Targeted Review
Shared decision-making in epilepsy management W.O. Pickrell a,b,⁎, G. Elwyn c, P.E.M. Smith a a b c
Welsh Epilepsy Centre, University Hospital of Wales, Cardiff, UK Neurology and Molecular Neuroscience, College of Medicine, Swansea University, Swansea, UK The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, USA
a r t i c l e
i n f o
Article history: Revised 21 January 2015 Accepted 22 January 2015 Available online xxxx Keywords: Epilepsy Shared decision-making Decision aids
a b s t r a c t Policy makers, clinicians, and patients increasingly recognize the need for greater patient involvement in clinical decision-making. Shared decision-making helps address these concerns by providing a framework for clinicians and patients to make decisions together using the best evidence. Shared decision-making is applicable to situations where several acceptable options exist (clinical equipoise). Such situations occur commonly in epilepsy, for example, in decisions regarding the choice of medication, treatment in pregnancy, and medication withdrawal. A talk model is a way of implementing shared decision-making during consultations, and decision aids are useful tools to assist in the process. Although there is limited evidence available for shared decision-making in epilepsy, there are several benefits of shared decision-making in general including improved decision quality, more informed choices, and better treatment concordance. © 2015 Elsevier Inc. All rights reserved.
1. Introduction Health care systems throughout the world face increasing challenges from demand, expectation, and austerity. Prudent health care faces these challenges by actively taking account of the needs and circumstances of patients and actively avoiding wasteful care. A significant part of prudent health care is promoting equity between the people who provide and who use services and ensuring patient satisfaction [1]. Patient-centered care, which is respectful of and responsive to individual patient preferences, needs, and values, is also recognized as an important component of modern health care [2]. One of the most common reasons for patient dissatisfaction is feeling not properly informed about treatment or management options [3]. Surveys of patients with epilepsy have concluded that patients welcome greater involvement in such discussions [4,5]. Despite this, there is evidence that patients are not involved to a sufficient degree in these decisions in epilepsy clinics. For example, the decision-making in selecting antiepileptic drug choices, investigation options, and treatments was perceived by patients to be clinician-dominated processes [6]. Shared decision-making helps to address these concerns by attempting to involve the patient and clinician equally in the decisionmaking process, providing more patient-centered care [7]. National policies and guidelines have recognized this—including guidelines on epilepsy [8]—and also recognize the potential savings on resources through greater patient involvement in decision-making. In a 2010 ⁎ Corresponding author at: Institute of Life Sciences, College of Medicine, Swansea University, SA2 8PP, UK. Tel.: +44 1792 295134. E-mail address: [email protected] (W.O. Pickrell).
policy document, the UK government envisaged that shared decisionmaking will become the norm: ‘no decision about me without me’ [9]. This paper explores shared decision-making for people with epilepsy, through the following five questions: 1. What is shared decision-making? 2. What is the relevance of shared decision-making for people with epilepsy? 3. How can we implement shared decision-making in epilepsy consultations? 4. What tools are available to assist in shared decision-making for people with epilepsy? 5. What are the benefits of shared decision-making for people with epilepsy?
2. Key questions 2.1. What is shared decision-making? Shared decision-making is an approach where clinicians and patients make decisions together using the best available evidence [10,11]. It promotes active two-way participatory collaboration between the clinician and patient. Clinicians are experts in disease, treatment options, probabilities, and prognosis, whereas patients are experts in their preferences, values, attitudes to risk, and social circumstances. Shared decision-making is applicable to clinical situations where more than one reasonable option exists for that person—a position of clinical equipoise. The correct option for a particular individual may
http://dx.doi.org/10.1016/j.yebeh.2015.01.033 1525-5050/© 2015 Elsevier Inc. All rights reserved.
Please cite this article as: Pickrell WO, et al, Shared decision-making in epilepsy management, Epilepsy Behav (2015), http://dx.doi.org/10.1016/ j.yebeh.2015.01.033
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W.O. Pickrell et al. / Epilepsy & Behavior xxx (2015) xxx–xxx
Table 1 Examples of clinical scenarios in epilepsy amenable to shared decision-making. Anna is a 29-year-old woman with genetic generalized epilepsy. She has been seizure-free for one year since taking sodium valproate. Previously, she took lamotrigine but was having daily myoclonic seizures and generalized tonic–clonic seizures every month. She now wants to start a family and has come to discuss treatment options. John is a 48-year-old man with structural focal epilepsy due to right-sided hippocampal sclerosis. Despite trying four different antiepileptic drugs, he continues to experience focal dyscognitive seizures around three times a month, causing a great deal of disruption to his life. He wants to know whether epilepsy surgery would be an option for him.
Fig. 1. The talk model for shared decision-making [10,12].
depend on their personal preference, lifestyle, social circumstances, and cultural and religious beliefs. Shared decision-making enables patient-centered care — care that is responsive to individual personal preferences, needs, and values and assures that patient values guide all clinical decisions. In some ways, shared decision-making can be thought of as the “pinnacle of patientcentered care” [7]. A shared decision-making approach is similar to another patientcentered care method, motivational interviewing. Shared decision supports the decision-making process, whereas motivational interviewing guides behavior change [12]. At the heart of both methods is the ethical principle of self-determination [13]. Shared decision-making can be thought of as a ‘middle ground’ between a completely paternalistic approach and a completely autonomous approach.
2.2. What is the relevance of shared decision-making for people with epilepsy? Shared decision-making is relevant to all aspects of clinical medicine. It is especially relevant to long-term conditions, such as epilepsy. Table 1 illustrates two relatively common clinical scenarios in the epilepsy clinic where there are several acceptable management options (clinical equipoise). The best option for Anna might be to continue to take sodium
valproate (perhaps forgoing her plans for pregnancy), to switch to levetiracetam, or to revert to lamotrigine; John might want to undergo surgery (with all its perceived risks and benefits), or he might be happier to try another medication. Shared decision-making would help in each scenario to ensure that each individual makes the best decision for them. Of course, there are many more examples involving clinical equipoise (or near equipoise) in the epilepsy clinic where shared decision-making could be useful and effective.
2.3. How can we implement shared decision-making in epilepsy consultations? A useful model for structuring a shared decision-making clinical encounter is as follows: team talk, option talk, and decision talk (see also Fig. 1) [13,14]. Team talk involves letting the patient know that they will be supported to consider and compare alternatives, option talk involves providing more detailed information about the options, and decision talk involves supporting the decision and assisting the patient to reach a decision (see Table 2 for an example). A more detailed model for shared decision-making, collaborative deliberation, is the foundation for the talk model (see Elwyn et al. [15]). It is important to provide effective decision support during option talk and decision talk. This can involve providing facts, figures, and
Table 2 An example of how to structure a clinical epilepsy consultation to facilitate shared decision-making (for a background of the scenario, see Table 1). Team talk Clinician: We have three options for your treatment. You can continue to take sodium valproate, switch back to lamotrigine, or try a new drug, levetiracetam. Each option involves a balance between you getting the most effective treatment for your epilepsy and reducing any risks to your baby. Anna: I know that sodium valproate can be harmful during pregnancy, but my epilepsy is well controlled at the moment and changing drugs has always been a problem in the past. Clinician: Yes, I agree. I think it is important that we consider the options carefully as we need to help you to make the decision that is right for you and one that you are happy with. I know this might seem difficult—I will support you to do this. Option talk Clinician: Have a look at this sheet (Option Grid®) which gives some more information about the options. If it is ok with you, I will finish my paperwork while you read the sheet (see Fig. 3 for the Option Grid®), and feel free to write on it. Clinician: How did you get on? What is important for you here? Would you like me to go over anything? Anna: Ok. I think I really do not want to take anything that might harm the baby, but my epilepsy was worse when I was taking lamotrigine. Do you think that levetiracetam is going to be any better at controlling my seizures? Clinician: There is certainly less chance that levetiracetam would harm your baby when compared to valproate. In terms of the epilepsy, there is every chance that levetiracetam will control your epilepsy at least as well as lamotrigine and probably better — but we cannot be sure until you have tried it. Decision talk Anna: Ok. Even though my epilepsy has been at its best for years, I think I would like to try levetiracetam if that is ok as I really want to reduce the risk to the baby as much as possible. Clinician: Can I just check that you are happy with not being able to drive for six months while changing from valproate to levetiracetam? Anna: Yes, that is ok — I saw that on the sheet. I am not driving much at the moment as I am working from home most of the time, so it should not be too much of a problem for me.
Please cite this article as: Pickrell WO, et al, Shared decision-making in epilepsy management, Epilepsy Behav (2015), http://dx.doi.org/10.1016/ j.yebeh.2015.01.033
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risks tailored to the individual in order to assist the decision-making process. Decision aids can help to provide decision support (see next section). Prompting patients about decision-making before the clinical encounter can help the shared decision-making process. For example, patients might ask the following questions: • What are my options? • What are the pros and cons of each option for me? • How can I get support to help me to make a decision that is right for me? Getting patients to ask these questions can improve the quality of information provided by physicians and facilitate shared decision-making [16]. Prompts can be provided in appointment letters or in posters in clinic waiting rooms. 2.4. What tools are available to assist in shared decision-making for people with epilepsy? Patient decision aids are tools to assist in shared decision-making. Decision aids are available in a variety of formats including leaflets, videos, and interactive web-based tools. Decision aids help patients to understand the pros and cons of available options, are effective in improving patients' knowledge and risk perceptions, and can facilitate shared decisionmaking without substantially increasing consultation times [10,17]. Decision aids can often be useful for patients away from clinic when they can consider their options without the same time constraints. Long-form decision aids are designed to be used by patients away from clinic as they are detailed and can take a while to work through. They frequently take the form of interactive web-based modules that patients can complete at their own pace. Although there are several long decision aids used for other diseases (see the Useful resources section for websites), to our knowledge, there are no specific long decision aids for epilepsy. Short-form decision aids are designed to be used by patients both during and away from clinical encounters. They typically include information in short statements or graphic form and provide accurate, concise information; they encourage further questions and interaction [9]. Examples of short decision aids include short leaflets, graphics such as Cates Plots, and Option Grids®. 2.4.1. Option Grids® An Option Grid® is a single page that contains a table of options (see Fig. 2 for an example). Frequently-asked questions form the rows of the table, and answers to the questions relating to each option form the columns. Typically, there are around six questions and two to three options. Each option is researched using the best available evidence and carefully edited so that someone with a reading age of around twelve can read the entire sheet in a few minutes [18]. Option Grids® can be given to the patient to read during the consultation. They can also be used away from the clinic as an aide-mémoire or to facilitate discussions with family and friends [19]. There are currently two epilepsy Option Grids® available: epilepsy surgery for hippocampal sclerosis and epilepsy treatments when considering pregnancy; a third on withdrawing medication is in development. The latest versions can be downloaded from the website (www.optiongrid.org). 2.4.2. Risk prediction Although there are few epilepsy-specific decision aids, other tools, not specifically designed as decision aids, can help to support the decision-making process. Data or statistical models from trials can be used to help estimate patients' personal risks and probabilities. A spreadsheet using data from the MESS (MRC Multicentre trial for Early Epilepsy and Single Seizures) study, for example, can provide estimates of recurrence risk after a single seizure (see
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Fig. 3) [20]. Similar risk predictions could be made for seizure recurrence after antiepileptic drug withdrawal [21]. 2.4.3. Patient care plans A recent Australian survey concluded that people with epilepsy wanted to be more involved in writing their epilepsy management plan [5]. Patient care plans can be filled in by the patient and brought to appointments for review by the clinician [22]. Patients can carefully consider the sections on individual preferences and treatment goals in their own time. Clinician review of the plans could be a useful adjunct to the shared decision-making process. 2.5. What are the benefits of shared decision-making for people with epilepsy? There are several benefits of shared decision-making in general. It encourages patient autonomy as well as answering patients' and
Key questions (answered) 1. What is shared decision-making? Shared decision-making is an approach where patients and clinicians make decisions together using the best available evidence. It is applicable in situations of clinical equipoise (more than one reasonable option exists for the individual). It is particularly relevant for people with long-term conditions where clinicians can encourage patients to take on some responsibility for long-term management. 2. What is the relevance of shared decision-making for people with epilepsy? Shared decision-making is highly relevant to epilepsy management, both for short-term and long-term decisions. There are several situations in the epilepsy clinic where clear clinical equipoise means that personal preferences and priorities must shape the management decision. Examples of shared decision-making being used in epilepsy management include the following: treatment decisions during pregnancy, consideration of epilepsy surgery, and considering either antiepileptic drug use after a first seizure or antiepileptic drug withdrawal in people who are seizure-free. 3. How can we implement shared decision-making in epilepsy consultations? A talk model is a useful way of implementing shared decisionmaking. Team talk involves letting the patient know that there are several options, option talk involves providing more detailed information about the options, and decision talk involves assisting the patient to reach a decision. 4. What tools are available to assist in shared decision-making for people with epilepsy? Decision aids, which help patients understand the pros and cons of available options, can assist in shared decisionmaking. Decisions aids can also be used outside of the clinic. Several short decision aids, in the form of Option Grids®, are available for epilepsy management. To date, there are no long decision aids available for epilepsy management. 5. What are the benefits of shared decision-making for people with epilepsy? There is evidence that shared decision-making offers several benefits, including more informed choices, improved decision quality, and better treatment concordance. There is a lack of specific evidence regarding shared decision-making in epilepsy, and there is a need for clinical trials to address this issue.
Please cite this article as: Pickrell WO, et al, Shared decision-making in epilepsy management, Epilepsy Behav (2015), http://dx.doi.org/10.1016/ j.yebeh.2015.01.033
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Fig. 2. Epilepsy treatments when considering pregnancy (Option Grid®, ISBN 978-0-9571887-3-0) [11,13].
policy makers' calls for improved and collaborative decisionmaking. One study showed that doctors who became patients learned from their experiences and offered more explanations to patients, detailing their clinical reasoning and uncertainties more explicitly [23]. Shared decision-making offers a framework to implement these changes. Decision aids form a part of the shared decision-making process and result in more informed choices, a better understanding of risks and options, and improved decision quality [17,24]. A systematic review of
the effects of shared decision-making found some evidence that patients adhere better to treatment after shared decision-making [25]. The generic benefits of shared decision-making described above are all transferable to the epilepsy clinic. Two specific examples from epilepsy management which have been identified as priorities are the need for the following: improved parental involvement in pediatric epilepsy decisions and improved information and a better decision-making process for people undertaking epilepsy surgery [26,27]. Shared decision-making could be used to address
Please cite this article as: Pickrell WO, et al, Shared decision-making in epilepsy management, Epilepsy Behav (2015), http://dx.doi.org/10.1016/ j.yebeh.2015.01.033
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Fig. 3. Seizure recurrence risk estimator following a single seizure (MESS study [18]).
the issues in both examples as well as other treatment and management issues in epilepsy. There is very little evidence relating to shared decision-making in epilepsy specifically. Good quality clinical trials involving shared decision-making in epilepsy are required to address this knowledge gap. Conflict of interest Owen Pickrell and Phil Smith received research registrar salary from UCB Pharma through an unrestricted grant to Wales Epilepsy Research Network 2007–12. Glyn Elwyn is a consultant for Emmi Solutions, producer of patient decision support, and the founder of Option Grid Collaborative. Useful resources Shared decision-making http://sdm.rightcare.nhs.uk. Examples of long decision aids AQuA: http://www.advancingqualityalliance.nhs.uk/sdm http://decisionaid.ohri.ca/AZinvent.php shareddecisions.mayoclinic.org http://sdm.rightcare.nhs.uk/pda/. Option Grids® http://www.optiongrid.org. References [1] Achieving prudent healthcare in NHS Wales. http://www.1000livesplus.wales.nhs. uk/sitesplus/documents/1011/Achieving%20prudent%20healthcare%20in%20NHS% 20Wales%20paper%20Revised%20version%20%28FINAL%29.pdf. [Accessed 2/10/14].
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[2] Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. http://iom.edu/~/media/Files/Report%20Files/2001/Crossing-the-QualityChasm/Quality%20Chasm%202001%20%20report%20brief.pdf. [Accessed 17/1/2015]. [3] Coulter A, Cleary PD. Patients' experiences with hospital care in five countries. Health Aff (Millwood) 2001;20:244–52. [4] Ross J, Stefan H, Schauble B, Day R, Sander J. European survey of the level of satisfaction of patients and physicians in the management of epilepsy in general practice. Epilepsy Behav 2010;19:36–42. [5] Bellon M, Pfeiffer W, Maurici V. Choice and control: how involved are people with epilepsy and their families in the management of their epilepsy? Results from an Australian survey in the disability sector. Epilepsy Behav 2014;37:227–32. [6] McCorry D, Marson T, Jacoby A. Understanding routine antiepileptic drug decisions: a qualitative analysis of patients' accounts of hospital consultations. Epilepsy Behav 2009;14:210–4. [7] Barry MJ, Edgman-Levitan S. Shared decision making—pinnacle of patient-centered care. N Engl J Med 2012;366:780–1. [8] National Institute for Health and Care Excellence (NICE). The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care (CG137). https://www.nice.org.uk/guidance/cg137; 2010. [Accessed 2nd October 2014]. [9] UK government, Department of Health. Equity and excellence: liberating the NHS. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/ 213823/dh_117794.pdf; 2010. [Last Accessed 2/10/2014]. [10] Elwyn G, Laitner S, Coulter A, Walker E, Watson P, Thomson R. Implementing shared decision making in the NHS. BMJ 2010;341:c5146. [11] Stiggelbout AM, Van der Weijden T, De Wit MP, Frosch D, Légaré F, Montori VM, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ 2012;344:e256. [12] Elwyn G, Dehlendorf C, Epstein RM, Marrin K, White J, Frosch DL. Shared decision making and motivational interviewing: achieving patient-centered care across the spectrum of health care problems. Ann Fam Med 2014;12:270–5. [13] Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. J Gen Intern Med 2012;27: 1361–7. [14] Mulley AG, Trimble C, Elwyn G. Stop the silent misdiagnosis: patients' preferences matter. BMJ 2012;345 [e6572-e6572]. [15] Elwyn G, Lloyd A, May C, van der Weijden T, Stiggelbout A, Edwards A, et al. Collaborative deliberation: a model for patient care. Patient Educ Couns 2014;97:158–64. [16] Shepherd HL, Barratt A, Trevena LJ, McGeechan K, Carey K, Epstein RM, et al. Three questions that patients can ask to improve the quality of information physicians give about treatment options: a cross-over trial. Patient Educ Couns 2011;84: 379–85. [17] Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014;1:CD001431. [18] Elwyn G, Lloyd A, Joseph-Williams N, Cording E, Thomson R, Durand MA, et al. Option Grids®: shared decision-making made easier. Patient Educ Couns 2013;90: 207–12. [19] Seal RP, Kynaston J, Elwyn G, Smith PE. Using an Option Grid® in shared decision making. Pract Neurol 2014;14:54–6. [20] Kim LG, Johnson TL, Marson AG, Chadwick DW, MRC MESS Study group. Prediction of risk of seizure recurrence after a single seizure and early epilepsy: further results from the MESS trial. Lancet Neurol 2006;5:317–22. [21] Prognostic index for recurrence of seizures after remission of epilepsy. Medical Research Council Antiepileptic Drug Withdrawal Study Group. BMJ 1993;306: 1374–8. [22] Patient care plans. https://www.epilepsy.org.uk/professionals/healthcare/patientcare-plan. [Last accessed 2/10/2014]. [23] Klitzman R. Improving education on doctor–patient relationships and communication: lessons from doctors who become patients. Acad Med 2006;81:447–53. [24] O'Connor AM, Bennett C, Stacey D, Barry MJ, Col NF, Eden KB, et al. Do patient decision aids meet effectiveness criteria of the international patient decision aid standards collaboration? A systematic review and meta-analysis. Med Decis Making 2007;27:554–74. [25] Joosten EA, DeFuentes-Merillas L, de Weert GH, Sensky T, van der Staak CP, de Jong CA. Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychother Psychosom 2008;77: 219–26. [26] Berg AT, Baca CB, Loddenkemper T, Vickrey BG, Dlugos D. Priorities in pediatric epilepsy research: improving children's futures today. Neurology 2013;81:1166–75. [27] Choi H, Pargeon K, Bausell R, Wong JB, Mendiratta A, Bakken S. Temporal lobe epilepsy surgery: what do patients want to know? Epilepsy Behav 2011;22:479–82.
Please cite this article as: Pickrell WO, et al, Shared decision-making in epilepsy management, Epilepsy Behav (2015), http://dx.doi.org/10.1016/ j.yebeh.2015.01.033
Contents lists available at ScienceDirect
Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Targeted Review
Shared decision-making in epilepsy management W.O. Pickrell a,b,⁎, G. Elwyn c, P.E.M. Smith a a b c
Welsh Epilepsy Centre, University Hospital of Wales, Cardiff, UK Neurology and Molecular Neuroscience, College of Medicine, Swansea University, Swansea, UK The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, USA
a r t i c l e
i n f o
Article history: Revised 21 January 2015 Accepted 22 January 2015 Available online xxxx Keywords: Epilepsy Shared decision-making Decision aids
a b s t r a c t Policy makers, clinicians, and patients increasingly recognize the need for greater patient involvement in clinical decision-making. Shared decision-making helps address these concerns by providing a framework for clinicians and patients to make decisions together using the best evidence. Shared decision-making is applicable to situations where several acceptable options exist (clinical equipoise). Such situations occur commonly in epilepsy, for example, in decisions regarding the choice of medication, treatment in pregnancy, and medication withdrawal. A talk model is a way of implementing shared decision-making during consultations, and decision aids are useful tools to assist in the process. Although there is limited evidence available for shared decision-making in epilepsy, there are several benefits of shared decision-making in general including improved decision quality, more informed choices, and better treatment concordance. © 2015 Elsevier Inc. All rights reserved.
1. Introduction Health care systems throughout the world face increasing challenges from demand, expectation, and austerity. Prudent health care faces these challenges by actively taking account of the needs and circumstances of patients and actively avoiding wasteful care. A significant part of prudent health care is promoting equity between the people who provide and who use services and ensuring patient satisfaction [1]. Patient-centered care, which is respectful of and responsive to individual patient preferences, needs, and values, is also recognized as an important component of modern health care [2]. One of the most common reasons for patient dissatisfaction is feeling not properly informed about treatment or management options [3]. Surveys of patients with epilepsy have concluded that patients welcome greater involvement in such discussions [4,5]. Despite this, there is evidence that patients are not involved to a sufficient degree in these decisions in epilepsy clinics. For example, the decision-making in selecting antiepileptic drug choices, investigation options, and treatments was perceived by patients to be clinician-dominated processes [6]. Shared decision-making helps to address these concerns by attempting to involve the patient and clinician equally in the decisionmaking process, providing more patient-centered care [7]. National policies and guidelines have recognized this—including guidelines on epilepsy [8]—and also recognize the potential savings on resources through greater patient involvement in decision-making. In a 2010 ⁎ Corresponding author at: Institute of Life Sciences, College of Medicine, Swansea University, SA2 8PP, UK. Tel.: +44 1792 295134. E-mail address: [email protected] (W.O. Pickrell).
policy document, the UK government envisaged that shared decisionmaking will become the norm: ‘no decision about me without me’ [9]. This paper explores shared decision-making for people with epilepsy, through the following five questions: 1. What is shared decision-making? 2. What is the relevance of shared decision-making for people with epilepsy? 3. How can we implement shared decision-making in epilepsy consultations? 4. What tools are available to assist in shared decision-making for people with epilepsy? 5. What are the benefits of shared decision-making for people with epilepsy?
2. Key questions 2.1. What is shared decision-making? Shared decision-making is an approach where clinicians and patients make decisions together using the best available evidence [10,11]. It promotes active two-way participatory collaboration between the clinician and patient. Clinicians are experts in disease, treatment options, probabilities, and prognosis, whereas patients are experts in their preferences, values, attitudes to risk, and social circumstances. Shared decision-making is applicable to clinical situations where more than one reasonable option exists for that person—a position of clinical equipoise. The correct option for a particular individual may
http://dx.doi.org/10.1016/j.yebeh.2015.01.033 1525-5050/© 2015 Elsevier Inc. All rights reserved.
Please cite this article as: Pickrell WO, et al, Shared decision-making in epilepsy management, Epilepsy Behav (2015), http://dx.doi.org/10.1016/ j.yebeh.2015.01.033
2
W.O. Pickrell et al. / Epilepsy & Behavior xxx (2015) xxx–xxx
Table 1 Examples of clinical scenarios in epilepsy amenable to shared decision-making. Anna is a 29-year-old woman with genetic generalized epilepsy. She has been seizure-free for one year since taking sodium valproate. Previously, she took lamotrigine but was having daily myoclonic seizures and generalized tonic–clonic seizures every month. She now wants to start a family and has come to discuss treatment options. John is a 48-year-old man with structural focal epilepsy due to right-sided hippocampal sclerosis. Despite trying four different antiepileptic drugs, he continues to experience focal dyscognitive seizures around three times a month, causing a great deal of disruption to his life. He wants to know whether epilepsy surgery would be an option for him.
Fig. 1. The talk model for shared decision-making [10,12].
depend on their personal preference, lifestyle, social circumstances, and cultural and religious beliefs. Shared decision-making enables patient-centered care — care that is responsive to individual personal preferences, needs, and values and assures that patient values guide all clinical decisions. In some ways, shared decision-making can be thought of as the “pinnacle of patientcentered care” [7]. A shared decision-making approach is similar to another patientcentered care method, motivational interviewing. Shared decision supports the decision-making process, whereas motivational interviewing guides behavior change [12]. At the heart of both methods is the ethical principle of self-determination [13]. Shared decision-making can be thought of as a ‘middle ground’ between a completely paternalistic approach and a completely autonomous approach.
2.2. What is the relevance of shared decision-making for people with epilepsy? Shared decision-making is relevant to all aspects of clinical medicine. It is especially relevant to long-term conditions, such as epilepsy. Table 1 illustrates two relatively common clinical scenarios in the epilepsy clinic where there are several acceptable management options (clinical equipoise). The best option for Anna might be to continue to take sodium
valproate (perhaps forgoing her plans for pregnancy), to switch to levetiracetam, or to revert to lamotrigine; John might want to undergo surgery (with all its perceived risks and benefits), or he might be happier to try another medication. Shared decision-making would help in each scenario to ensure that each individual makes the best decision for them. Of course, there are many more examples involving clinical equipoise (or near equipoise) in the epilepsy clinic where shared decision-making could be useful and effective.
2.3. How can we implement shared decision-making in epilepsy consultations? A useful model for structuring a shared decision-making clinical encounter is as follows: team talk, option talk, and decision talk (see also Fig. 1) [13,14]. Team talk involves letting the patient know that they will be supported to consider and compare alternatives, option talk involves providing more detailed information about the options, and decision talk involves supporting the decision and assisting the patient to reach a decision (see Table 2 for an example). A more detailed model for shared decision-making, collaborative deliberation, is the foundation for the talk model (see Elwyn et al. [15]). It is important to provide effective decision support during option talk and decision talk. This can involve providing facts, figures, and
Table 2 An example of how to structure a clinical epilepsy consultation to facilitate shared decision-making (for a background of the scenario, see Table 1). Team talk Clinician: We have three options for your treatment. You can continue to take sodium valproate, switch back to lamotrigine, or try a new drug, levetiracetam. Each option involves a balance between you getting the most effective treatment for your epilepsy and reducing any risks to your baby. Anna: I know that sodium valproate can be harmful during pregnancy, but my epilepsy is well controlled at the moment and changing drugs has always been a problem in the past. Clinician: Yes, I agree. I think it is important that we consider the options carefully as we need to help you to make the decision that is right for you and one that you are happy with. I know this might seem difficult—I will support you to do this. Option talk Clinician: Have a look at this sheet (Option Grid®) which gives some more information about the options. If it is ok with you, I will finish my paperwork while you read the sheet (see Fig. 3 for the Option Grid®), and feel free to write on it. Clinician: How did you get on? What is important for you here? Would you like me to go over anything? Anna: Ok. I think I really do not want to take anything that might harm the baby, but my epilepsy was worse when I was taking lamotrigine. Do you think that levetiracetam is going to be any better at controlling my seizures? Clinician: There is certainly less chance that levetiracetam would harm your baby when compared to valproate. In terms of the epilepsy, there is every chance that levetiracetam will control your epilepsy at least as well as lamotrigine and probably better — but we cannot be sure until you have tried it. Decision talk Anna: Ok. Even though my epilepsy has been at its best for years, I think I would like to try levetiracetam if that is ok as I really want to reduce the risk to the baby as much as possible. Clinician: Can I just check that you are happy with not being able to drive for six months while changing from valproate to levetiracetam? Anna: Yes, that is ok — I saw that on the sheet. I am not driving much at the moment as I am working from home most of the time, so it should not be too much of a problem for me.
Please cite this article as: Pickrell WO, et al, Shared decision-making in epilepsy management, Epilepsy Behav (2015), http://dx.doi.org/10.1016/ j.yebeh.2015.01.033
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risks tailored to the individual in order to assist the decision-making process. Decision aids can help to provide decision support (see next section). Prompting patients about decision-making before the clinical encounter can help the shared decision-making process. For example, patients might ask the following questions: • What are my options? • What are the pros and cons of each option for me? • How can I get support to help me to make a decision that is right for me? Getting patients to ask these questions can improve the quality of information provided by physicians and facilitate shared decision-making [16]. Prompts can be provided in appointment letters or in posters in clinic waiting rooms. 2.4. What tools are available to assist in shared decision-making for people with epilepsy? Patient decision aids are tools to assist in shared decision-making. Decision aids are available in a variety of formats including leaflets, videos, and interactive web-based tools. Decision aids help patients to understand the pros and cons of available options, are effective in improving patients' knowledge and risk perceptions, and can facilitate shared decisionmaking without substantially increasing consultation times [10,17]. Decision aids can often be useful for patients away from clinic when they can consider their options without the same time constraints. Long-form decision aids are designed to be used by patients away from clinic as they are detailed and can take a while to work through. They frequently take the form of interactive web-based modules that patients can complete at their own pace. Although there are several long decision aids used for other diseases (see the Useful resources section for websites), to our knowledge, there are no specific long decision aids for epilepsy. Short-form decision aids are designed to be used by patients both during and away from clinical encounters. They typically include information in short statements or graphic form and provide accurate, concise information; they encourage further questions and interaction [9]. Examples of short decision aids include short leaflets, graphics such as Cates Plots, and Option Grids®. 2.4.1. Option Grids® An Option Grid® is a single page that contains a table of options (see Fig. 2 for an example). Frequently-asked questions form the rows of the table, and answers to the questions relating to each option form the columns. Typically, there are around six questions and two to three options. Each option is researched using the best available evidence and carefully edited so that someone with a reading age of around twelve can read the entire sheet in a few minutes [18]. Option Grids® can be given to the patient to read during the consultation. They can also be used away from the clinic as an aide-mémoire or to facilitate discussions with family and friends [19]. There are currently two epilepsy Option Grids® available: epilepsy surgery for hippocampal sclerosis and epilepsy treatments when considering pregnancy; a third on withdrawing medication is in development. The latest versions can be downloaded from the website (www.optiongrid.org). 2.4.2. Risk prediction Although there are few epilepsy-specific decision aids, other tools, not specifically designed as decision aids, can help to support the decision-making process. Data or statistical models from trials can be used to help estimate patients' personal risks and probabilities. A spreadsheet using data from the MESS (MRC Multicentre trial for Early Epilepsy and Single Seizures) study, for example, can provide estimates of recurrence risk after a single seizure (see
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Fig. 3) [20]. Similar risk predictions could be made for seizure recurrence after antiepileptic drug withdrawal [21]. 2.4.3. Patient care plans A recent Australian survey concluded that people with epilepsy wanted to be more involved in writing their epilepsy management plan [5]. Patient care plans can be filled in by the patient and brought to appointments for review by the clinician [22]. Patients can carefully consider the sections on individual preferences and treatment goals in their own time. Clinician review of the plans could be a useful adjunct to the shared decision-making process. 2.5. What are the benefits of shared decision-making for people with epilepsy? There are several benefits of shared decision-making in general. It encourages patient autonomy as well as answering patients' and
Key questions (answered) 1. What is shared decision-making? Shared decision-making is an approach where patients and clinicians make decisions together using the best available evidence. It is applicable in situations of clinical equipoise (more than one reasonable option exists for the individual). It is particularly relevant for people with long-term conditions where clinicians can encourage patients to take on some responsibility for long-term management. 2. What is the relevance of shared decision-making for people with epilepsy? Shared decision-making is highly relevant to epilepsy management, both for short-term and long-term decisions. There are several situations in the epilepsy clinic where clear clinical equipoise means that personal preferences and priorities must shape the management decision. Examples of shared decision-making being used in epilepsy management include the following: treatment decisions during pregnancy, consideration of epilepsy surgery, and considering either antiepileptic drug use after a first seizure or antiepileptic drug withdrawal in people who are seizure-free. 3. How can we implement shared decision-making in epilepsy consultations? A talk model is a useful way of implementing shared decisionmaking. Team talk involves letting the patient know that there are several options, option talk involves providing more detailed information about the options, and decision talk involves assisting the patient to reach a decision. 4. What tools are available to assist in shared decision-making for people with epilepsy? Decision aids, which help patients understand the pros and cons of available options, can assist in shared decisionmaking. Decisions aids can also be used outside of the clinic. Several short decision aids, in the form of Option Grids®, are available for epilepsy management. To date, there are no long decision aids available for epilepsy management. 5. What are the benefits of shared decision-making for people with epilepsy? There is evidence that shared decision-making offers several benefits, including more informed choices, improved decision quality, and better treatment concordance. There is a lack of specific evidence regarding shared decision-making in epilepsy, and there is a need for clinical trials to address this issue.
Please cite this article as: Pickrell WO, et al, Shared decision-making in epilepsy management, Epilepsy Behav (2015), http://dx.doi.org/10.1016/ j.yebeh.2015.01.033
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Fig. 2. Epilepsy treatments when considering pregnancy (Option Grid®, ISBN 978-0-9571887-3-0) [11,13].
policy makers' calls for improved and collaborative decisionmaking. One study showed that doctors who became patients learned from their experiences and offered more explanations to patients, detailing their clinical reasoning and uncertainties more explicitly [23]. Shared decision-making offers a framework to implement these changes. Decision aids form a part of the shared decision-making process and result in more informed choices, a better understanding of risks and options, and improved decision quality [17,24]. A systematic review of
the effects of shared decision-making found some evidence that patients adhere better to treatment after shared decision-making [25]. The generic benefits of shared decision-making described above are all transferable to the epilepsy clinic. Two specific examples from epilepsy management which have been identified as priorities are the need for the following: improved parental involvement in pediatric epilepsy decisions and improved information and a better decision-making process for people undertaking epilepsy surgery [26,27]. Shared decision-making could be used to address
Please cite this article as: Pickrell WO, et al, Shared decision-making in epilepsy management, Epilepsy Behav (2015), http://dx.doi.org/10.1016/ j.yebeh.2015.01.033
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Fig. 3. Seizure recurrence risk estimator following a single seizure (MESS study [18]).
the issues in both examples as well as other treatment and management issues in epilepsy. There is very little evidence relating to shared decision-making in epilepsy specifically. Good quality clinical trials involving shared decision-making in epilepsy are required to address this knowledge gap. Conflict of interest Owen Pickrell and Phil Smith received research registrar salary from UCB Pharma through an unrestricted grant to Wales Epilepsy Research Network 2007–12. Glyn Elwyn is a consultant for Emmi Solutions, producer of patient decision support, and the founder of Option Grid Collaborative. Useful resources Shared decision-making http://sdm.rightcare.nhs.uk. Examples of long decision aids AQuA: http://www.advancingqualityalliance.nhs.uk/sdm http://decisionaid.ohri.ca/AZinvent.php shareddecisions.mayoclinic.org http://sdm.rightcare.nhs.uk/pda/. Option Grids® http://www.optiongrid.org. References [1] Achieving prudent healthcare in NHS Wales. http://www.1000livesplus.wales.nhs. uk/sitesplus/documents/1011/Achieving%20prudent%20healthcare%20in%20NHS% 20Wales%20paper%20Revised%20version%20%28FINAL%29.pdf. [Accessed 2/10/14].
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[2] Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. http://iom.edu/~/media/Files/Report%20Files/2001/Crossing-the-QualityChasm/Quality%20Chasm%202001%20%20report%20brief.pdf. [Accessed 17/1/2015]. [3] Coulter A, Cleary PD. Patients' experiences with hospital care in five countries. Health Aff (Millwood) 2001;20:244–52. [4] Ross J, Stefan H, Schauble B, Day R, Sander J. European survey of the level of satisfaction of patients and physicians in the management of epilepsy in general practice. Epilepsy Behav 2010;19:36–42. [5] Bellon M, Pfeiffer W, Maurici V. Choice and control: how involved are people with epilepsy and their families in the management of their epilepsy? Results from an Australian survey in the disability sector. Epilepsy Behav 2014;37:227–32. [6] McCorry D, Marson T, Jacoby A. Understanding routine antiepileptic drug decisions: a qualitative analysis of patients' accounts of hospital consultations. Epilepsy Behav 2009;14:210–4. [7] Barry MJ, Edgman-Levitan S. Shared decision making—pinnacle of patient-centered care. N Engl J Med 2012;366:780–1. [8] National Institute for Health and Care Excellence (NICE). The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care (CG137). https://www.nice.org.uk/guidance/cg137; 2010. [Accessed 2nd October 2014]. [9] UK government, Department of Health. Equity and excellence: liberating the NHS. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/ 213823/dh_117794.pdf; 2010. [Last Accessed 2/10/2014]. [10] Elwyn G, Laitner S, Coulter A, Walker E, Watson P, Thomson R. Implementing shared decision making in the NHS. BMJ 2010;341:c5146. [11] Stiggelbout AM, Van der Weijden T, De Wit MP, Frosch D, Légaré F, Montori VM, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ 2012;344:e256. [12] Elwyn G, Dehlendorf C, Epstein RM, Marrin K, White J, Frosch DL. Shared decision making and motivational interviewing: achieving patient-centered care across the spectrum of health care problems. Ann Fam Med 2014;12:270–5. [13] Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. J Gen Intern Med 2012;27: 1361–7. [14] Mulley AG, Trimble C, Elwyn G. Stop the silent misdiagnosis: patients' preferences matter. BMJ 2012;345 [e6572-e6572]. [15] Elwyn G, Lloyd A, May C, van der Weijden T, Stiggelbout A, Edwards A, et al. Collaborative deliberation: a model for patient care. Patient Educ Couns 2014;97:158–64. [16] Shepherd HL, Barratt A, Trevena LJ, McGeechan K, Carey K, Epstein RM, et al. Three questions that patients can ask to improve the quality of information physicians give about treatment options: a cross-over trial. Patient Educ Couns 2011;84: 379–85. [17] Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014;1:CD001431. [18] Elwyn G, Lloyd A, Joseph-Williams N, Cording E, Thomson R, Durand MA, et al. Option Grids®: shared decision-making made easier. Patient Educ Couns 2013;90: 207–12. [19] Seal RP, Kynaston J, Elwyn G, Smith PE. Using an Option Grid® in shared decision making. Pract Neurol 2014;14:54–6. [20] Kim LG, Johnson TL, Marson AG, Chadwick DW, MRC MESS Study group. Prediction of risk of seizure recurrence after a single seizure and early epilepsy: further results from the MESS trial. Lancet Neurol 2006;5:317–22. [21] Prognostic index for recurrence of seizures after remission of epilepsy. Medical Research Council Antiepileptic Drug Withdrawal Study Group. BMJ 1993;306: 1374–8. [22] Patient care plans. https://www.epilepsy.org.uk/professionals/healthcare/patientcare-plan. [Last accessed 2/10/2014]. [23] Klitzman R. Improving education on doctor–patient relationships and communication: lessons from doctors who become patients. Acad Med 2006;81:447–53. [24] O'Connor AM, Bennett C, Stacey D, Barry MJ, Col NF, Eden KB, et al. Do patient decision aids meet effectiveness criteria of the international patient decision aid standards collaboration? A systematic review and meta-analysis. Med Decis Making 2007;27:554–74. [25] Joosten EA, DeFuentes-Merillas L, de Weert GH, Sensky T, van der Staak CP, de Jong CA. Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychother Psychosom 2008;77: 219–26. [26] Berg AT, Baca CB, Loddenkemper T, Vickrey BG, Dlugos D. Priorities in pediatric epilepsy research: improving children's futures today. Neurology 2013;81:1166–75. [27] Choi H, Pargeon K, Bausell R, Wong JB, Mendiratta A, Bakken S. Temporal lobe epilepsy surgery: what do patients want to know? Epilepsy Behav 2011;22:479–82.
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