HOW TO DO IT
Using an Option Grid in shared decision making Robert P Seal,1 Jeremy Kynaston,2 Glyn Elwyn,3 Philip E M Smith4 1
Frenchay Hospital, Bristol, UK Cardiff University, Cardiff, UK 3 The Dartmouth Centre for Healthcare Delivery Science, Dartmouth, USA 4 University Hospital of Wales, Cardiff, UK 2
Correspondence to Dr Robert Seal, Frenchay Hospital, Frenchay Park Road, Bristol BS16 1LE, UK; [email protected] Published Online First 22 October 2013
INTRODUCTION Neurologists make treatment decisions every day; there is a strong ethical case (patient autonomy) for making these decisions jointly with patients.1 2 Patients must clearly be closely involved in high-stakes decisions, such as starting chemotherapy and/or radiotherapy for malignant glioma. But there are many lower-stakes decisions where shared decision making can optimise and improve outcomes. Furthermore, there is strong political pressure for efficiency, ensuring the right patients receive the right treatment.3 Thus, patients, policy makers and clinicians each support the principle of shared decision making.1–3 Joint decision making also makes sense from a health and well-being point of view; we feel relatively better when we have more control over events in our lives. DECISION SUPPORT TOOLS Although good shared decision making is hard to define and to measure, how we share a decision is very important.2 In particular, ‘patient decision support tools’ can positively impact the quality of treatment decisions. A Cochrane review of such tools (2011 update including 86 randomised controlled trials) showed that increased patient knowledge and improved patient perception of risk helped to ensure that decisions were ‘more congruent’ with patient preferences.4 This research, coupled with the broad public and professional support for shared decision making, suggests clinicians should reconsider how they reach decisions with their patients, and whether they could do better. Option Grids provide a practical tool to support this.
To cite: Seal RP, Kynaston J, Elwyn G, et al. Pract Neurol 2014;14:54–56.
54
OPTION GRIDS An Option Grid is a single-sided A4-paged tabulated summary of options, based upon an (often extensive) evidence document, and written to a reading age of about 12 years. The rows comprise frequently asked questions (six-to-eight to
fit to paper size); the columns give the available options (generally two-to-three). The underpinning evidence document is drawn from the available evidence, agreed guidelines and expert opinion: the document is further refined through consultation with local healthcare workers and patients. The completed document is published on the Option Grid website http://www.optiongrid.org, updated annually. USING THE GRID IN CLINIC We suggest printing out the Grid from the website (to ensure that you use the latest version) and then to follow a sixstage approach (box 1).
Box 1 Six-step approach to using an Option Grid5 1. Describe: inform the patient that the goal of using the grid is to initiate a conversation about options, that it is organised as a table to enable comparison, and that it uses questions that other patients have found useful. 2. Check: ask patients if they wish to read it themselves or whether they prefer the comparisons to be read aloud. 3. Handover: give the grid to the patient and provide a pen so that they can mark their copy and jot questions if they wish. 4. Create space: if they wish to read the grid themselves, ask permission to perform other tasks during this, so they do not feel ‘observed’ as they take time to assimilate the information. 5. Ask: encourage questions and discussion. 6. Gift: tell the patients that they should take the grid with them, as an aide mémoire and an opportunity to discuss their options with others, as well as to look for more information (encourage referral to specific sources).
Seal RP, et al. Pract Neurol 2014;14:54–56. doi:10.1136/practneurol-2013-000666
HOW TO DO IT
Figure 1
Option Grid for hippocampal sclerosis in temporal lobe epilepsy, as formatted for printing.
Seal RP, et al. Pract Neurol 2014;14:54–56. doi:10.1136/practneurol-2013-000666
55
HOW TO DO IT OPTION GRIDS IN NEUROLOGY Most neurological patients would welcome support in coming to treatment decisions, for many of which there is only limited evidence and clinical equipoise. Common examples include choosing a dopa agonist or dopa supplement as first line treatment in Parkinson’s disease, electing to start disease-modifying therapy in multiple sclerosis, or choosing surgery or conservative management for disc-related lumbar root compression. Here, we specify using an Option Grid to help patients with hippocampal sclerosis to decide on epilepsy surgery. SURGERY IN TEMPORAL LOBE EPILEPSY: THE DECISION The decision to undergo brain surgery is a high-stakes decision and potentially very daunting for patients. However, surgery in selected patients with pharmacoresistant epilepsy from hippocampal sclerosis substantially improves life expectancy and quality-adjusted life expectancy, compared with medical management,6–8 with around 70% of patients seizure free after surgery.6 However, surgery may have serious complications, though stroke and death affect only 1% of patients.7 This must be weighed against a similar but cumulative risk (circa 1% per year) of sudden unexplained death in epilepsy among people with pharmacoresistant epilepsy.9 10 Despite this evidence, patients with resistant epilepsy often perceive neurosurgery as being very dangerous. In 2010, 51% of 109 people with epilepsy would not consider surgical treatment, even if it were guaranteed to stop their seizures without causing deficits.11 SURGERY IN TEMPORAL LOBE EPILEPSY: OPTION GRID This Option Grid (figure 1) gives answers to six frequently asked questions in an easy-to-read format. These questions address seizure control, adverse events and long-term outcomes. The evidence underpinning the Grid is based upon a systematic literature review together with selected national expert opinion (available at http://www.optiongrid.org). OTHER OPTION GRIDS IN NEUROLOGY We already use an Option Grid for women taking sodium valproate who are contemplating pregnancy (http://www.optiongrid.org). There is potential to devise other grids in any situation where our current advice to patients is based upon an insecure or imprecise evidence base (ie, most of clinical neurology), starting with those areas of greatest importance and greatest uncertainty. CONCLUSION Option Grids help patients to decide—with their clinicians—their best treatment option. The six-step approach hands power to the patient and
56
demonstrates respect for the patient’s views. Furthermore, an explicit statement of decision options generates wider conversations and sharing of best practice on the best approach to help to make these decisions. An explicit options document also brings standardisation to the sharing of decisions, and allows less experienced staff to share decisions with patients with confidence. A grid can complement the clinic letter copied to the patient, and in our experience does not add to consultation time. Acknowledgements The authors thank Khalid Hamandi, Liam Gray, Rhys Thomas, Ann Johnston and Vicki Myson for helping to develop the epilepsy surgery Option Grid, and those at the Cardiff Decision Laboratory for supporting this project. Contributors RPS drafted and revised the paper, and revised the draft Option Grid discussed in the paper. He is guarantor. JK drafted the Option Grid discussed in the paper and revised the draft paper. GE conceived the Option Grid idea, revised the Option Grid discussed in the paper and revised the draft paper. PEMS conceived the paper, revised the draft Option Grid discussed in the paper and revised the draft paper. Competing interests We have read and understood the BMJ Group policy on declaration of interests and declare the following interests: RPS: No conflicts of interest to declare. JK: No conflicts of interest to declare. GE: No conflicts of interest to declare. PEMS is co-editor of Practical Neurology. Provenance and peer review Commissioned, externally peer reviewed. This paper was reviewed by Mark Manford, Cambridge, UK.
REFERENCES 1 Mulley AG, Trimble C, Elwyn G. Stop the silent misdiagnosis: patients’ preferences matter. BMJ 2012;345:e6572. 2 Marshall M, Bibby J. Supporting patients to make the best decisions. BMJ 2011;342:d2117. 3 Department of Health. Equity and excellence: liberating the NHS, CM7881. London: Stationery Office, 2010. 4 Stacey D, Bennett CL, Barry MJ, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Systematic Rev 2011;(10):CD001431. 5 Elwyn G, Lloyd A, Joseph-Williams N, et al. Option Grids: shared decision making made easier. Patient Educ Couns 2013;90:207–12. 6 Choi H, Sell RL, Lenert L, et al. Epilepsy surgery for pharmacoresistant temporal lobe epilepsy: a decision analysis. JAMA 2008;300:2497–505. 7 Engel J Jr, McDermott MP, Wiebe S, et al. Early surgical therapy for drug-resistant temporal lobe epilepsy: a randomized trial. JAMA 2012;307:922–30. 8 Wiebe S, Blume WT, Girvin JP, et al. A randomized, controlled trial of surgery for temporal-lobe epilepsy. N Engl J Med 2001;345:311–18. 9 Nilsson L, Ahlbom A, Farahmand BY, et al. Mortality in a population-based cohort of epilepsy surgery patients. Epilepsia 2003;44:575–81. 10 Nashef L, Fish DR, Sander JW, et al. Incidence of sudden unexpected death in an adult outpatient cohort with epilepsy at a tertiary referral centre. J Neurol Neurosurg Psychiatry 1995;58:462–4. 11 Prus N, Grant AC. Patient beliefs about epilepsy and brain surgery in a multicultural urban population. Epilepsy Behav 2010;17:46–9.
Seal RP, et al. Pract Neurol 2014;14:54–56. doi:10.1136/practneurol-2013-000666
Using an Option Grid in shared decision making Robert P Seal,1 Jeremy Kynaston,2 Glyn Elwyn,3 Philip E M Smith4 1
Frenchay Hospital, Bristol, UK Cardiff University, Cardiff, UK 3 The Dartmouth Centre for Healthcare Delivery Science, Dartmouth, USA 4 University Hospital of Wales, Cardiff, UK 2
Correspondence to Dr Robert Seal, Frenchay Hospital, Frenchay Park Road, Bristol BS16 1LE, UK; [email protected] Published Online First 22 October 2013
INTRODUCTION Neurologists make treatment decisions every day; there is a strong ethical case (patient autonomy) for making these decisions jointly with patients.1 2 Patients must clearly be closely involved in high-stakes decisions, such as starting chemotherapy and/or radiotherapy for malignant glioma. But there are many lower-stakes decisions where shared decision making can optimise and improve outcomes. Furthermore, there is strong political pressure for efficiency, ensuring the right patients receive the right treatment.3 Thus, patients, policy makers and clinicians each support the principle of shared decision making.1–3 Joint decision making also makes sense from a health and well-being point of view; we feel relatively better when we have more control over events in our lives. DECISION SUPPORT TOOLS Although good shared decision making is hard to define and to measure, how we share a decision is very important.2 In particular, ‘patient decision support tools’ can positively impact the quality of treatment decisions. A Cochrane review of such tools (2011 update including 86 randomised controlled trials) showed that increased patient knowledge and improved patient perception of risk helped to ensure that decisions were ‘more congruent’ with patient preferences.4 This research, coupled with the broad public and professional support for shared decision making, suggests clinicians should reconsider how they reach decisions with their patients, and whether they could do better. Option Grids provide a practical tool to support this.
To cite: Seal RP, Kynaston J, Elwyn G, et al. Pract Neurol 2014;14:54–56.
54
OPTION GRIDS An Option Grid is a single-sided A4-paged tabulated summary of options, based upon an (often extensive) evidence document, and written to a reading age of about 12 years. The rows comprise frequently asked questions (six-to-eight to
fit to paper size); the columns give the available options (generally two-to-three). The underpinning evidence document is drawn from the available evidence, agreed guidelines and expert opinion: the document is further refined through consultation with local healthcare workers and patients. The completed document is published on the Option Grid website http://www.optiongrid.org, updated annually. USING THE GRID IN CLINIC We suggest printing out the Grid from the website (to ensure that you use the latest version) and then to follow a sixstage approach (box 1).
Box 1 Six-step approach to using an Option Grid5 1. Describe: inform the patient that the goal of using the grid is to initiate a conversation about options, that it is organised as a table to enable comparison, and that it uses questions that other patients have found useful. 2. Check: ask patients if they wish to read it themselves or whether they prefer the comparisons to be read aloud. 3. Handover: give the grid to the patient and provide a pen so that they can mark their copy and jot questions if they wish. 4. Create space: if they wish to read the grid themselves, ask permission to perform other tasks during this, so they do not feel ‘observed’ as they take time to assimilate the information. 5. Ask: encourage questions and discussion. 6. Gift: tell the patients that they should take the grid with them, as an aide mémoire and an opportunity to discuss their options with others, as well as to look for more information (encourage referral to specific sources).
Seal RP, et al. Pract Neurol 2014;14:54–56. doi:10.1136/practneurol-2013-000666
HOW TO DO IT
Figure 1
Option Grid for hippocampal sclerosis in temporal lobe epilepsy, as formatted for printing.
Seal RP, et al. Pract Neurol 2014;14:54–56. doi:10.1136/practneurol-2013-000666
55
HOW TO DO IT OPTION GRIDS IN NEUROLOGY Most neurological patients would welcome support in coming to treatment decisions, for many of which there is only limited evidence and clinical equipoise. Common examples include choosing a dopa agonist or dopa supplement as first line treatment in Parkinson’s disease, electing to start disease-modifying therapy in multiple sclerosis, or choosing surgery or conservative management for disc-related lumbar root compression. Here, we specify using an Option Grid to help patients with hippocampal sclerosis to decide on epilepsy surgery. SURGERY IN TEMPORAL LOBE EPILEPSY: THE DECISION The decision to undergo brain surgery is a high-stakes decision and potentially very daunting for patients. However, surgery in selected patients with pharmacoresistant epilepsy from hippocampal sclerosis substantially improves life expectancy and quality-adjusted life expectancy, compared with medical management,6–8 with around 70% of patients seizure free after surgery.6 However, surgery may have serious complications, though stroke and death affect only 1% of patients.7 This must be weighed against a similar but cumulative risk (circa 1% per year) of sudden unexplained death in epilepsy among people with pharmacoresistant epilepsy.9 10 Despite this evidence, patients with resistant epilepsy often perceive neurosurgery as being very dangerous. In 2010, 51% of 109 people with epilepsy would not consider surgical treatment, even if it were guaranteed to stop their seizures without causing deficits.11 SURGERY IN TEMPORAL LOBE EPILEPSY: OPTION GRID This Option Grid (figure 1) gives answers to six frequently asked questions in an easy-to-read format. These questions address seizure control, adverse events and long-term outcomes. The evidence underpinning the Grid is based upon a systematic literature review together with selected national expert opinion (available at http://www.optiongrid.org). OTHER OPTION GRIDS IN NEUROLOGY We already use an Option Grid for women taking sodium valproate who are contemplating pregnancy (http://www.optiongrid.org). There is potential to devise other grids in any situation where our current advice to patients is based upon an insecure or imprecise evidence base (ie, most of clinical neurology), starting with those areas of greatest importance and greatest uncertainty. CONCLUSION Option Grids help patients to decide—with their clinicians—their best treatment option. The six-step approach hands power to the patient and
56
demonstrates respect for the patient’s views. Furthermore, an explicit statement of decision options generates wider conversations and sharing of best practice on the best approach to help to make these decisions. An explicit options document also brings standardisation to the sharing of decisions, and allows less experienced staff to share decisions with patients with confidence. A grid can complement the clinic letter copied to the patient, and in our experience does not add to consultation time. Acknowledgements The authors thank Khalid Hamandi, Liam Gray, Rhys Thomas, Ann Johnston and Vicki Myson for helping to develop the epilepsy surgery Option Grid, and those at the Cardiff Decision Laboratory for supporting this project. Contributors RPS drafted and revised the paper, and revised the draft Option Grid discussed in the paper. He is guarantor. JK drafted the Option Grid discussed in the paper and revised the draft paper. GE conceived the Option Grid idea, revised the Option Grid discussed in the paper and revised the draft paper. PEMS conceived the paper, revised the draft Option Grid discussed in the paper and revised the draft paper. Competing interests We have read and understood the BMJ Group policy on declaration of interests and declare the following interests: RPS: No conflicts of interest to declare. JK: No conflicts of interest to declare. GE: No conflicts of interest to declare. PEMS is co-editor of Practical Neurology. Provenance and peer review Commissioned, externally peer reviewed. This paper was reviewed by Mark Manford, Cambridge, UK.
REFERENCES 1 Mulley AG, Trimble C, Elwyn G. Stop the silent misdiagnosis: patients’ preferences matter. BMJ 2012;345:e6572. 2 Marshall M, Bibby J. Supporting patients to make the best decisions. BMJ 2011;342:d2117. 3 Department of Health. Equity and excellence: liberating the NHS, CM7881. London: Stationery Office, 2010. 4 Stacey D, Bennett CL, Barry MJ, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Systematic Rev 2011;(10):CD001431. 5 Elwyn G, Lloyd A, Joseph-Williams N, et al. Option Grids: shared decision making made easier. Patient Educ Couns 2013;90:207–12. 6 Choi H, Sell RL, Lenert L, et al. Epilepsy surgery for pharmacoresistant temporal lobe epilepsy: a decision analysis. JAMA 2008;300:2497–505. 7 Engel J Jr, McDermott MP, Wiebe S, et al. Early surgical therapy for drug-resistant temporal lobe epilepsy: a randomized trial. JAMA 2012;307:922–30. 8 Wiebe S, Blume WT, Girvin JP, et al. A randomized, controlled trial of surgery for temporal-lobe epilepsy. N Engl J Med 2001;345:311–18. 9 Nilsson L, Ahlbom A, Farahmand BY, et al. Mortality in a population-based cohort of epilepsy surgery patients. Epilepsia 2003;44:575–81. 10 Nashef L, Fish DR, Sander JW, et al. Incidence of sudden unexpected death in an adult outpatient cohort with epilepsy at a tertiary referral centre. J Neurol Neurosurg Psychiatry 1995;58:462–4. 11 Prus N, Grant AC. Patient beliefs about epilepsy and brain surgery in a multicultural urban population. Epilepsy Behav 2010;17:46–9.
Seal RP, et al. Pract Neurol 2014;14:54–56. doi:10.1136/practneurol-2013-000666
