July 22nd, 2015
I was not able to stay until the last day of the event so my reflections are limited to what I saw directly and through discussions in persons and twitter posts (using the hashtag #ISDMISEHC ). I will not belabor the obvious: this was a resounding success for the organizing committee – Lyndal Trevena, Kirsten McCaffery and Paul Glasziou deserve our recognition and gratitude. Their colleagues – always diligent, helpful, and friendly – kept everything going smoothly. It is not an exaggeration that the crowd not only learned, but talked, laughed, hugged, argued, and enjoyed like only a functional family would.
That two organizations got together in Sydney was not evident. The program did not force a distinction, but I have to say that I saw much less of ISEHC than of ISDM if I had to draw one. The choice was to show what Thomas Agoritsas portrayed as a yin-yang of EBM and SDM. When EBM was center-stage it was emphasizing knowledge translation and training in the capable hands of Sharon Straus and France Legare respectively. And the synthesis either took a technological spin in the hands of the Magic app (the Norwegian-Swiss-North American collaboration featuring the brilliant Anja Fog Heen's promising work on the inclusion of practical considerations in SDM tools) or a patient-centered one in the multiple presentations featuring coaching and education to facilitate patient involvement in decision making or a series of efforts directed at the clinical encounter.
I was proud of the KER UNIT showing at the meeting: ethics, health policy, health care research, and innovation were all areas in which our colleagues took central roles. I would like to highlight our oral presentations, poster presentations, workshop on SDM implementation, and our inaugural keynote. This was Ian Hargraves first ISDM meeting and it became clear how lucky we are to have someone who understands the practices necessary to achieve patient-centered care as well as a series of philosophical underpinnings necessary for this very human task. It was also a grand slam for Kasey Boehmer whose clever, elegant, and profoundly human presentations focused on capacity assessment and elicitation using the ICAN tool captured the imagination of participants. Juan Pablo Brito did triple function: on the EBM side as the audience engaged in problem-solving the issue of overdiagnosis nicely framed by the local Alex Barratt; on the SDM side he presented his work with an encounter decision aid for Graves Disease; and on the international side, he connected with colleagues from Argentina, Chile, Peru, and Colombia to jumpstart a Latin-American SDM initiative that resists getting going. Annie LeBlanc joined them to complete our participation with a workshop on how to implement SDM in practice.
It was particularly tough for me to leave early. Emotionally, because this is THE meeting in which I get to see and enjoy family and friends doing what they love to do. Also, because I did not get to spend enough time with people I would have loved to spend more time. And because I did connect more deeply with some with whom I had one of those conversations you wish never end. Intellectually, it was hard for me to prepare the keynote address. It was a new talk and I respect this group too much to not try to offer them my best. Ian, Kasey, Annie, and Jon Tilburt (once a KER UNIT pig, always a KER UNIT pig) can testify of my angst. As I finished and reached for a glass of water, my hands were shaking, my mouth dry, and my heart racing. I was feeling exhausted and unusually emotional. During the Q&A, I recognized a possible explanation: my message had connected with what brought us all to Sydney. We were all there because of our commitment to patients. For a minute, the discussion was not primarily about money, value, cost containment, and austerity. As one of the presenters asked for a simple message to take home; the choice was clear, but not simple: we need a health care that is careful and kind.
We are turning the ISDM 2013 website off. The 2015 ISDM website will live on as a testimony of this year’s successful joint meeting, until the next time the SDM community (with ISEHC? I do not know, but I wish for this synthesis to continue) gets together in 2017. In the meantime, I come home recharged and hopeful: brilliant people are trying to change the world for the right reasons for those who suffer. May the force be with them. Until the next time.
July 17th, 2015
Does it make sense to hold a shared decision-making conference and an evidence-based healthcare conference together? Reflections before Sydney 2015
From July 19-22, 2015, the International Society for Evidence-based Healthcare (ISEHC) and the International Shared Decision Making Conference will meet together, for the first time, in Sydney.
Our groups have been hatching this moment for years. In addition to the reduced carbon footprint and other efficiencies, there is a conceptual case for this. This was first elaborated in Peru ISDM 2013 by Gordon Guyatt who coined ‘evidence-based medicine’ and is the president of ISEHC. Later, a paper in JAMA with my colleagues in Australia further the connection between EBM and SDM. Here are my reflections before traveling to Sydney.
A paradigm shift in medicine that extended to the rest of health care started 25 years ago. Evidence-based healthcare (EBHC) promoted a systematic appreciation of the body of knowledge about the options of care and their relative merits. It sought to explicitly incorporate this knowledge in the design of clinical care policies and in the care of individual patients. EBHC recognized that consideration of the research evidence alone is necessary but not sufficient to formulate a sensible recommendation. Patient preferences and context – personal, social, and clinical – must be explicitly considered to increase the chance that we will do more good than harm. Without this context, we have evidence tyranny, a careless one-size-fits-all nightmare.
In parallel, work has taken place to center care around patients, through advocacy, collective action, and science. Nothing about me without me. This work has led, at best, to favor patient empowerment, activation, and self-care; at worse, it has casted patients as customers and consumers. When they bring the patient into sharper focus, these approaches, however, often leave implicit how to use the evidence to formulate care plans that address the patient situation.
More enlightened approaches have sought to engage patients in co-creating decisions. Patients and clinicians need options based on science, and they need to put the pertinent evidence to work to attend to this patient’s situation. Overcoming the allure of evidence tyranny, we must embrace the messy work of making use of the evidence to care for patients, and to partner with them to co-create treatments that address their particular situations. It is work that patients and clinicians undertake together.
The work of evidence-based healthcare and shared decision making supports patients and clinicians in jointly finding an adequate answer, in this time and place, to a driving question of health care: what is best for me and my family? In responding, they configure a powerful union of forces for patient-centered care.
I look forward to experiencing this union of forces down under!
June 22nd, 2015
Work in shared decision making tends to focus on the clinical encounter. Some research has focused on how to prepare patients and clinicians for a decision making encounter. Other work has focused on how to facilitate conversations during an encounter or measuring the extent of shared decision making that occurs between patient and provider. This focus on the clinical encounter likely has multiple origins. First, much of the research in shared decision making has focused on decisions that are relatively discrete and time-bound, such as surgeries or screening tests. Second, the clinical encounter is easy to access and assess. It occurs at a specific time and place. It involves a set group of individuals. It has a beginning and an end.
Particularly in the setting of chronic disease, a singular focus on the clinical encounter limits our understanding of decision-making processes. In fact, in chronic conditions decision making is often thought of as being more of a process than an event. However, little research has investigated the details of this process. We sought to more fully explore this process through a longitudinal qualitative study of parents of children with chronic conditions.1
In this study we followed parents (n=29 from 21 families) for 6-10 weeks following an index clinical encounter at which they discussed a treatment change for their child’s chronic condition. Parents were interviewed multiple times and asked to describe their decision process, including aspects of the process that occurred before the index encounter. For all participants, the decision evolved over time, neither starting nor ending at the clinical encounter, and involved conversations with family members and/or friends who had not been present at the clinical encounter. Some parents described a slow, steady progression towards a decision while others either felt the decision occurred in a step-wise process or that some event led to an abrupt decision. Regardless of how the decision evolved, parents felt their role in the decision-making process did not change over time. Furthermore, after the decision was officially made parents continued to think about it and consider whether they had made the right decision.
The concerns and expectations parents had about treatment changed over the course time. Often after deciding to start a new treatment the expectations shifted from focusing on symptom improvement to focusing on side-effect avoidance. Similarly, parents’ emotions often fluctuated between worry and hope. Some experienced relief from worry when their child did well on the new treatment while others shifted from worrying about their child’s symptoms to worrying about potential side effects.
By prospectively following parents, we demonstrated that, indeed, decision making in chronic disease is a process not an event. It is a process that follows distinct patterns of evolution, includes numerous people and involves shifting expectations and emotions. How then do we best support and foster shared decision making in this environment? We need tools that capitalize on the fact that decision-making occurs over time. Tools that help patients and families converse with clinicians and then help those patients and families converse with other people in their life. We need to acknowledge that what happens in the clinical encounter is likely only a small part of the decision-making process, an important part but not the only part. Finally, in the setting of chronic conditions we need to develop programs, tools and interventions that capitalize on chronicity. Few people impacted by chronic conditions will make only one treatment decision during the course of their illness; rather chronic conditions involve a series of decisions. By taking advantage of this repetition we may be able to help families become more skilled, engaged decision makers through learning and practicing skills at each decision making opportunity.
Submitted by Ellen A. Lipstein MD, MPH
Ellen A. Lipstein MD, MPH, is a general pediatrician and health services researcher at Cincinnati Children’s. Dr. Lipstein’s research is focused on family-centered medical decision making. She is particularly interested in understanding and improving the ways parents and patients with chronic conditions collaborate with healthcare providers to make treatment decisions. Her current program of funded research uses both qualitative and quantitative methods to explore decisions about high-risk treatments, in which both the potential benefits and risks are significant. Additionally, Dr. Lipstein is a collaborator on several studies which aim to develop diverse methods for engaging patients and parents in decision making.
June 15th, 2015
We are now recognized as a tool to improve diabetes treatments by the National Diabetes Education Program (NDEP). http://ndep.nih.gov/hcp-businesses-and-schools/HealthCareProfessionals/medication-adherence/resources/health-care-teams/
As of today in their website of resources for health professionals, they include a link to our Diabetes Medication Choice cards in PDF and interactive versions into the background information including a random maestro showing their efficacy.
It is great and we are grateful to be recognized by a national program and we hope that this will increase the use of these tools that promote patient-centered diabetes care.
June 1st, 2015
By Heidi McLeod
Recent policy legislation is replete with references to shared decision making (SDM) as a way of improving the quality of care in clinical encounters (PPACA 2010). Even though these are unfunded policy exhortations, researchers are encouraged to pursue shared decision making, a process where clinicians share evidence based options with patients while respecting their needs and preferences, as an ethically viable form of healthcare delivery (Elwyn et al. 2012). In discussing how shared decision making can contribute to reducing the costs of healthcare, there has been a call to focus on patient preferences (Mulley, Trimble and Elwyn 2012). To date however, the research around shared decision making has focused more on risk communication and the process of information sharing than on the more holistic aspects of shared decision making; notably, the concept of respect.
Respect is defined as “recognition of the unconditional value of patients as persons” (Beach et al. 2007) and is as important to patients as information sharing and being involved in decision making. Indeed, both being treated with respect and decision making has independent associations with adherence, satisfaction and preventive care (Beach et al. 2005). Clinicians who are perceived as respectful to patients are shown to provide more information and express more positive affect in these visits (Beach et al. 2006). Therefore, one could postulate that without having a foundation of respect, a concept that is central to shared decision making, the rest of the process may falter. This may explain that despite decades of research, hundreds of trials, thousands of papers and policy initiatives, shared decision making has failed to take root and be implemented in everyday practice. By continuing to ignore the concept of respect in shared decision making, we are disrespecting respect.
The disrespect for respect is further evident in how we measure shared decision making. The gold standard for measuring whether shared decision making has actually occurred within an encounter is the OPTION scale (Elwyn et al. 2003). The OPTION scale assesses to what extent the clinician has engaged in shared decision making with patients and is based on a 12-point scale which determines the efficacy of the decision-making process. OPTION as well as other scales to measure shared decision making (e.g. DEEP-SDM) are not designed to measure respect (although some items may reflect respectful practices), thus it is clear that respect is not recognized as a fundamental or at least measurable construct of shared decision making. As such, we lack the necessary tools to answer important theoretical and practical questions on the importance of respect in the shared decision making process. Developing a measure of respect could further our understanding of shared decision making as a theoretical construct. This will have practical consequences as a better understanding of respect may help researchers develop interventions to promote and clinicians to practice respect with their patients.
Developing a measure of respect has its own challenges, especially as the concept has not been clearly described by patients and clinicians. Most studies that look at respect use single item survey questions that assume the definition of respect is sufficiently intuitive to respondents. How respect is operationalized as a measure may also be problematic. While we are grappling with these issues in developing a measure of respect, we can look towards research in the healthcare communication literature as a guide on how respect may impact outcomes. Patient-centered communication can influence how satisfied patients are with their clinicians and the encounter itself and can affect adherence (Finset 2014). More psychosocial (non-biomedical) language is also associated with higher patient satisfaction (Roter et al. 1997). This is an area which can potentially help us to understand the effectiveness of SDM, particularly if we can develop a measure of respect based on verbal and non-verbal cues in the encounter. If we think about measuring the complexity of SDM in a broader framework, degrees of shared decision making bounded by respectful communication may become evident. As recently described, measures might not tell us only about the performance of a process, they might actually “drive the performance” and as such, “the right measure can be transformative” (Collins 2014).
We have been discussing shared decision making at a research and policy level for a long time. Yet there has been a disconnect between research and practice. By being able to measure respect for patients and their needs and preferences, the emergent conversation around treatment options might be far more shared than the present focus on risk communication suggests. If we begin to pay more attention to other aspects of shared decision making, and consider ways of measuring such concepts as respect, we may facilitate shared decision making’s translation into practice and improve the quality of the clinical encounter for patients and clinicians alike.
Michael Gionfriddo, Pharm.D and PhD candidate in the KER Unit at Mayo Clinic, contributed to this blog by editing various drafts.
Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersley, P., Cording, E., Tomson, D., Dodd, C., Rollnick, S., Edwards, A. and Barry, A. (2012) “Shared Decision Making: A Model for Clinical Practice”, Journal of General Internal Medicine 27(10):1361-1367
Mulley, A.G., Trimble, C. and Elwyn, G. (2012) “Stop the silent misdiagnosis: patients’ preferences matter” BMJ 2012:345
Beach, M.C., Duggan, P.S., Cassel, C.K., and Geller, G. (2007) “What Does ‘Respect’ Mean? Exploring the Moral Pbligation of Health Professionals to Respect Patients”, Journal of General Internal Medicine 22 (2007):692-695
Beach, M.C., Sugarman, J., Johnson, R.L, Arbelaez, J.J., Duggan, P.S. and Cooper, L.A. (2005) “Do Patients Treated With Dignity Report Higher Satisfaction, Adherence and Receipt of Preventive Care?”, Annals of Family Medicine 3(4): 331-338
Beach, M.C., Roter, D.L., Wang, N-Y., Duggan, P.S. and Cooper, L.S. (2006) “Are Physicians’ Attitudes of Respect Accurately Perceived by Patients and Associated with more Positive Communication Behaviors?” Patient Education and Counseling 62 (2006): 347-354
Elwyn, G., Edwards, A., Wensing, M., Hood, K., Atwell, C. and Grol, R. (2003) “Shared Decision Making: developing the OPTION scale for measuring patient involvement” Quality Safety Health Care 12 (2003): 93-99
Clayman, M.L., Makhoul, G. Harper M.M., Koby, D.G., and Williams, A.R. (2012) “Development of a shared decision making coding system for analysis of patient-healthcare provider encounters”, Patient Education and Counseling 88 (2012): 367-372
Finset, A. (2014) “50 Years of Research on the Effect of Physician Communication Behavior on Health Outcomes”, Patient Education and Counseling 96 (2014) 1-2.
Roter, D.L, Stewart, M. Putnam, S.M., Lipkin, M., Stiles, W. and Inui, T.S. (1997) “Communication Patterns of Primary Care Physicians”, JAMA 277 (1997): 350-356
Collins, A. (2014) “Measuring What Really Matters. Towards a coherent measurement system to support person-centered care” Thought Paper. The Health Foundation.
May 18th, 2015
By Khalid Benkhadra, M.D.
Recently, many studies have investigated the role patients want to play in the decision making process around how to manage their health. This is of great importance, because while clinicians are experts in what works for a certain condition, patients are experts at what works for them. Shared decision making (SDM) is a mode of decision making where the expertise of both clinicians are respected and integrated into decision making through a process of collaborative deliberation.. Prior studies examining the role patients prefer when deciding on cancer treatment found that patients prefer to play a role in decisions, but that role varied from patient to patient1-3. To determine whether or not patient’s preference for SDM modified quality of care or physician communication Kehl et al4 conducted a survey. This survey was conducted among participants in the cancer care outcomes research and surveillance consortium (CanCORS). Patients in this consortium were questioned about what their preferred role was when making cancer related treatment decisions and what actual role did they have in the decision making process around treatment for their cancer. They also reported on their perception of their overall quality of care.
Two thirds (67.8%) of patients reported that the overall quality of care they received was excellent and over half (55.8%) rated their physician’s communication highly. When they examined how these ratings correlated with the roles patients would prefer to play in the decision making process, they found that compared to patients who preferred share decisions patients who preferred that their physician control the decision making were less likely to give top ratings to their physician. These patients also gave lower ratings of physician communication. The reasons behind these results are not clear and need further investigation.
Percentage of patients reporting excellent quality of care and high communication were both poorly calculated. For quality of care, results were reported by decisions; individual patient rating was not reported. For rating communication, analysis was restricted to patients who answered 3 out of 5 questions and answers were averaged.
In general, outcomes were very subjective and it was difficult to assess how strong the relationship between the patients answers and the actual encounter; there is a possibility a patient might rank an encounter low if he is not happy about a reason not related to the actual encounter. Besides, no information was reported about how educated tha patients were about SDM (and if yes, how much they were). Having a third party watching the encounter and assessing the communication would be a good addition as we can compare it with the patients response and see if both match (rather than taking only the patient’s response)
These findings in general suggest that providing information to patients with cancer and engaging them in decision making is valuable, even for patients who express a preference for a physician controlled decision making process.
April 30th, 2015
By Victor M Montori, Ian Hargraves, Annie LeBlanc
Policymakers fashionably prescribe shared decision making for patients who face fateful decisions. These patients have two or more medically reasonable courses of action that differ in important aspects. The extent to which these aspects differ in ways that matter to each individual patient justifies patient involvement in the decision-making process. Similarly, the extent to which clinicians can accurately predict the values and preferences of informed patients reduces the value of shared decision making. Only in circumstances where the distribution of patient preferences is very narrow can clinicians correctly deduct patient preferences (e.g., analgesics vs. no intervention for moderate to severe pain). This is often the case when the pros and cons of alternative courses of action are well known, their likelihood estimates are based on highly reliable research evidence, and difference between the benefits and the potential harms and inconveniences is large and clear. In such situations the distribution of patient preferences will be narrow enough that most clinicians can assume correctly what most patients will want. At the extreme, these decisions will seem purely technical, where the right course of action is apparent to those with a good understanding of the situation. This would include professionals with pertinent training. In situations that cannot be resolved by the application of technical knowledge, patients, when informed, will exhibit a range of preferences. It seems appropriate then that patients and clinicians partner to share information, deliberate, and arrive at a decision together. We call this process shared decision making.
Proponents of shared decision making assume that most clinicians and patients, when given the tools, time, and supportive setting necessary, will be able to implement shared decision making. Reality seems to behave differently: surveys suggest that patients are not universally inclined toward shared decision making, clinicians are often portrayed as barriers to this process, and environments have electronic medical records, phone calls, time pressures, competing demands, and noise that conspire to interfere with shared decision making. What’s going on if patients and clinicians aren’t adhering to the shared decision making prescribed on their behalf?
Our group, the KER UNIT, characterizes shared decision making as a conversation – an activity in which patients and clinicians turn with one another (the etymology of conversation—versare turn; con with). In conversation, the options with their attributes or issues are in dynamic interaction as the patient and clinician consider them and experimentally try them on. This highly interactive dynamic requires the active engagement and involvement of the patient and clinician. This turning-with of patients and clinician is the dance of shared decision making.
The clinician is used to contemplating the situations of patients and making tough decisions routinely; but for this patient, at this time, the task is anything but routine. Thus, it is natural to delegate to the more experienced and emotionally detached of the two the task of organizing the decision-making conversation. The clinician, leading the dance, will identify that a decision needs to be made, the relevant options and their relative desirable and undesirable features, and will invite the patient to consider these options and features. But, to what extent are patients willing and able to engage in deliberation?
We propose that the adequate way of answering this question is through empathy. In suggesting empathy we do not mean that clinicians should empathically divine the right decision for the patient; quite the opposite. We are suggesting that the co-creation of decision also involves the co-creation of the patient-clinician relationship and the conversational environment in which each decision is made. Empathy directs attention to the clinician’s active role in finding the right relationship and stance to join this patient at this time in decision making. Clinicians are trained and are expected to exhibit empathy when interviewing and examining patients, responding to patient concerns, and delivering bad news. The role of empathy in supporting decision making has not been fully discussed, to our knowledge. In this case, empathy requires attention to the situation of the patient and to the cues, verbal and nonverbal, the patient offers as the clinician invites the patient into the deliberative process. Some patients may be able to partner fully and co-create the decision; others may engage with the information, but delegate the rest of the tasks of deliberation and decision taking to the clinician. This is the expression of a preference that is being constructed on the spot (it follows that this preference cannot be adequately assessed with a survey tool, before the encounter and therefore out of context). The appropriate stance in the conversation is available to the clinician in subtle signs that the clinician can pick up through empathic attention to the patient. Focus on who the patient and clinician are, and can be, for each other in this conversation allows us to respect that the same patient may be willing to co-create one decision while preferring a lesser role for the next. The challenge for the clinician is to correctly respond, in real time, to these emerging preferences.
Shared decision-making tools produced for use during the clinical encounter need to account for this clinical task and be designed to support empathic decision making. When encounter tools offer too much information or script a step-by-step decision process, they may inadvertently limit the ability of the clinician to empathically guide the process. When tools are used in preparation for the visit, clinicians may assume that completion of the tool and associated worksheets signals that patients are fully engaged and ready to make decisions. That a tool should enable and support empathic decision making is not currently a requirement for their design of decision aids, or a metric for their impact.
In summary, shared decision making is one of an infinite set of ways in which patients and clinicians can engage in conversation about fateful decisions without a technically correct answer. To create the environment in which patients and clinicians co-create decisions, clinicians must actively invite and support patients in the process, empathically “reading” the patient to match their evolving preference for participation. Tools to support this process need to be designed to facilitate and not interfere with empathic decision making, and this may form the basis for new measures of decisional quality.
Thus, we are not just for shared decision making. We are for empathic decision making.
April 16th, 2015
From Gaby Loria, medical market researcher for Software Advice
Physicians hoping to boost patient engagement in their practices can take heart in the findings of our recent survey report on shared decision making. In our report, 386 U.S. patients shared their thoughts on shared decision making (SDM), including how SDM can improve their experience at point of care and beyond.
Based on the survey, 68% of patient respondents reported that they wanted to make collaborative decisions with their healthcare providers. It is important to note not all medical decisions can or should be made jointly. However, in appropriate cases, SDM is emerging as an answer to patient demand for increased involvement in discussing treatment options.
As part of our survey, respondents watched a short video demonstration featuring Dr. Victor Montori of the Mayo Clinic’s KER Unit using his SDM decision aid cards with a patient. After viewing this video, 40% of the respondents said they have participated in a similar appointment with their provider, with 21% doing so in the past year. It’s encouraging to see such a significant percentage of patients experiencing SDM. However, these results also represent a call to action for advocates who would like to see the vast majority of practices implementing this collaborative patient-physician communication strategy.
Among respondents who had never participated in SDM with their provider, 47% said they would be “extremely” or “very likely” to switch to a provider who actively engages patients in decision making. These findings again reflect a substantial patient interest in the SDM treatment model. With the recent increase in healthcare legislation aimed at supporting and incentivizing value-based care measures like SDM, soon it may not be necessary for patients to leave their providers to get the care they want.
Since one of the primary objectives of SDM (and patient-centered care in general) is to help the patient feel more involved in treatment decisions, it makes sense that a combined 87% of the patients surveyed report that using an SDM model “significantly” or “somewhat” improves (or would improve) how involved they feel with their medical care.
When the patients were asked what—if anything—would discourage their participation in SDM appointments, 46% cited no concerns. This finding reflects a great deal of patient confidence in SDM. However, it is important to consider that 20% of respondents tell us they are concerned because they distrust their own decision making abilities. Dr. Montori points out that this lack of confidence is mostly due to patients having little or no involvement in past decision making sessions with healthcare providers. As more patients experience SDM, more should come to trust their own abilities to participate.
As SDM becomes more common in patient-physician interactions, priority should be placed not only on encouraging further adoption, but also on ensuring that physicians have the right tools for effective implementation. SDM decision aids, such as demonstration cards, are increasingly available for integration into digital patient charting systems like these, which help facilitate adoption of SDM into standard workflow processes. Taken as a whole, the report’s findings point to a bright future for shared decision-making, as this model continues to help improve the quality of treatment discussions and connections between patients and physicians.
April 2nd, 2015
COPD is the third most common cause of death in the USA (1). Fifteen million Americans report that they have been diagnosed with COPD (2), but the actual number is likely to be higher, as more than 50% of adults with low pulmonary function are not aware that they have COPD (3).The national medical costs for COPD were $32.1 billion dollars annually in 2010, and are expected to rise to $49 billion dollars annually by 2020 (4).
But there is not only the impact of COPD on health care services and medical cost; there is a significant burden associated with COPD and COPD treatment that patients have to bear. When COPD patients were asked in a study to define their condition in their own words, 29% percent defined their condition with the sensations of burden, limitation, or disability (5).
Consider the case Mrs. S. who is a 70-year-old cachectic woman who has had 3 hospital admissions for acute exacerbations of COPD in the past year and a total of 12 hospital admissions in the last 5 years. Her COPD is severe based on lung function testing with an FEV1 of 25% predicted and she has chronic severe hypoxaemia with a Pa02< 55 mmHg (<7.3kPa). She gets breathless when she walks more than 30 meters (98 feet). She has been a smoker for 45 years and, unfortunately, she continues to smoke, despite successfully giving up smoking for 6 months- supported by nicotine replacement therapy- a couple of years ago. Her medical specialists and her primary care doctor keep nagging her about her smoking. She is on home oxygen therapy (prescribed to her at the time when she stopped smoking), and recently experienced an anxiety attack when her oxygen concentrator would not work during a power outage. She has a history of congestive cardiac failure, arterial hypertension, rheumatoid arthritis, chronic back pain caused by several vertebral fractures of the thoracic and lumbar spine secondary to long term systemic corticosteroid therapy, hypothyroidism, anxiety and depression.
In the past, she has often not shown up for her specialist appointments because she does not have anybody to drive her to the appointments; she is too unwell to come by public transport; and she cannot afford a taxi. Her pulmonary specialist had referred her to the outpatient pulmonary rehabilitation program at the hospital, but she dropped out after the first session because of transportation problems. She is not taking the tablets she has been prescribed other than pain medication and thyroxin tablets, because she does not feel that they do a lot for her. She finds it difficult to handle the metered dose inhalers with her arthritic fingers and thus often skips the inhalation treatment. She lives on her own; her two daughters live a few hours’ drive away, and she only sees them a few times every year. She does not have any close friends. She feels that most people around her are blaming her for her COPD because she smokes.
It is easy to see that COPD reduces Mrs. S. quality of life significantly, and it apparent that she is overwhelmed by managing the treatment of her disease. What could shared decision making (SDM) and minimally disruptive medicine (MDM) offer to somebody like Mrs. S.? The following scenario could unfold when SDM and MDM are integrated in Mrs. S.’ clinical care:
During the next clinical encounter her pulmonologist uses a decision aid that has been designed to facilitate collaborative deliberation of treatment options in COPD (6). Mrs. S. is invited to choose which outcome goal she would like to discuss first given a choice of ‘improving symptoms of COPD (shortness of breath, cough)’, ‘reducing flare-ups of COPD’, ‘increasing life expectancy’, ‘improving function in everyday life’. She chooses ‘improving function in everyday life’ and learns how important pulmonary rehabilitation is to maintain and improve her function in everyday life. Her pulmonologist shows her a graphic display of the functional improvement that can be achieved with pulmonary rehabilitation in comparison with other measures, such as inhalation therapy. Mrs. S. is surprised to see that pulmonary rehabilitation can do more for her functioning in everyday life than inhalers, and she now wants to give this another try. Because problems with transportation to the clinic have been the major barrier to attending the pulmonary rehabilitation program at the clinic before, the pulmonologist helps her to find a pulmonary rehabilitation program closer to her home that also provides complimentary bus pick up (facilitating social interactions with other COPD patients on the bus- an additional benefit!).
The decision aid further points out that anxiety and depression negatively impact on function in everyday life. Together with her pulmonologist, Mrs. S. decides that she wants to address her anxiety and depression; they agree that he should be treated with an antidepressant. As smoking cessation has also been listed as important for functional improvement, the pulmonologist and patient decide that they will discuss smoking cessation aids during the next consultation.
To address the fact that Mrs. S. feels overwhelmed with all her medications for different diseases, her primary-care doctor and her pulmonologist use an electronic decision support tool that addresses multimorbidity in elderly patients integrating principles of MDM. This decision support tool takes into account Mrs. S.’ individual patient profile and tailors treatment recommendations to her circumstances and preferences. The electronic decision support tool provides information about the types of outcomes achieved with different treatments (e.g. ‘improving quality of life’, ‘increasing life expectancy’) and the impact in reduction of risk across specific scenarios. The tool assist the clinician and Mrs. S. in ranking these treatments based on benefit, harms, and, importantly, burden. After she and her primary-care doctor have discussed the information from the electronic decision tool, they can now understand why some medications are more important for her than others. Perhaps as importantly, they both gain understanding as to the reasons the patient has to value certain aspects of her care.
The electronic decision support tool suggests antidepressant therapy with mirtazapine for her because this medication has also been shown to stimulate appetite and promote weight gain, which would be a desired effect for her.
Regarding inhaler therapy, she decides that she does not want to use inhaled corticosteroids because of the increased risk of pneumonia and her history of previous COPD flare-ups triggered by pneumonia, but she is now motivated to use a combination inhaler with a long-acting bronchodilator and a long-acting muscarinic antagonist because the potential improvement in dyspnoea she can achieve with this treatment. She determines with her pulmonologist that she will stop the inhaler treatment if she does not notice any improvement with her breathing within 3 months. They work with a pharmacist to identify the type of inhaler device needed to account for her problem with handling devices due to arthritis.
Because transport to the clinic poses a significant barrier to attending specialist appointments, her pulmonologist offers her to do a teleconsultation next time.
This futuristic tale has illustrated some of the potential benefits of SDM and MDM in COPD patients. I am particularly focused on helping realize this vision of integrating MDM and SDM into the routine care of patients with COPD.
Submitted by Claudia Dobler, M.D.
South Western Sydney Clinical School, University of New South Wales, Australia
March 19th, 2015
By Per Olav Vandvik, Anja Fog Heen, Thomas Agoritsas
Some problems with current guidelines
To succeed in evidence-based diagnosis and treatment at the point of care, health care personnel need access to the best current research evidence, for example through trustworthy clinical practice guidelines. Most guidelines suffer from methodological weaknesses (e.g., identification and assessment of research evidence, development of recommendations), suboptimal presentation formats and infrequent updating of content. New standards for trustworthy guidelines and advanced systems for evidence assessment and creating recommendations provide better opportunities to succeed in development of guidelines but also illuminate the demand for methodological competence, clinical expertise and time. Equally important as providing trustworthy content in guidelines is to achieve effective dissemination at the point of care, to allow shared decision-making with patients and to perform timely updates of content.
Solutions through MAGIC
Our insights on current limitations with guidelines has resulted in an urge to provide solutions to current problems with creating, disseminating and updating guidelines. We have operationalized the solutions through what we call the MAking GRADE the Irresistible Choice (MAGIC) research and innovation program and non-profit initiative (1). A key innovation in the MAGIC program is a web-based authoring- and publication-platform (MAGICapp) that allows parallel development and publication of guidelines on the web, in tablets and smartphones, as well as integration of guidelines into electronic health records.
The guideline content is presented to end-users in what we call “top layer formats” that defines the minimum amount of information clinicians need to apply recommendations in practice. This multilayered presentation format has been developed through extensive research in the MAGIC and the DECIDE project (2).
Importantly, the MAGICapp includes structured content of all guideline content in a database based on the PICO questions that underlie all recommendations. Structured guideline content facilitates not only the development and publication of the guidelines but also facilitates dynamic updates of the guidelines on a recommendation per recommendation basis once new evidence emerges.
Decision aids that really promote shared decision-making
Most recommendations in trustworthy guidelines are weak. Weak recommendations reflect a fine balance between benefits and harms of treatment alternatives and implies that clinicians should apply the recommendations in a balanced manner in encounters with individual patients. In such situations shared decision-making - through use of decision aids available through the MAGICapp - may come into play (3). The clinician and patient can together deliberate on treatment options through the use of a decision aid on a tablet computer, designed to create conversations. The decision aid visualizes anticipated benefits, harms and practical issues of the possible treatment alternatives. Our decision aids are based on pioneering work by - and fruitful collaboration with - Dr. Victor Montori and colleagues the Mayo clinic.
What next for MAGIC?
The MAGICapp is available for use for organizations charged with development of guidelines. We are now expanding our scope to include the development of multilayered evidence summaries and decision aids also in the context of trustworthy systematic reviews. We welcome you to test MAGICapp and provide feedback to further improve functionality of the authoring process and publication outputs, to the benefit of clinicians and patients at the point of care.