Shared decision making and minimally disruptive medicine for COPD patients

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.

Dobler

Submitted by Claudia Dobler, M.D.
South Western Sydney Clinical School, University of New South Wales, Australia

 References

  1. Centers for Disease Control and Prevention. National Center for Health Statistics. National Vital Statistics Report. Deaths: Final Data for 2010. May 2013; 61(04).
  2. Centers for Disease Control and Prevention. Chronic obstructive pulmonary disease among adults—United States, 2011. MMWR. 2012;61(46):938-943.
  3. Mannino DM, Gagnon RC, Petty TL, Lydick E. Obstructive lung disease and low lung function in adults in the United States: data from the National Health and Nutrition Examination Survey, 1988-1994. Archives of internal medicine 2000; 160: 1683-1689.
  4. Ford ES, Murphy LB, Khavjou O, Giles WH, Holt JB, Croft JB. Total and State-Specific Medical and Absenteeism Costs of COPD Among Adults Aged >/= 18 Years in the United States for 2010 and Projections Through 2020. Chest 2015; 147: 31-45.
  5. Partridge MR, Dal Negro RW, Olivieri D. Understanding patients with asthma and COPD: insights from a European study. Primary care respiratory journal : journal of the General Practice Airways Group 2011; 20: 315-323, 317 p following 323.
  6. Agoritsas T, Heen AF, Brandt L, Alonso-Coello P, Kristiansen A, Akl EA, Neumann I, Tikkinen KA, Weijden T, Elwyn G, Montori VM, Guyatt GH, Vandvik PO. Decision aids that really promote shared decision making: the pace quickens. BMJ (Clinical research ed) 2015: 350: g7624.

MAGIC: Time to create guidelines and decision aids we can trust, use, and share


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.

References:

  1. Vandvik PO, Alonso-Coello P, Treweek S, Akl EA, Kristiansen A, Heen AF, Agoritsas T, Montori VM, Guyatt GH. Creating clinical practice guidelines we can trust, use and share: A new era is imminent. Chest. 2013;144:381-9.
  2. Kristiansen A, Brandt L, Agoritsas T, Akl EA, Granan LP, Guyatt G, Vandvik PO. Applying new strategies for the national adaptation, updating and dissemination of trustworthy guidelines: Results from the Norwegian adaptation of the American College of Chest Physicians Evidence-based Guidelines on Antithrombotic Therapy and the Prevention of Thrombosis, 9th Edition. CHEST, 2014. doi:10.1378/chest.13-299
  3. Agoritsas T, Heen AF, Brandt L, Alonso-Coello P, Kristiansen A, Akl E, Neumann I, Tikkinen K, van der Weijden T, Elwyn G, Montori VM, Guyatt G, Vandvik PO. Decision aids that really promote shared decision making:the pace quickens. BMJ 2015 350:g7624 doi