Number One in 20 Years of Publications

Originally Published in Inside Mayo Clinic Research on Aug. 14, 2015 

Having your research published in The BMJ, the prestigious medical publication formerly known as the British Medical Journal, is an accomplishment in itself. It’s another, altogether, to have the journal’s editor in chief call out your work first on the list of the 20 most extraordinary articles published in the past 20 years.

Dr. Victor Montori

“Victor Montori and colleagues changed how I thought when they introduced me to the idea of minimally disruptive medicine,” wrote Fiona Godlee, BMJ’s editor in chief, in the journal’s July 9 top 20 edition.

For those who haven’t heard of it, minimally disruptive medicine seeks to advance patient goals for health, health care and life, using effective care programs designed and implemented in a manner that respects the capacity of patients and caregivers and minimizes the burden of treatment — the healthcare footprint — the care program imposes on their lives.

In other words, they’re trying to make health care easier for patients — less burdensome, less confusing and less time consuming. This is particularly so in the management of chronic conditions, such as diabetes and depression.

Tucked into a small workspace in the Plummer Building, on Mayo Clinic’s campus in Rochester, Minn., members of Knowledge and Evaluation Research (KER) Unit work tirelessly to improve the patient-physician encounter and promote what they call a “patient revolution.”

KER Unit image-WP2It’s not a violent revolt or a bloody coup, but in many ways it does represent an upending of the current medical system. This revolution seeks to shift power away from providers, payers and health care institutions — the ivory towers of medical care in the U.S. — and puts that power instead into the hands of confident and well-informed patients.

The work in the KER Unit, however, is only as good as the clinical services and departments who share their patient experiences and then work together to help shape a better encounter for everyone.

“Our work would be nothing without our collaborations from across the clinic,” says Victor Montori, M.D., an endocrinologist and medical director of the KER Unit.

Dr. Montori’s deference and the KER Unit’s humility are certainly in keeping with Mayo Clinic’s collaborative, one-hand-washes-the-other culture. They don’t really want the recognition, they say. They would prefer to recognize their many partners.

And so, here they are: Partnering departments include Cardiology, Endocrinology, Emergency Medicine, Gastroenterology, Pharmacy, Primary Care, Psychiatry, the Office of Population Health Management, the Mayo Clinic Health System, and the Mayo Clinic Care Network.

The invisible work of managing your medical information

By: Jessica Ancker and Holly Witteman

It’s no secret that it’s a lot of work to be sick. Being diagnosed with a serious illness can open the door to scheduling extra doctor’s appointments, researching medical options, taking medications, investigating insurance benefits, and even changing what you eat and drink.
In our research project, we found that there is also another type of work involved in living with chronic illness. People managing their health also need to manage their medical records. This means doing things like transferring information from doctor to doctor, tracking information about treatments and hospitalizations, and correcting mistakes in records. We called this type of work “invisible” because although it takes a lot of time and effort and is an important step in getting good medical care, for the most part, even patients’ own doctors and nurses may not be aware of the work that patients must put into these tasks.
We interviewed 22 people in New York City, each of whom had at least 2 chronic illnesses (including diabetes, chronic pain, depression, HIV, hepatitis C, and a wide range of other conditions). Because of the complexity of their medical conditions, these people saw an average of 5 different doctors.
These interviews showed that transferring patient information from organization to organization was extremely important. One man told us that his surgery had to be canceled because laboratory test results from his primary care doctor didn’t get delivered to the surgeon on time. Another told us that one of her medications was discontinued because the insurance company said the physician had provided insufficient information about her condition.
But what to do to prevent these problems in current systems was somewhat less clear.
We found that people had different approaches to the challenge of getting their information moving across institutional boundaries. Some patients (especially those who had had bad experiences in the past) took a very active role in obtaining copies of their records, test results, and other information, and sharing it with all their doctors. Other patients said that they expected the healthcare system to take care of this task for them. “They’re supposed to have all the information. They’re supposed to look it up,” said one person.
When patients took the lead in transferring their own medical records, we found that they approached the problem creatively, using a variety of solutions. Some of them memorized key pieces of information. Some of them kept an electronic spreadsheet that they updated every time they saw their doctor. Others tracked key information (like their medication list) through handwritten notes. However, one problem we discovered was that when patients track data about their health, physicians might not really trust that patient-collected data. Doctors we interviewed in our study said they were more likely to trust information provided directly by a doctor or by an electronic tracking device such as a blood pressure monitor.
Another issue we discovered was that patients were making judgments about what information to share, and those judgments were not always the same as what the doctors wanted. For example, patients didn’t bother sharing information that they thought was irrelevant (such as one woman who thought that the treatment she received from her dermatologist was unlikely to be of interest to her primary care doctor). Patients also didn’t bother sharing information if they thought the doctors were already in contact with each other (such as several patients who believed – mistakenly – that doctors at 2 different institutions could see each other’s electronic medical records). Occasionally, we encountered a patient who had privacy concerns about sharing information, but this was not very common among the people we interviewed.
Finally, we found that patients were putting in a tremendous amount of time and effort getting information transferred from one setting to another or correcting mistakes in their records. For example, one man used an electronic account to log into his own medical record and found a mistake. When he tried to correct that information, he was referred from a technical support phone line to a doctor’s front desk staff back to a technical support email address without being able to get the problem fixed. Another one received a home medical device without any instructions for use, and contacted the manufacturer, the insurance company, and 2 different doctors’ offices without success. Several people had lengthy stories about coping with insurance company denials of coverage or other problems.
After these interviews, it is clear that this burden of information management is an additional problem for people with chronic disease to deal with. In our paper, The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers, we called this a “systematically regressive tax on illness.”
We think that there’s a role for information technology to help reduce this burden. One solution could be health information exchange technology, which is designed for health care professionals to exchange patient records. Another could be the personal health record, which is designed for patients to keep and manage their own medical information. The first can be thought of as a doctor-focused solution, the second is a patient-focused solution. We think both will be needed in the future so that sharing information is easy and seamless, so that physicians can have confidence in patients’ information, and so that patients who want to do so can take an active role in managing and checking their own data. It will be important to make sure that these kinds of systems are designed for the ways that patients and health care professionals want to manage this kind of information. By designing systems that truly work for the people who will use them, we can reduce the additional burden of invisible work that goes along with living with chronic disease.

JessicaJessica Ancker is an Associate Professor of Healthcare Policy and Research, Healthcare Policy and ResearchWeill Cornell Medical College.  Jessica’s research focuses on the use of health IT by patients and providers, effects on comprehension and decisions, and effects on healthcare quality.

HollyHolly Witteman is an Assistant Professor, Tenure Stream, Department of Family and Emergency Medicine; Office of Education and Continuing Professional Development, Faculty of Medicine, Université Laval, Quebec City, Quebec, Canada.  Holly specializes in the study of interactive media for health communication and decision making, focusing on contexts that require communicating numerical data, interpreting risk information, and trading off risks and benefits.

Patients’ experiences of treatment burden: so much more than a series of physical side effects!

Living with a long term condition is hard work.  No-one would argue that coping with chronic pain, breathlessness or fatigue isn’t difficult, nor that health services and professionals shouldn’t do what they can to try and relieve these symptoms.  The benefits of medication, surgery and rehabilitation are undeniable; they save lives and reduce symptoms for millions.  But in the search for cures, have we underestimated the costs and disruptions that treatments generate for patients? And when patients ‘fail’ to follow health professionals’ recommendations, why do we assume that the problem lies with the patients and not the treatments? These are important questions that the Minimally Disruptive Medicine movement and our recent review paper seek to address.

We systematically reviewed the qualitative literature on treatment burden and identified a total of 11 papers which investigated patients’ (and sometimes also families’) perspectives of treatment burden; what it felt like to live day-after-day with often complex treatment regimes, the negative impacts they experienced  and how they tried to minimise these.  The papers we reviewed provided an international perspective and included participants aged 8-96 with a range of long term health conditions (affecting the cardiovascular, respiratory, digestive, urinary, endocrine, and neurological systems) which varied in terms of the severity, criticality and impact of both the disease and the treatment.

We identified eight classes of treatment generated disruptions : physical symptoms and side-effects; negative emotions; stigma and identify disruption; loss of meaningful activities living with uncertainty; loss of freedom and independence; feeling isolated and inadequately supported; and,  experiencing relationship strain. Our paper provides definitions for each of these and quotes from patients to help explain and illustrate what treatment burden ‘feels’ like.

Looking at this list of impacts, I think it is clear that the experience of treatment burden is much more than the list of medication side-effects it is often equated to. Treatment side-effects such as nausea, rashes, palpitations etc are well recognised in medicine; indeed, many papers on treatment burden focus solely on these physiological side-effects. Whilst we found that physiological side effects were important we also identified that in many cases it was not the side-effects themselves that were most significant, but the knock-on impact that those side-effects had on people’s valued activities, relationships and identity.  This aligns with Amarta Sen’s capabilities approach ,  and views healthcare as much more than ‘healing the body’ but rather enabling people to ‘do, feel and be’ ‘what, how and who’ they choose (read more in this excellent paper by Vikki Entwistle and colleagues). Viewed from this perspective, treatments are only effective when they not only relieve the original symptoms but when they also do not compromise people’s capabilities to function as they wish in all domains of their life (physical, psychological, social and relational).

This review also identified how people attempt to avoid or minimise treatment burden. One  approach to minimising BoT was to psychologically normalise treatments through self-talk and reframing. Alternatively, many patients stopped or modified their treatments. We called this ‘rationalised non-adherence’ to reflect the rational nature of these acts when seen from the perspective of people trying to maximise their capabilities and life quality. Clinicians working in end-of-life care appeared comfortable discussing and supporting non-adherence decisions; however, in other healthcare arenas patients’ non-adherence was often frowned upon by professionals and became a ‘secret-act’, generating guilt, disrupting relationships and reducing outcomes.

We think that it’s time that the ‘patient-centredness’ agenda is extended to more fully consider treatment burdens and rationalised non-adherence in everyday clinical encounters. Clinicians need to engage patients in conversations that allow them to be honest about treatment burden and discuss adherence difficulties without fear of judgement. Appropriate modifications can then be made that minimise disruptions to all aspects of patients’ lives.

Sara Demain

Sara Demain, Associate Professor, Faculty of Health Sciences, University of Southampton

Sara is supported by a post-doctoral fellowship awarded by the UK National Institute for Health Research. The views expressed in this publication are not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.

Burden of treatment: the work of being a patient

By Tran V-T.

 A patient with type 2 diabetes could spend a little over two hours a day on average following all doctors’ recommendations [1].

About 45% of the population has at least one chronic condition. In addition to the burden of illness, patients are affected by the burden of treatment, defined as the impact of the “work of being a patient” on functioning and well-being. This work includes medication management, self-monitoring, visits to the doctor, laboratory tests, lifestyle changes, etc. Coping with all these healthcare tasks requires a significant amount of time, effort, and cognitive work from patients and caregivers.

We performed a multinational study to better understand the burden of treatment from the patient’s point of view [2]. A total of 1,053 participants in 34 different countries answered a series of open-ended questions about what doctors’ recommendations they found difficult to follow and why and how they adapted their everyday life to their treatments.

Patients expressed how healthcare tasks imposed on them by the healthcare system, such as arranging doctors appointments and filling out paperwork, affects their daily lives,“Being sick also adds a lot of extra tasks, paperwork and appointments. To keep myself healthy, I miss out on a lot of things that people my age take for granted – working fulltime, cooking, showering every day, going out to socialize” (25-year-old woman with Ehlers-Danlos Syndrome from the United Kingdom). We classified these tasks as 1) managing medications, 2) lifestyle changes, 3) condition and treatment follow-up, 4) paperwork tasks, and 5) learning about the condition and treatment (e.g., medication management, lifestyle changes, follow-up, etc.).

Second, we identified the factors that aggravated the burden of treatment. They were both structural factors (e.g., medication is not available at the pharmacy, access to test results, lack of coordination between care providers, wait lines, lack of parking space, etc.) and personal factors (patients’ beliefs about their conditions and treatment and difficulties they could have in their interactions with others). For example: “Trips to hospital at least every three months (are) burdensome because of distance and also parking charges. Annual reviews are difficult because there are multiple investigations required and these take place over multiple different appointments and sometimes at different hospitals in the same group.”(55-year-old woman with diabetes and a cardiac condition from the United Kingdom).

Finally, patients reported consequences of the burden of treatment, which could lead to poor adherence to treatments, financial burden, impact on professional, family and social life. For example:There is stuff that I am SUPPOSED to do, and stuff that I actually DO.  If I did everything I am SUPPOSED to do, my life would revolve around doctors and tests and such and there wouldn’t be very much left for living my life.  So I’ve made a bunch of choices (with the input of my family and friends, because it’s important for me to have their support).”(46-year-old woman with a mitochondrial disease from the United States).

To our knowledge, this is the first study to provide a comprehensive view of the components and consequences of the burden of treatment across multiple countries, settings and treatment context. Our findings fit the Cumulative Complexity Model [3] in that the burden of treatment perceived by patients is a complex phenomenon resulting from the combination of 1) the workload of healthcare imposed on patients; 2) patients’ capacities to integrate this workload of healthcare in their daily lives in terms of energy, time, money or support; and 3) the context, especially the structure of healthcare and social support from their families, relatives, and friends.

Our findings have several implications. First, our results may help clinicians better understand and identify patients who are overwhelmed by their treatments. In a previous study, we have shown that physicians fail to assess the burden of treatment of their patients [4], partly because it expresses a patient experience that is not shared in depth during consultations [5]. Second, healthcare should be integrated and coherent: every therapeutic intervention imposed on patients should be carefully weighed in terms of clinical benefit, interaction with other treatments, possible harms, and potential burdens. Such consideration could result in the prioritization of tasks and a net reduction in healthcare tasks imposed on patients. Third, this study highlights the need to change the paradigm of care for patients with chronic conditions and end fractured care focused on individual conditions. Treatment objectives should not be based solely on attaining specific goals in specific diseases but also on mitigating the impact of conditions and treatments on patients’ professional, family and social lives, for minimally disruptive medicine.

This preliminary work opens the door for more studies about the burden of treatment. As of today, researchers have only considered the burden of treatment for individual patients. I strongly believe that capacities of the patients’ families play a significant role in how patients can cope with the burden of treatment. In a future work, we would like to investigate this area.

IGroupe2n addition, our research has highlighted several aggravating factors of the burden of treatment (especially structural and personal factors) which could be targets for intervention to reduce the burden of treatment and improve patients’ quality of life.

Burden of Treatment decision aid


  1. Russell, L.B., D.C. Suh, and M.A. Safford, Time requirements for diabetes self-management: too much for many? J Fam Pract, 2005. 54(1): p. 52-6.
  2. Tran, V.T., et al., Taxonomy of the burden of treatment: a multicountry Web-based qualitative study of patients with chronic conditions. BMC Med, 2015. 13: p. 115.
  3. Shippee, N.D., et al., Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol, 2012. 65(10): p. 1041-51.
  4. Tran, V.T., et al., Development and description of measurement properties of an instrument to assess Treatment Burden among patients with multiple chronic conditions. BMC Med, 2012. 10: p. 68.
  5. Bohlen, K., et al., Overwhelmed patients: a videographic analysis of how patients with type 2 diabetes and clinicians articulate and address treatment burden during clinical encounters. Diabetes Care, 2012. 35(1): p. 47-9.

REPOST: Burden is a Heavy Word BUT Capacity Can Lighten It

This is a repost from Naturally Sweet Sisters from March 3, 2015

 I recently had the pleasure of listening to a presentation called Minimally Disruptive Medicine with Victor Montori, MD, @vmontori brought in by Joyce Lee, MD, @joyclee through the C3N Project, #c3n an exciting collaborative group of clinicians, patients, researchers that are focused on creating patient-centered care for patients with diabetes.  

While Dr. Montori worked extensively with patients living with Type 2 Diabetes, I still found the idea of burden and capacity as deeply meaningful for our world of T1d.  So much so, that I wrote down a few thoughts to help encourage other clinicians and researchers a clear way to understand what patients and caregivers deal with ‘behind the scenes’ of a three-month clinic appointment. 

How do some patients fare better than others?  How do we share those things that make some patients more successful?  The nagging unanswered questions remain.  At the end of this article, I tacked on some positive skills that we as a family have incorporated and continue to use today.  I don’t know if there is a right or wrong way to approach this – I just know there are better ways.

This isn’t typical content for Naturally Sweet Sisters, but I believe from places of darkness, there can be much good – like care that is centered around what a patient truly needs.

Don’t forget to find us on Twitter @natsweetsisters  #c3n #makehealth 

I own a car.  Maybe you do as well.

If you choose to own a vehicle, than you accept that you must care for the car; such as purchase gas, perform maintenance checks and pay for repairs.  You also accept that in order to drive the vehicle, you must obtain a driver’s license and purchase car insurance.  Mostly (and all of us on the road hope for this!), you accept that you need to obey traffic laws and drive in conditions that allow you to be prepared for anything that you could jeopardize your vehicle ownership, such as locking the doors at night or stowing the vehicle in a garage during inclement weather.

While this is actually a burden (think in terms of money, time, effort, wasted thought), I bet no one would ever consider it as such.  The alternative to a car is being stuck hitching a ride on public transportation, a bicycle or horror of horrors in this day and age, your own two feet.

The burden of owning a car doesn’t overwhelm me because I created the capacity to easily bring it into my life.  I have enough financial, emotional and physical space to allow for a vehicle to not overpower my well-being.  Within my personal limits, the burden of a vehicle can be managed.

Let me emphasize my enjoyment of owning a vehicle, take one look outside my window at the current mid-western weather of March snow, sleet and sub-zero temperatures, and I think you would be pretty happy to not have to trudge to a bus stop.

Let’s take this positive vehicle burden analogy and compare it to the burden of Type 1 Diabetes (T1D).

Unlike a car purchase, we did not choose to bring T1d into our home.  

Unlike a car purchase, there is no other option.

Without a choice (or maybe because the choice was too horrific to consider), we forced ourselves to accept the steep learning curve that comes with the maintenance of 24 hour/7 days a week, blood sugar checks, manual or electronic logs, insurance coverage, diabetes supply scripts, orders, purchases (injection needles, multiple insulins, pens, pen needles, glucagon, insulin pumps, cartridges, reservoirs, tapes, continuous glucose monitors, lancets, test strips, needles, adhesive wipes, unisolve, neosporin, numbing cream, alcohol swabs, glucose, juice, candy and more such as other medications), the clinic visits, the endocrinologist, CDE, the on-call physicians, the ER visits, the insulin dose changes, medical records, the outreach support, the specialist visits, the school caregiver education, 504 planning, fundraising and advocacy.  SO.MUCH.ALL.THE.TIME.

We were forced to accept all of these things immediately because the burden was laced heavily around the body of a tiny three-year old little girl that we deeply loved.  Our capacity for love is endless and that has always been the reason we could manage the burden.  Even for a second diagnosis in an equally loved eight-year old little girl.

As much as I tend to tuck that heaviness away and disguise it in the love that I feel for my children, it does rear it’s ugly head from time to time.

Burden is a heavy word.  

Like in the morning where I am busily reading our daughters for school and a pump alarms a low battery alert.  Fumbling through the steps to change the battery; prime, load and fake out a cannula fill, I make a mistake.  In my hurry, I miss the obvious low cartridge of 10 units of insulin or less.  This second process makes me repeat all of the first steps; prime, load and fake out a cannula – EXCEPT I decide that I might as well change out her infusion site too, so a real cannula fill comes but only after I poke her with a sharp needle, which then her tears tell me she DID.NOT.LIKE.AT.ALL.

The burden weighs heavily on me as I hastily wipe her eyes and pretend that all is well so that I can get her to school on time.  It hits again when I drop her off and watch her walk into a school where most certainly, no other child had to take a shot to get there.

When I get home, I remember that I forgot to make a change to her insulin to carb ratio, which means that yet again, I will need to handle her pump and disrupt her after school play time.  The burden feels even heavier as I think about the scratch that I saw near the cartridge cap on the pump and wonder if I need to call her insulin pump company to report a possible warranty issue.  Since my daughter is now at school and I can’t find her pump serial number, I add it to the mental check list of items that will be performed when she is back at home from school.  Then, I force myself to begin to think of the work that I have actually been hired and paid to do.  The burden never fully resolves as each day brings a new set of circumstance.

Burden is a heavy feeling.

My days are full of types of wonder.  Trying to act appropriately for the psycho-social restrictions that T1d dictates and hope that my daughters, ages 11 and 13 and managing a day at school, changing classes, without an aide or a school nurse.  Left to much of their own skills, we have worked out secret plans and strategies in which they test blood sugars and text me.  My “wonder” is akin to worry at times when those checks/texts are missed and I am left hoping that all is well.  I then wonder at the amount of self-control that I possess and I wonder at why I do.  Is it perhaps the clinical distance that I have forced myself to take in order to raise successful, independent children.  There are more times that I can count in which I just wanted to keep them safely at home, where I can ensure that they are fine under my watchful eye.

As they come home from school, I stifle the urge to ask their blood sugar numbers before they tell me about their day.  Catching my older, savvier child’s eye, I wonder how much she knows and if she is holding back from telling me about the unpleasant side of attending school with T1d.  I listen carefully.  I can’t make mistakes because the burden is laced heavily in the parents trudging along before me which warn that helicopter parenting leads to noncompliance in teenagers.  Or worse, parents that ignored the signs of depression.  Instead, I wait and listen to stories of the day, ensure they eat a healthy, protein rich snack that keeps blood sugar from skyrocketing before we eat dinner an hour later.  When they are gone, I fetch their CGMs for a quick review and double check backpacks to make sure they have enough low blood sugar supplies for the next day.  The burden is that T1d sucks much of the joy of regular interaction with my children.

Burden is a heavy state of being.

There are a few moments in which I procrastinate and then, feel guilty.  It comes as I lie in bed and listen to the CGM give its first bleep of warning which is programmed at UNDER 90 mg/dl.  I hear it and I wonder if my sleeping husband is also listening.  Without a sound, I wait a moment longer and then feel a guilty rush for not running right out the room.  The burden whistles softly as I hand out a juice box in the dark while making as little noise as possible so she can sleep.  My head, tired from eight long years of sleep deprivation is heavy as the weight of a ton, but the guilt is in that thought of self-pity, is that I am not the one with the ‘real’ burden of T1d.  The sweet sleeping cherub that I awoke for is the one to be most concerned for.

The burden flows heavy through the early alarm and as I struggle out of bed just a few hours later to wake my girls, I must first check their blood sugars and pre-bolus their breakfast insulin.  Even heavier burden comes seconds later as the resulting number for one of the girls, is much too high for our upcoming clinic appointment.  Feeling heavily defeated before the A1c has been performed, as we have steadily increased her insulin ratios against the swarming tide of growth and puberty hormones to no avail. Later, I will try to call in her numbers but will have to wait through the standard time of 36 hours for a call back.  By then, her numbers will have stabled and I will be faced with the question of what to change, especially during the night, when she (and I ) most need our rest. Stuck in an uncomfortable position because when I decide not to implement the changes, I must then explain why to endocrinologist that may feel like checking over night is something patients only need to do for the first few months. I wonder why I sent in the numbers at all as it just increased my burden tenfold.

Burden, in all it’s heaviness is always there.  It ebbs and flows but it is never quite alleviated.  We may pretend it doesn’t matter, but it does.  When T1d patients think of a cure, they are looking for relief of that burden.

And YES!  A cure would be the ultimate relief.

We have learned other ways to minimize burden (and while it is not perfect, it can be helpful).

1.)  We embraced T1d education and continue to do so.
Read everything.
Ask questions.
Establish a solid team (parents, child, school, clinic and coaches/caregivers)
Never stop trying new things.

2.)  We prepare for not one T1d event, but for at least three in advance.  
Keep a calendar.
Map out the day.
Squirrel away food, meter and pump supplies.
Have a plan.
Understand that mistakes will be made and you will head back to #1 and learn.

3.)  We redirected our world to better suit our T1d needs.
Learn to say no.
Learn to say what you need – not just what you want.
Learn to forgive.
Learn to heal.
Learn to accept.

4.)  We simplified T1d.
Become a hacker, designer, creator, risk-taker.
Make it easier to do what needs to be done.. IE, by creating T1d stations everywhere you spend time. Look through new eyes at common things.. IE,  make a linen closet into a supply closet.
Friends shying away from sleepovers? Have them at your house.
Dinner with night owl friends?  Suggest appetizers before you go.
Carb counts missing?  Use an app, book, or best guess and check again in an hour.

5.)  If it isn’t working for your T1d, than let it go.
This is true for processes and people, including members of your team.

The positive of our T1d burden is that even though it is always there, we have continue to have endless amounts of capacity to care for our child, simply because we love them.

I would love to hear your thoughts on burden and capacity.  Tweet me @natsweetsisters or drop a line at our facebook page, or leave a comment on the blog.

Tres Dias Por Nada

La historia de Juan, paciente peruano con diabetes

Marcia Moreano Sáenz MD1,2, María de los Angeles Lazo MD1,3, Álvaro Taype Rondán MDMiguel Moscoso Porras PT1, J Jaime Miranda MD, MSc, PhD1

1 CRONICAS Center of Excellence in Chronic Diseases, Universidad Peruana Cayetano Heredia, Lima, Peru (

2 Family Medicine, Universidad Peruana Cayetano Heredia

3 Unidad de Conocimiento y Evidencia (CONEVID), Universidad Peruana Cayetano Heredia, Lima, Peru

En el Perú, el sistema de salud público nacional se caracteriza por ser de difícil acceso para poblaciones de bajo nivel económico, con un sistema de citas deficiente que se traduce en esperas prolongadas, una mala calidad de atención que se limita a la prescripción, y un inadecuado seguimiento de la enfermedad. Esto es especialmente perjudicial para aquellos que sufren de enfermedades crónicas como la diabetes, que requieren evaluaciones continuas y educación al paciente.

Para ilustrar esta situación, exploramos el recorrido de un paciente que debe acceder al sistema de salud público peruano para ser atendido en el Servicio de Endocrinología de un hospital nacional:

Juan, un padre de familia de 56 años de escasos recursos económicos, normalmente atiende sus necesidades de salud en un “puesto de salud” (nombre que designa a los establecimientos de salud del primer nivel de atención en el Perú) y afortunadamente cuenta con el seguro integral de salud (SIS),1 que se otorga en el Perú a pacientes calificados como pobres o extremadamente pobres.

Juan ha sido recientemente diagnosticado de diabetes y el médico del puesto de salud le comunica que debe ser atendido en un hospital nacional de mayor complejidad (Ministerio de Salud de Perú)2 porque las pruebas adicionales y los medicamentos básicos no están disponibles en su puesto. Para ello, le entrega una “hoja de referencia” (formato necesario para la atención en el hospital mediante el SIS). De esta manera, Juan coordina con su familia y pide permiso en su trabajo para realizar el viaje hacia el hospital más cercano, que en este caso le queda a un par de horas de distancia de su hogar. Hasta entonces, deberá adquirir, si cuenta con el dinero necesario, sus medicamentos en una farmacia privada.

El día coordinado, Juan acude al hospital con su “hoja de referencia” para solicitar una cita. Se acerca a la oficina de admisión, en donde después de hacer una cola por 20 minutos, el personal administrativo le indica que lo más pronto que su cita puede ser programada es en dos meses. Juan no tiene otra opción más que esperar esa fecha  pues no cuenta con los recursos económicos necesarios para acceder al sistema de salud privado.

Finalmente llega el día de su cita, ese día sale de su casa a las 6 de la mañana y llega al hospital dos horas más tarde. Como paciente nuevo, presenta sus documentos (hoja de referencia, copia de documento nacional de identidad y copia de la ficha de inscripción SIS) en la ventanilla de admisión. Luego de 30 minutos recibe un número de historia clínica, un carnet de atención, un formato único de atención e instrucciones de ir al área de consultorios.

Al encontrar el consultorio de Endocrinología, Juan se aproxima a la ventanilla de recepción y entrega sus documentos al personal administrativo quien le indica que será llamado para ser atendido de acuerdo al orden de  llegada. Después  de dos horas de espera, Juan es llamado al consultorio, donde le toman medidas de  talla y peso. El médico lo recibe en su consultorio por 15 minutos,  le indica algunos exámenes de laboratorio, le entrega una receta escrita a mano. Juan no entiende para que son los exámenes o que dice la recete pero siente que el médico no tiene tiempo para explicarle. También le da  una cita después de contar con los resultados, cita que muy probablemente tendrá lugar dos meses después. En esta cita, Juan no pudo preguntar sobre su pronóstico, su dieta, uso de ciertos productos “naturales” que le han recomendado sus familiares, y otras inquietudes.

Al salir de la consulta, Juan acude a la farmacia del hospital para recoger sus medicamentos y tiene que esperar  15 minutos para entregar la receta y otros 15 minutos para recibir los medicamentos. Posteriormente acude al laboratorio para realizarse los estudios solicitados pero le indican que los mismos se deben realizar el día siguiente a las siete de la mañana. Finalmente llega a su casa aproximadamente a la 2 de la tarde.

Para poder hacerse los exámenes, Juan debe solicitar permiso en su trabajo por un día más. Al día siguiente, acude al laboratorio. Después de 40 minutos de espera puede entregar la orden médica y pasa a la sala de  toma de muestras, donde es atendido 30 minutos después.  Al terminar se le informa que él o un familiar podrán recoger sus resultados a partir de las 2 de la tarde del día siguiente.

Al finalizar este largo trayecto, podemos concluir que:

  • Juan perdió por lo menos tres días de trabajo, lo cual afecta aún más su ya débil estado financiero.
  • Fue sometido de manera repetida a largos tiempos de espera.
  • Fue atendido brevemente.
  • No ha obtenido información ni educación sobre diabetes y autocuidado de su salud.
  • No ha tenido una evaluación ni completa ni multidisciplinaria.
  • No tendrá un control adecuado de la glucosa, pues en la posta de salud más cercana a su domicilio no cuentan con lo necesario para realizar su monitoreo de glucosa periódico y si cuentan con este recurso el paciente deberá pagar dinero por cada control, ya que su seguro de salud no cubre éste servicio.
  • Deberá esperar aproximadamente dos meses para la siguiente consulta médica.

Si bien este caso es lamentable existen situaciones aún más complicadas. Por ejemplo, si Juan fuera un habitante de una zona rural se enfrentaría a más limitaciones como la falta de personal médico en la posta de salud cercana, la lejanía del hospital más próximo que puede estar a varias horas o incluso días de viaje, y un acceso mucho más limitado a medicamentos, que deberá adquirir en alguna ciudad cercana. Si Juan fuera analfabeto o tuviera un nivel de educación muy escaso tendría mayor dificultad para comprender las instrucciones brindadas y navegar el complejo sistema de salud.

Por otro lado, si Juan contara con los recursos económicos necesarios para acceder al sistema de salud privado, podría obtener una atención médica en menos tiempo (ver figura 1), aunque la calidad de la misma no sea necesariamente superior. Estos datos reflejan las inequidades en el acceso a los servicios de salud que se da en países de bajos y medianos ingresos económicos como el Perú.



* La información para construir la Figura 1 se ha elaborado en base a la técnica de observación participante y tomando como referencia información de dos estudios de investigación3,4

De esta manera es claro que en el manejo de enfermedades crónicas como la diabetes, que requieren educación, un seguimiento estrecho y un manejo multidisciplinario, requiere de manera urgente la identificación de barreras de acceso a la atención ( y la implementación de medidas de salud pública que permitan facilitar el acceso al sistema de salud de manera universal, y una atención oportuna, con  la calidad y el respeto que merecen. También revela como las inequidades e ineficiencias del sistema faltan el respeto a la capacidad – limitadísima en muchos casos – que tiene los pacientes mas necesitados para acceder al cuidado medico e implementar el autocuidado.

Agradecimientos: Ana María Castañeda Guarderas y René Rodríguez Gutiérrez por su amable revisión a este artículo.


  1. Seguro Integral de Salud. Visitado el 24/03/2015 en el URL:
  2. Ministerio de Salud – Perú. Visitado el 24/03/2015 en el URL:
  • Instituto Nacional de Estadística e Informática. Encuesta Nacional de Satisfacción de Usuarios del Aseguramiento Universal en Salud 2014. Visitado el 24/03/2015 en el URL: file:///C:/Users/Administrador/Downloads/libroINEI-IMPO%20(1).pdf

Cárdenas María Kathia, Morán Dulce, Beran David, Miranda J Jaime. Identifying the Barriers for Access to Care and Treatment for Arterial Hypertension and Diabetes in Lima, Peru. Executive Summary. Visitado el 25/03/2015 en el URL:

REPOST: Why do people with multiple long-term conditions report worse patient experience in primary care?

Reposted with permission from Charlotte Paddison (Original posted on Cambridge Centre for Health Services Research on March 25, 2015)

Paddison, C.A.M., Saunders, C.L., Abel, G.A., Payne, R.A., Campbell, J.O., Roland, M. Why do patients with multimorbidity in England report worse experiences in primary care? Evidence from the General Practice Patient Survey. BMJ Open 2015;5:e006172 doi:10.1136/bmjopen-2014-006172. Access this article here.

Here at the CCHSR we are very interested in multimorbidity. In our recent paper, we used data from nearly 1 million patients in England to understand how people with more than one long-term condition experience care provided by their GP surgery. We found that people with multiple long-term conditions reported worse primary care experiences, when compared to patients in our study who had either one, or no, long-term condition.

Why do people with multiple long-term conditions report worse primary care experiences?

Our results showed that health-related quality of life, particularly in the domain of ‘pain’, might be important. Differences in perception – influenced by pain or depression – could affect the way patients’ report their experiences of primary care. On the other hand, it could be because people with multiple long-term conditions have different and more complex needs than those with single or no long-term conditions. These needs don’t fit well with guidelines designed for patients with a single condition, or health policy framed around the management of a single condition.

Health policy makers and clinicians need to recognise that the patient experience and health care needs of people with multimorbidity are likely to be different to those with a single long-term condition. We agree with Victor Montori on the need to minimise the burden of treatment, as well as the burden of disease; and with Chris Salisbury on the need to (re) design health care for people who use it. As highlighted by Reid et al in the BMJ, chronic pain is very common, and our results suggest recognising and managing pain may be important to improve quality of life and patient experience for people with multiple long-term conditions.

Interested to learn more?

We’ve also blogged previously on what multimorbidity means (and doesn’t); the importance of continuity of care for people with multiple long-term conditions; the relevance (or otherwise) of care plans; why single disease guidelines and protocol-driven medicine don’t work for people with multimorbidity, and the intellectual work needed to provide an alternative.


Balancing competing priorities: Managing illness vs. living life

By Catherine Maguire

The high treatment burden in chronic respiratory illness is very real. As a 28 year old living with Cystic Fibrosis (CF), when healthy I am usually on 16+ medications and engage in over 2 hours of treatments daily. I currently take up to 47 tablets daily, depending on my food intake. I usually have 1-2 hospital admissions per year lasting 10-14 days each, for routine intravenous antibiotics and intense chest physiotherapy to clear out my lungs. Of course, these figures skyrocket when I have an exacerbation.

This treatment schedule isn’t always easy to manage when integrated into the context of trying to live a “normal” life; including professional employment, post graduate studies, social affairs, playing mum to two beloved dogs, maintaining a house and being a fabulous wife.  I’d like to provide some further insights into what the treatment burden involves for individuals like myself.

For me, treatment burden from Cystic Fibrosis falls into six main categories:

  1. Participating in physiotherapy for airway clearance every day takes at least an hour. Add in my usual nebuliser regime and that figure doubles. I don’t always have time for dirty dishes, or to put that extra 30 minutes into proof-reading my essay – not because of my CF per se, but because of the treatments to keep my CF at bay.


  1. BOTHER: Organizing my own medicines into pill boxes each week; mixing powder antibiotics with saline/water for injection prior to nebulization; sterilizing equipment; setting up and dismantling my physiotherapy table each day. While all of these aspects to treatment may seem “petty” in the grand scheme of things, they not only take further time out of my day, but they are just a nuisance, a bother. And anything which is perceived to be a bother requires additional incentive for compliance.


  1. PHYSICAL EXHAUSTION: Participating in daily forced airway clearance (and therefore controlled breathing and coughing for over an hour) is actually very exhausting! I think this treatment is actually more straining and demanding on my energy than the “actual” symptoms of the disease.


  1. ACCESS: There are numerous “systems” issues with healthcare in Australia. Now don’t get me wrong, we have some of the best health care in the world and I am forever grateful for the level of care I am provided with under Medicare. This said, there seems to be some mini hurdles which could easily be rectified, such as having to navigate dual pharmacy systems (local community pharmacy and hospital pharmacy for specialised medications). Additionally, access to the CF clinic staff closes by 5pm which can be another obstacle for working professionals. Lastly, I’ve also found it difficult to access regular, affordable, reliable physio-in-the-home to assist with daily airway clearance.


  1. COST: Prescription medications, even at discounted rates are expensive. This coupled with the high volume of non-prescription medications such as vitamins and supplements due to pancreatic insufficiency, create a huge cost. Other costs include physio-in-the-home; equipment costs; unpaid leave from work for appointments and hospital admissions; costs of a high calorie diet; hospital parking; paying for hospital cafeteria food and take-away (because food served to actual patients is often inedible and does not always meet CF dietary requirements); ridiculously expensive travel insurance… the list goes on.


  1. PSYCHO-SOCIAL: The burden from this intense treatment regime creates some real barriers to social affairs, employment and career advancement, housework, tertiary studies and being a fabulous wife. But psycho-social impacts extend beyond the consumer and onto loved ones and partners. When these people act as carers (such as to help with additional physiotherapy) the relationship dynamics change and it can create a myriad of psychological consequences. In regards to psycho-social support – this is currently minimal. If I visit a psychologist in my community the likelihood is I would spend the first few sessions educating them about the psychology of chronic illness and what CF is / how this impacts my life. I would also only be entitled to limited sessions and need to pay a gap fee depending on their rates. People with complex health issues require specialist psycho-social staff with expertise in chronic illness and treatment burden. How is it I am living with a chronic terminal illness yet the clinic currently has no CF counsellors, psychologists or social workers funded by the hospital?

Having said this, imagine if some of the aforementioned obstacles could be addressed. Now this may be a very ambitious wish list, but here are some solutions which would make the treatment burden from CF much easier:

  • Providing a life-long health care card (regardless of income) to assist with the costs of medications.
  • Streamlined pharmacy systems whereby you collect all medications from one pharmacy or even better – home delivery! This would (a) reduce the extensive pharmacy waiting times at the hospital (b) reduce logistically having to negotiate drugs at separate pharmacies (c) having to remember which scripts to get from which doctors and (d) at which pharmacy.
  • Discounted parking rates at the hospital for frequent-flyers.
  • Affordable (or ideally free) reliable physiotherapy in the home.
  • A push for pharmaceutical companies to revolutionise how our medications are delivered into the lungs by developing more puffers/quick inhaled medications which are just as effective as nebulised medications. Nebulisers take time, puffers don’t. Likewise, for drugs that must be nebulised, have them in ready-to-go nebules so we don’t need to mix them with saline/water for injection prior to use.  Perhaps nebuliser pieces could also be dishwasher safe to eliminate the sterilisation process.
  • Routine access to psycho-social services, i.e. a psychologist/social worker/counsellor who specialises in chronic illness to be available for both outpatients and inpatients.

Many chronic illnesses including CF require a complex daily regime in order to prevent the progression of the illness. On a daily basis I am forced to make a cost-benefit analysis with my treatment schedule: it may be costing me 2-3 hours of treatments today, however it will hopefully be a worthwhile investment; increasingly my quantity and overall quality of live into the years to come. My decision, while logical, is not always easy to make when considering the competing priorities in my life at any given time. Imagine how many consumers engage in this cost-benefit analysis and choose non-compliance? As a medical community I urge us all to look beyond the actual diagnosis and symptoms of the disease, but to also consider the very real impacts the treatment schedule has on the everyday lives of consumers.

My Minimally Disruptive Medicine (MDM) Experience

The concept of Minimally Disruptive Medicine in practice attempts to understand the patient’s balance of their workload of life and their care and the capacity they have to take on that workload.  Admittedly, this is a concept many of us as clinicians suspected we understood for our patients, but when we begin to scratch the surface, we truly lack an understanding. We also often feel inhibited to seek understanding of these issues and support true shared decision making when constrained by our settings that are more influenced by government and insurance-based quality metrics. And even when we take the time to understand, we are further constrained by insufficient institutional frameworks to support patients as we seek to help them gain capacity when factors feel “out of our control” (i.e., financial difficulties to afford care or healthy food, deep-seeded loneliness for patients isolated by their conditions, and complex home environments).

When we think of engaging patients in healthcare, when excessive burden exists and a lack of capacity – how will we create healthcare that cares for our patients in a kind and careful way, such that they are engaged in the pursuit of their health, while still having capacity to pursue their life’s hopes and dreams? And why will patients choose to engage with us? Being able to identify the factors surrounding workload and capacity has been an eye-opening experience – encouraging because of the ability to recognize the factors when they arise but at the same time frustrating when you recognize as a provider our limited ability to adequately support the changed needed in certain situations of workload-capacity imbalance.  Opportunities exist although they will require both partnerships within communities and significant changes in how we have approached quality based healthcare to date.  There have been many times in discussions with patients when we discuss the factors in life contributing to their depression and/or anxiety that we recognize, it’s “life”, if we can’t address them, adapt the treatment plan to accommodate them then we must acknowledge and respect the factors.  I have told many patients, “I haven’t found the magic pill to fix life yet but when I do, I promise I will let you know” and until then we must work with our patients to support them and utilize our available resources within the clinic and the community.

Truly having the patient as an active member in their care involves incorporating the patient’s perspective so they can make meaningful choices regarding interactions between their illness and clinical interventions. In some cases, that choice is to forgo treatment – in some cases the motivating factor is the potential of adverse outcomes, a lack of adequate benefit identified by the patient to assume the burden, or general forms of scarcity that mean that the resources the patient must tap into in order to adhere are simply out of reach.  For example, patients may choose to forgo colon cancer screening via colonoscopy or the use of a statin medication for cardiac disease risk prevention for any of these reasons. Regardless of the health related decision – how will we train healthcare providers and patients to engage together in this level of care?  And how can we apply these principles of minimally disruptive medicine such that we can improve not only our quality of care but patient outcomes with the goal of person-centric, engaged healthcare that aims to carefully and kindly support people with chronic conditions and seeks to prevent the development of chronic disease for our population in the future.


Submitted by Summer Allen, M.D.

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.


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


  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.