Making care fit in the lives of young adults with type 1 diabetes

Marleen Kunneman, Matthijs Graner, and Viet-Thi Tran

Even if care seems right from a medical perspective, if care doesn’t fit for each individual, we may ‘deliver care’ without actually ‘caring’. The recently published Making Care Fit Manifesto (1) states that for care to fit, care should be maximally responsive to patients’ unique situation and supportive to their priorities. Care should also be minimally disruptive to patients’ lives, loved ones, and social network. Making care fit requires patients (and their caregivers) and clinicians to collaborate, both in content and manner, and it is an ongoing and iterative process where care plans should continuously be evaluated and modified.

This is especially pertinent for young adults living with type 1 diabetes. Previous research showed that young adults with type 1 diabetes have relatively poor biomedical and psychosocial outcomes (2,3). For example, HbA1c levels are higher in younger adults compared to other age groups, and strikingly, they are also higher now than they were a decade ago (3).

At the same time, very little is known about what young adults do to implement diabetes care in their lives, and what price they have to pay in terms of negative effects on themselves and their surroundings. Also, how do we bridge what happens in their personal environment (‘point of life’) and what happens during clinical encounters (‘point of care’)? Because whatever is left undiscussed with their clinicians, is also left unconsidered when designing care plans.

We explored experiences of young adults with type 1 diabetes trying to make care fit into their lives. First, we asked 62 young adults with type 1 diabetes (Median age: 27, IQR 24 to 27, 80% women) from the French ‘Community of Patients for Research’ (ComPaRe) for their experiences with the burden of treatment. They reported a high burden4 of diabetes treatment (76.5 out of 150, IIQR 59 to 94). Importantly, 3 of every 4 young adults (74%) reported that their investment of time, energy, and efforts in healthcare is unsustainable over time. This is about twice as high as for other people with chronic conditions.

Second, the Dutch ééndiabetes foundation (for and by young adults with type 1 diabetes) asked its members for their experiences in making diabetes care fit into their lives. Nine of 25 young adults (36%) indicated that their diabetes care regularly or very often hinders their education, work, hobbies, leisure or social lives. When asked to describe their biggest efforts to fit diabetes care into their daily life, they responded:

“You want to live a fun and spontaneous life, but you have to nonstop keep an eye on your sugars.”

“Food. Everything you have to do then. That’s why I sometimes skip my meals.”

“Planning. Not just the hospital appointments and changing needles, but also planning with the energy I will or will not have.”

“Regulating hypo’s and then compensating for the time I couldn’t function well due to a hypo.”

“On time and constant planning ahead. What do I need? Do I have all my stuff before I leave? When do I have to place new orders to make sure I don’t run out?”

Additionally, we asked young adults what they do to fit diabetes care into their lives, but what they don’t discuss with their clinician. Some indicated they discuss “everything” or “nothing” with their clinician. Others said:

“I use a DIY loop. (I did tell my clinician but he wasn’t interested)”

“I delay my hospital appointments as long as I can.”

“I discuss everything about my diabetes with my clinician. All the better they can help me.”

“I bolus less to prevent hypos.”

Communication is key to bridge efforts of making care fit at the point of life and at the point of care. Our future work will focus on uncovering better ways to improve the quality of diabetes care through improving conversations. And to help young adults with their lifelong, daily and ongoing endeavor of making diabetes care fit.



  1. Kunneman M, Griffioen IPM, Labrie NHM, Kristiansen M, Montori VM, van Beusekom MM, Making Care Fit Working G. Making care fit manifesto. BMJ Evid Based Med. 2021.
  2. Johnson B, Elliott J, Scott A, Heller S, Eiser C. Medical and psychological outcomes for young adults with Type 1 diabetes: no improvement despite recent advances in diabetes care. Diabet Med. 2014;31(2):227-231.
  3. Redondo MJ, Libman I, Maahs DM, Lyons SK, SaracoM, Reusch J, Rodriguez H, DiMeglio LA. The Evolution of Hemoglobin A1c Targets for Youth With Type 1 Diabetes: Rationale and Supporting Evidence. Diabetes Care. 2021;44(2):301-312.
  4. Tran VT, Harrington M, Montori VM, Barnes C, Wicks P, Ravaud P. Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med. 2014;12:109.

Bringing health and health care issues to the forefront

Submitted by Madge Kaplan

Every now and then, as IHI’s Director of Communications and the host and producer of WIHI, I get the opportunity to bring forward issues health and health care improvers are particularly wrestling with. These are issues born of one of the hallmarks of quality improvement – innovation – but they can easily fall between the cracks and fall of schedules because sometimes the implementation requires a fundamental change in mindset and attitude among health care providers most of all. Victor Montori’s leading edge work on Shared Decision Making (SDM) and Minimally Disruptive Medicine (MDM), and the contributions from his team, fits into a tension we often come back to on WIHI: whether health care is serious about getting to know and respond to the needs and real lives and contexts and experiences of patients or pay lip service to the same while going about its own business.

I’m hopeful it’s the former. IHI’s “What Matters” initiative, which shares many of the same principles as MDM, is gaining traction; Don Berwick’s recent call for an Era Three for the health care quality improvement movement, has reminded many of the centrality of the provider/patient relationship that must be protected especially in the midst of health care transformation; and there are new concepts such as “co-production” that are helping to frame this brave new world of doing with patients rather than doing to them.

So, let’s be optimistic that the several hundred who tuned into the live broadcast of the January 28 WIHI with Dr. Montori, Kasey Boehmer, and Dave Paul from the KER Unit at Mayo, along with IHI’s Andrea Kabcenell, are going to think differently about the next discussions they have with patients with chronic conditions. It was also a treat to have Dr. Montori live in the WIHI studio, so much so we did some additional videotaping and produced these equally inspiring clipsLet’s keep the conversation going!


Madge Kaplan is the Director of Communications for the Institute for Healthcare Improvement.

Debriefing the NIH Training Institute for Dissemination and Implementation Research in Health: what can minimally disruptive medicine contribute?

By Aaron Leppin

Just last week I had the privilege of attending the NIH’ 5th annual Training Institute for the Dissemination and Implementation of Research in Health (hyperlink). The objective of this program is to train and develop a cohort of researchers with expertise in promoting and evaluating processes that translate evidence into practice.

Consonant with an MDM-based approach to care, the desire of implementation science is to ensure that the safest and most effective care is delivered to patients reliably. Traditionally, this field has focused its efforts on overcoming the underuse of evidence-based interventions. We now realize, however, that many interventions are implemented in practice that are of low or no value. What has become increasingly clear to me in my own research, however, is that many interventions become less effective and/or fail to achieve their full impact as a result of the way they are implemented. This idea, termed “mis-implementation,” is related to but distinct from the misuse of medical interventions.

In 2014, Prasad and Ioannidis outlined the evidence-based rationale for “de-implementing” contradicted, unproven, and aspiring healthcare practices (Imp Sci. 2014; 9:1) (hyperlink). This paper has been well received by the implementation science community, yet no clear and actionable guidance exists for practice-based efforts to de-implement interventions or, for that matter, to avoid mis-implementation entirely.

I am struck by the collective capacity of the MDM community to guide this emerging science. How does our expertise in evidence-based medicine, over-medicalization, and implementation science coalesce in this space? I have my ideas but am interested in others. What are examples of mis-implementation that you have experienced? How were you able (or unable) to overcome these challenges? How have you de-implemented ineffective interventions?

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.


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.

A Pragmatically Comprehensive Model for Delivering Care to Patients with Multiple Chronic Conditions

Patients with multiple chronic conditions must deal with complex circumstances and significant burdens of treatment and disease. Stakeholders at all levels are invested in finding innovative ways to effectively care for these patients. Here, Dr. Aaron Leppin and colleagues show how Minimally Disruptive Medicine can be operationalized to optimize care for these complex patients. This paper introduces the first conceptualization of a specific care delivery model built upon the theoretical precepts of MDM. (Leppin MDM Healthcare Paper)

Open access to medical records and reforms — Let’s hear from you!

This is open for debate. What are the patient workload and capacity implications of having access to the medical records?  Is it net benefit (as in more capacity due to better understanding and easier caregiving, lower cost/effort of accessing clarifying and helpful information) or net harm (as in docs using the record to communicate with patients rather than directly; records written in impenetrable jargon; access is through portals and other devices that patients negotiate via difficult and cumbersome protocols?).  What is your experience?

BMJ article

Maria Luisa’s Catch-22 and Minimally Disruptive Medicine (Photo essay)

In Joseph Heller’s classic novel Catch-22, the protagonist John Yossarian is a Captain in the Air Force during World War II. Yossarian does not want to fly any more missions as flying could be very dangerous. He reasons that any sane person would not want to fly, however, the only people who do not have to fly are those deemed insane and thus unfit to fly, the catch, the Catch-22, is that those who are insane and want to fly and thus can, but don’t have to, and those are sane don’t want to, but have to.1

Anyway, this story isn’t about an Air Force captain, this is the story of Maria Luisa, a woman stuck in the Catch-22 of health and illness; to live the life she wants to live she must manage her health, but managing her health prevents her from living the life she wants to live.

Maria Luisa, 87, a native of Peru, lives in the last frontier, Alaska. She has 3 children, 13 grandchildren and 12 great grandchildren. She has hypertension and, for the last 5 years, she has been on hemodialysis. Maria Luisa lives with her son, who is her caregiver and also a patient with chronic disease. Three times a week, she wakes up at 5:30 am, fixes some breakfast, and bundles up against the cold, which routinely reaches -10°C. Her son then drives her to the dialysis center at 6 a.m.

When she is not hooked up to the dialysis machine, she enjoys shopping (or window shopping), which also gives her a chance to be active. However, because of her health conditions she often gets short of breath which makes walking (and shopping) more difficult. To try and manage her medical conditions Maria Luisa takes 10 to 13 pills daily, to help organize her medications, Maria Luisa and her son, every Sunday, uses color-coded bottles to arrange her medications according to the day of the week and the time of day of each dose. In addition to this Maria Luisa tries to adhere to a diet that is low in salt, potassium, phosphorus, protein, and water. As a result of this she often copes with this limitation with dietary indiscretions that contribute to worsening of her health and to emergency department visits.

Organizing her medications, attending dialysis, scheduling doctors’ appointments, and adhering to her diet, while helpful to manage her chronic health conditions gives her lots of work; work that is disruptive to the life that Maria Luisa is trying to live in spite of her health conditions – a Catch-22.

Despite these difficulties Maria Luisa has resources she can mobilize to help her manage her health and the work and disruption illness causes. These resources include a loving, supportive family, a resilient personality, and financial resources. These resources are often helpful but, Maria Luisa faces a barrier that many patients face, as English is not her first language. This makes it more difficult for her to self-manage, makes her more isolated in a community with few Spanish speakers, and makes her more dependent on her caregiver, her son.  This barrier to communication has contributed to her difficulties managing her health; specifically she has had trouble communicating her difficulty following her diet.

How can we help Maria Luisa live the life she wants to live, maximizing health and happiness, while minimizing the work and disruption caused by illness? One approach that can help Maria Luisa is Minimally Disruptive Medicine.


Minimally Disruptive Medicine (MDM) is an approach to medicine that seeks to promote patient goals while right-sizing the work of being a patient to each patient context. MDM aims to manage the workload that the pursuit of health imposes upon people by examining that workload in the context of the patient’s life, their goals, and the capacity they have to implement that workload and thus, minimize the disruption medicine causes in a person’s life allowing them to live the life they want to live. 2

Using a MDM approach what can we do for Maria Luisa? How can we create a healthcare plan that fits for her? These are the questions I asked myself after another dietary indiscretion landed her once again hospitalized in the ICU.

Working with her family and healthcare team in Alaska we designed a plan that we thought would better fit Maria Luisa desires and available capacities.

We redesigned the way Maria Luisa organizes her medications, getting rid of the individual pill bottles and replacing them with two large pillboxes; one for her morning medications and one for her evening medications. This change made it easier and safer for Maria Luisa and her caregiver to organize her medications. In addition, Maria Luisa felt that this new system was easier to use and one that she could implement on her own, thus increasing her self-efficacy and leaving her happy and with a renewed feeling of independence.

In addition to reorganizing her medications, we also consulted with a Peruvian dietician to create a diet that not only was good for Maria Luisa, but also allowed her to enjoy eating once more, thus, reducing the chance of a deterioration in her health due to nonadherence to her prescribed diet. To further facilitate this change we mobilized some of Maria Luisa’s financial capacity and hired someone to help her prepare the food on her new diet.

Finally, in order to make her dialysis better fit into her life we arranged to have her dialysis completed at night rather than during the day. This not only allows Maria Luisa to do things she enjoys during the day, but, now she goes to dialysis at 5pm, gets out at 8pm and feels ready to go to bed. With this change Maria Luisa says she feels more rested and finds that her afternoons are more useful (she has started to knit again!) and her great granddaughters are more likely to visit because she is well rested and not exhausted from dialysis. An additional unexpected benefit is that some of the nurses who assist with dialysis in the evening also speak a bit of Spanish, thus giving Maria Luisa someone to talk to in her native language.

We might not have addressed all of Maria Luisa’s workload issues (ej. scheduling/attending appointments, physical activity) but I am sure that these simple changes have and will continue to make a big impact on her life.

I write about my experience with the hope that someday some young medical graduates (like me) will start thinking about “Maria Luisas” and ask themselves the same question I now cannot stop asking. How can we work with patients to co-create goals for care that respect each patients’ context, history, capacity and goals? Clinicians have met patients with similar stories, in similar catch-22s of illness, healthcare, and life. But this is not, for me, like any other story. This is the story of my abuela, who once again, has helped me find, in minimally disruptive medicine, a good answer.

Ana Castaneda-Guarderas MD @amcguarderas
Research Trainee, KER Unit
Unidad de Conocimiento y Evidencia (CONEVID)


Dr. Castaneda would like to thank Michael R. Gionfriddo Pharm.D for his editorial assistance.


1. Heller, Joseph. Catch-22.  Simon & Schuster, 1961. Print.
2. Leppin, A. Minimally Disruptive Medicine, at your service. URL: August 2013