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.

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)

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

Can adverse economic circumstances have a negative impact in the glycemic control of patients with diabetes?

Can adverse economic circumstances have a negative impact in the glycemic control of patients with diabetes? Mounting evidence suggests that this may be the case (1, 2). A recently published cross-sectional study identified food insecurity and cost-related medication underuse as unmet basic needs that were independently associated with poor diabetes control (1). Although associations between diabetes-related complications (e.g., lower extremity amputations or acute cardiovascular events) and specific material need insecurities were not investigated in this study, the data presented by Berkowitz and collaborators suggests that patients with diabetes struggling with financial burdens could be particularly vulnerable to this disease and may need a higher use of health care resources (1). Clearly, there are no simple solutions for these social problems that require the implementation of population-based strategies that go well beyond the scope and limits of public health. So, what can we do as clinicians? Certainly activism to end poverty, build prosperity, and advocate for universal health coverage would be welcomed. Also, we can recognize that the principles of minimally disruptive medicine offer opportunities that are particularly valuable in populations with limited financial capacity. Excessively demanding treatment plans in patients with diabetes and other associated chronic comorbidities – that include the use of multiple costly medications and unnecessarily investigations – can lead to the disruption of patients’ wellbeing, poor treatment adherence, and eventually the development of negative outcomes (3). In patients struggling with material need insecurities we should expect some limitations in their capacity, and therefore, it is in this group that health care should be the least disruptive as possible.

Oscar L. Morey-Vargas MD
Endocrinology, Diabetes, and Nutrition Fellow
Mayo Clinic, Rochester


  1. Berkowitz SA, Meigs JB, DeWalt D, Seligman HK, Barnard LS, Bright OM, Schow M, Atlas SJ, Wexler DJ. Material Need Insecurities, Control of Diabetes Mellitus, and Use of Health Care Resources: Results of the Measuring Economic Insecurity in Diabetes JAMA Intern Med. 2014 Dec 29. doi: 10.1001/jamainternmed.2014.6888.
  2. Ngo-Metzger Q, Sorkin DH, Billimek J, Greenfield S, Kaplan SH. The effects of financial pressures on adherence and glucose control among racial/ethnically diverse patients with diabetes. J Gen Intern Med. 2012;27(4):432-437.
  3. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009 Aug 11;339:b2803. doi: 10.1136/bmj.b2803.

REPOST: Is healthcare careful? Is it kind? by Dr. John Mandrola

Is healthcare careful? Is it kind?

Research now indicates 50% of middle–aged people live with one chronic disease. Translation: half of middle-aged people are not healthy.(You don’t need a reference there. Just walk out into the world and look around.)

This new normal creates a challenge for caregivers. How will we care for the onslaught of chronic disease?

Surely not with the current model of care. What happens now is that doctors treat diseases–and even “pre-diseases.” We once had diabetes and hypertension and heart failure. We now have pre-diabetes, pre-hypertension and Stage A (no symptoms and no findings) heart failure.

Guidelines statements promote disease-specific numeric measures, such as blood pressure, glucose and cholesterol levels. Patients not at goal get more medication. Then guidelines spawn quality measures, which intensifies already burdensome care. Hit doctors with sticks, feed them carrots, the result is the same: more pills and procedures.

Here is the problem: People are not diseases. Guidelines are context blind. As the burden of healthcare overcomes the capacity (physical, mental, emotional and financial) of the patient, she makes choices of what to do. Said another way: life gets in the way of healthcare. No one wants to spend their life being a patient.

Dr. Victor Montori (@vmontori) is an endocrinologist at Mayo Clinic. His idea for making healthcare more effective is to shun disease-specific context-blind surrogates. Montori and his team have asked us to consider a minimally disruptive approach to healthcare. Quality care in their model happens when patients improve their ability to function–or enjoy life.

Their two new words in healthcare are work and capacity. Minimally disruptive care seeks to decrease the work of care while increasing the capacity of the patient to do the work.

This is not health policy gibberish. Think about it. We are losing the fight against chronic disease. When something is not working, you change the strategy.

Montori’s suggestions are simple: 1) Start by using the right language.Assess the burden of care and think about the patient’s capacity to do all that we prescribe. 2) Guideline writers must add context, otherwise guidelines will become irrelevant. 3) Use shared-decision making. If you have to treat 140 patients with a statin medication to prevent one heart attack (meaning 139 patients take the drug without benefit), it makes sense to incorporate the patient’s goals. 4.) Think about deprescribing,not just in the elderly, but in relation to decreasing the work of healthcare.

Here is a 45-minute lecture Montori gave to a group of primary care doctors. About half-way through the video, he describes a patient named John. John is real life. And once you hear John’s story, it is impossible to think we are on the right path.

REPOST: Is Burden Of Treatment A Barometer Of Quality Of Care? from Carl May

Frances Mair and I have an Editorial in this week’s British Medical Journal that sets out some of the key problems around Burden of Treatment and multi-morbidity. That the BMJ should commission this editorial from us shows that the idea of Burden of Treatment is getting traction across the healthcare economy. And why shouldn’t it? The bug issue here is patient and carer workload – something that we know much less about than we should. The editorial comes hot on the heels of an important meeting sponsored jointly by the National Institute of Health Research and the Royal College of General Practitioners that sought to develop a strong research agenda on multi-morbidity. The key message that I took away from that meeting was that there was a real risk of turning multi-morbidity into a kind of new disease in itself – in the way that we often now hear chronic illness and long-term conditions spoken about in a quite undifferentiated way. In fact, the big problems here are at a system level, and they’re the problems that Frances and I discuss in our editorial. I was a plenary speaker at the RCGP NIHR Multimorbidity meeting and I’ve embedded my powerpoint presentation below.

Carl May’s blog

Multimorbidity, Burden of Treatment and Intervention Design from Carl May

Minimally disruptive medicine makes to a BS Medicine podcast!

The geniuses at the Therapeutic Education Collaboration, James McCormack and Michael Allan, had me on for their BS Medicine Podcast. They dedicated their SUPERLATIVE episode to minimally disruptive medicine. It was fun(ny) and we hope informative. They offer multiple ways to enjoy their podcasts, but the most direct one I can see is here.

Burden of treatment

One of the key aspects of minimally disruptive medicine is the need to become aware of the burden that our treatments cause on people’s lives. This concept, of burden of treatment, relates to the distress (including suffering, interruption, inconvenience) caused by treatment-associated demands for time, attention, and work.  We know very little about it, but our international team is working toward clarity in this area.

Some important studies have been recently published and I bring them here for your attention:

1: Eton DT, Ramalho de Oliveira D, Egginton JS, Ridgeway JL, Odell L, May CR, Montori VM. Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Meas. 2012;3:39-49. doi: 10.2147/PROM.S34681. Epub 2012 Aug 24. PubMed PMID: 23185121; PubMed Central PMCID: PMC3506008.

2: Tran VT, Montori VM, Eton DT, Baruch D, Falissard B, Ravaud P. Development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. BMC Med. 2012 Jul 4;10:68. doi: 10.1186/1741-7015-10-68. PubMed PMID: 22762722; PubMed Central PMCID: PMC3402984.

3: Jani B, Blane D, Browne S, Montori V, May C, Shippee N, Mair FS. Identifying treatment burden as an important concept for end of life care in those with advanced heart failure. Curr Opin Support Palliat Care. 2012 Nov 28. [Epub ahead of print] PubMed PMID: 23196381.

4: Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 2012 Oct;65(10):1041-51. doi: 10.1016/j.jclinepi.2012.05.005. Review. PubMed PMID: 22910536.

5: Gallacher K, May CR, Montori VM, Mair FS. Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory. Ann Fam Med. 2011 May-Jun;9(3):235-43. doi: 10.1370/afm.1249. PubMed PMID: 21555751; PubMed Central PMCID: PMC3090432.

6: Bohlen K, Scoville E, Shippee ND, May CR, Montori VM. 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 Jan;35(1):47-9. doi: 10.2337/dc11-1082. Epub 2011 Nov 18. PubMed PMID: 22100962; PubMed Central PMCID: PMC3241328.