Tag: treatment burden

MDM in practice, minimally disruptive medicine, Reflections on MDM, Research on MDM

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.

 

References

  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.

Reflections on MDM

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

Is healthcare careful? Is it kind?

January 24, 2015 By Filed Under: Doctoring, Health Care, Healthy Living

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.

Papers and presentations

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.

Reflections on MDM, Views from the frontline of care

Challenging my colleagues

By Victor Montori

I am often on the road discussing minimally disruptive medicine with colleagues elsewhere. For some reason I never hear disagreement with the basic statements of concern (we are responsible for some of the non adherence by virtue of our endless and uncoordinated demand for more work on chronically ill patients with multiple comorbidities). When I suggest something needs to be done about this, e.g., reject disease specific quality and performance measures, work for integrated care around patient needs, assess and reduce treatment burden, I get a sense of impotence, of inability to create change, to truly advocate for the patients’ interests. Why do you think this is the case?

When patients opt out of their medical care, we think it is because they may be ignorant about the implications of disease and the effects of treatment.  This intentional noncompliance sounds to me as a target for improved communication and education.  Even shared decision making.  If patients make informed choices about what to do and what not to do, that is not noncompliance.  That is informed patient choice.  An exercise of people’s values and preferences with full understanding of the opportunity costs of taking and not taking action in their specific context. This is sometimes confused, but some folks understand it – e.g. this article in LA Times.  The focus of my attention, however, is poor treatment fidelity – poor follow-through with an agreed upon plan of action.

Poor treatment fidelity can be caused by our transferring to patients the demands for optimal care we feel as part of misguided performance improvement campaigns, by poor care coordination, and by blindness to the burden of treatment and to the (limited or shrinking) capacity that patients and family have available or able to muster to implement treatments.  It is this reality that is within our reach and, as I indicated in the first paragraph, it is something about which I find professionals feeling impotent.  Why?

My colleague Barbara Koenig pointed me to this article by the late historian Tony Judt commenting on the work of Czeslaw Milosz and specifically on The Captive Mind.  The key phrase Judt offered that seems pertinent to this discussion is: “Above all, the thrall in which an ideology holds a people is best measured by their collective inability to imagine alternatives.”  Is the impotence I have observed the result of this inability to imagine alternatives?  Can minimally disruptive medicine offer these?