Cumulative Burden: The real barrier to adherence for complex patients?

May 14th, 2013 by DCPatient Leave a reply »

Cumulative Burden: The real barrier to adherence for complex patients?

Or Confessions of an Engaged Patient

Recently I participated in an excellent meeting whose primary theme was patient adherence. ( Patient Summit USA 2013  ) Thankfully the other speakers, whether they were from pharmaceutical companies or solution providers had all moved beyond the notion that “patients forget to take their medication” and that adherence can be solved by fancy pill caps or bottles; yet I was struck after many small group conversations that we had not yet gotten to the point of where we appreciate the total adherence picture for a patient, particularly those on multiple therapies, possibly for multiple conditions and the fact that adherence to an integrated lifestyle of disease management, not just to taking medication is a necessary predicate for successful health outcomes.

I had even more time to think about this after a few days in the hospital last week due, not to non-adherence to my prescriptions (of which I only had two for much of the past few years), but to non-adherence to an integrated, multi-factoral lifestyle plan (there wasn’t one) and resulting unsustainable deterioration of health.

Mind you, the usual suspects of non-adherence — literacy, numeracy, health literacy, language, “patient activation” are not issues here.  The true culprits in my case, and for many other patients juggling serious health conditions with full lives, were communication, time, focus, discipline, ability to outsource tasks (money, support network), physical accessibility (travel-friendly habits and tools), and fatigue (physical and mental) from the sheer number and diversity of health tasks my conditions necessitate – cumulative patient burden.

Here is a list of what I am doing so as to avoid another overnight stay in my friendly neighborhood academic medical center.  Note: I have active Crohn’s Disease and am post- liver transplant.

 Must do (daily):

  • Take  1 prednisone (before 9am)
  • Take  3 prograf (2 times/day)
  • Take iron (3 times/day) figure out most absorbable form – liquid, liquid cap
  • Drink at least 80 oz of fluid, the majority of which in the form of osmotically appropriate (Gatorade, Ensure clear) drinks, not just water since I have no colon and thus absorption issues
  • (1)Shop for, (2)plan, (3)prepare and (4) eat 4-6 small meals which include cooked vegetables, specific bulk producing fruits, low fiber, low/no dairy, low fat, medium protein (ok I get my groceries delivered, but figuring out what to eat and finding time to cook and eat are still challenges, particularly when I am travelling)
  • Record symptoms in mobile app (8-10 times per day) otherwise we have no real basis to ascertain if any of this is working

Must do (non-daily):

  • Schedule appointments for bloodwork (I often avoid this by walking in to a nearby Labcorp)
  • Travel to appointments for bloodwork
  • Schedule appointments for arenesp shots
  • Refill and schedule delivery of Humira pens (new)
  • Be home to receive shipment of Humira which needs to be iced (new)
  • Take Humira on schedule (“luckily” having gone through IVF, subcutaneous injections are not a problem)

Important to do: (you might say these are must do as well, and I agree, but if I had to triage . . .)

  • Take multivitamin
  • Take calcium
  • Take fish oil
  • Take vitamin D3
  • Take B-vitamin
  • Take Zinc
  • Take Magnesium
  • Drink powered fiber mixed in water
  • Schedule follow up appointments with doctors (primary care, GI, transplant, immunology, dermatology, orthopedics, hematology)
  • Prepare for and travel to appointments with doctors
  • Get additional tests and procedures – (1) schedule (2) prepare (3) travel (4) participate
  • Colonoscopy (1-2/year)
  • Pap (1-2/year, follow up for abnormal)
  • Mammogram
  • Dexa
  • X-rays or other imaging (variable, usually 2-3/year of some sort)

Nice to do:

  • Exercise (BMI of 20 and I take the stairs, so don’t judge)

Life must dos:

  • Work
  • Spouse
  • Friends
  • Family
  • Pets
  • Sleep
  • Personal maintenance
  • House ( I believe a clutter-free environment leads to peace and productivity)

Nice to dos (admittedly seldom dones):

  • Anything fun that needs planning on my part

Sometimes some of the important to dos and even the must-dos don’t get done because doing them all starts to feel like my life and not something to do to facilitate my life. Too much focus on the disease becomes unsustainable after time (what I can do for a week, month, or 6 months, is not usually the same as what I can psychologically sustain over 30 years (since by initial IBD diagnosis).  Also, I have to be pretty healthy to accomplish all of these things, creating an unvirtuous cycle when I am tired. Joy-giving activities form my identity as a person, not just a patient, and in that capacity supports my health as well – they give adherence a point.

My thoughts on solutions?

Note: this is not about education, this is about coordination, process and strategy

  1. Physician communication –with each other, rather than passing me from place to place and looking at me organ by organ or problem by problem. Act as a true, if virtual, medical team.
  2. Physician communication – with me. Clearly my doctors were not listening or paying close enough attention to how quickly I was declining and the toll the symptoms were taking on me in the appointments I had in the past 2 months. Were there additional pieces of information or ways to articulate my symptoms that I could have given them?  We lacked clarity in establishing what an appropriate baseline for wellness was for me and what would trigger action.
  3. Share data – I am a one woman HIE. Even with doctors in the same institution there are gaps in the exchange of data from outpatient offices, inpatient, and imaging.  There seems to be no alerts or analytics applied.  (Why did I have to raise my hand and proactively seek out hematology when my hemoglobin dropped to 8.3?)  Reports from external physicians and my condition-specific mobile app are difficult to integrate into the workflow for consideration.
  4. Integrated lifestyle plan – Note I do not say treatment plan. I had to put the plan above together myself and I doubt that my doctors will give it much more than a nod.  I do need them to sign off.  It would have been great to have had more involvement from them collectively in developing it.
  5. More frequent micro-interventions –I would have benefited from a bag of IV fluid from time to time to avoid major, kidney-threatening dehydration later, or some IV iron and keep me fortified to keep up with the other health maintenance tasks.  I would like to see more of an emphasis on optimizing my health rather than just putting out fires.
  6. Streamline appointment process and number of appointments – Think of each of the things that I have to do, then add multiple attempts to do them. I would love for multiple appointments and procedures to be bundled and scheduled on the same day.
  7. Travel versions of everything – Taking this show on the road is my biggest challenge, so I have been stocking up on non-ecofriendly bottled and  juice box size versions of therapeutic fluids and stashed them in purses and suitcases and I will work on eating.

So I was taking the meds I was prescribed as prescribed and still ended up in the hospital.  Patient adherence discussions that are limited to blister pack containers for one product in pill form or swipes at patients who are not 100% adherent to a drug regimen “even when they have a serious or life threatening condition” are woefully insufficient in understanding, let alone addressing, the true barriers to adherence – patient-physician interactions, polypharmacy with differential timing or conditions, and cumulative patient burden.

See  also Non-compliance and minimally disruptive medicine expert Victor Montori, MD, Mayo  Clinic NonCompliance by Victor Montori, MD

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  1. Thank you, Donna! This is a ‘must-read’ for patients and any physician who treats patients living with chronic illness. Hope you are feeling much better and on the mend by now.

    I’m glad you mentioned Dr. Victor Montori and his Mayo Clinic-based team working on the concept of Minimally Disruptive Medicine. This work deserves wider attention, but in an arena of over-diagnosis and over-treatment as docs practice defensive medicine, our health care teams need to practice smarter, not more medicine. Your example: “I would have benefited from a bag of IV fluid from time to time” is such a smart intervention: low-cost, minimally invasive, a small investment in time that would have paid big benefits towards your overall health – if only one of your doctors would have thought of it. But if they are unaware of what your overall LIFE is like outside of your doctors’ visits, they won’t. I wrote recently on this in “News Flash: Patients Do Better When Doctors Consider The Whole Person” –

    Adherence (only slightly less annoying than the cringe-worthy word ‘compliance’) is so NOT about “fancy pill caps or bottles” as might be believed if you hang around long enough with the Silicon Valley health tech startups we met at Medicine X last fall.

    Yet until we get your important message out, health care professionals and the vast industry churning out adherence aids, self-tracking apps and useless discharge material will continue to be ignorant about what all chronic patients already know.

  2. Thank you for taking the time to share, Donna!
    Rare it is to see in such practical detail “a Day in the Life” (humbly, I might put a sense of hours necessary to schedule and coordinate appointments.) You’ve put in perspective tasks and vigilance required.
    IMO, often left out of the equation of the make-up of an Engaged Patient is that a) it often takes a lot of energy to be Engaged and b) energy often has to be carefully managed.
    But back to ‘Compliance, Adherence’ or any other loathsome label: even those (like me) who have few and well managed issues, and those who are Engaged, there are issues with meds that – as you’ve both pointed out go beyond reminders.
    I’ve been collecting seemingly straightforward instructions that are often not understood or misunderstood to the point of medication error.

    Carolyn, thanks for the Medicine X heads up
    Donna: kudos 😉 may the force be with you.

  3. Frame this for those who over-simplify the life challenges of complex patients. Thanks, Donna!

  4. Terrific post Donna.

    The innovators need to hear from patients like you more often. I do think they usually underestimate what it really takes for a person to manage medical complexity.

    I’ve been wondering how often they use medically complex people in their user testing…

  5. Howdy just wanted to give you a quick heads up and let you know a few of the pictures aren’t loading properlyon your site. I’m not sure why but I think it’s a linking issue. I’ve tried it in two different web browsers and both show the same outcome. I still enjoyed your post on Cumulative Burden: The real barrier to adherence for complex patients? | DCPatient though!