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Cumulative Burden: The Real Barrier to Adherence for Complex Patients?

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Recently, I participated in an excellent meeting, (Patient Summit USA 2013), whose primary theme was patient adherence. Thankfully the other speakers 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 that most did not yet fully appreciate the challenges of a complete adherence picture, particularly for patients on multiple therapies. Adherence to an integrated lifestyle to manage disease, not just to taking medication, is necessary 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.

The culprits for me, 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

More Blog Posts by Donna Cryer

author bio

Donna Cryer, JD, is president and chief executive officer of the American Liver Foundation, and CEO of CryerHealth, a health care strategy firm in Washington, DC. A liver transplant recipient, Ms. Cryer has experienced frequent and varied interactions with the health care system, giving her a unique perspective on the patient experience. She blogs about patient advocacy issues on DCPatient – An Impatient Patient's Perspective on Health Care Today.


Tags for this article:
Patient Engagement   Participate in your Treatment   Lifestyle and Prevention   Inside Healthcare  


Comments on this post
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Debra Madden says
July 28, 2013 at 5:53 PM

Donna, bravo on writing about this critical issue. With eloquence and honesty, you poignantly address the many barriers that exist for so many patients with complex, serious illnesses and co-morbidities. This is a must read for any medical professional who cares for patients with complex medical histories and who are on multiple therapies. Though my challenges aren't nearly as difficult as they are for so many, I do have the life-time job of ensuring that my oncologist, my surgeons, my cardiologist, my endocrinologist, and my primary care provider all appropriately talk with one another whenever something changes w/my medical history, such as when I need to have a procedure done. Most recently, I had to have yet another thyroid biopsy secondary to the radiation I'd had for Hodgkin's lymphoma about 25 years ago, and I had to remind/coordinate w/my docs the need to stay on my aspirin, but to lower it to 81 mg--because of the coronary artery stents that I have, also secondary to the radiation. My biopsy was a repeat procedure, because during the first, I had significant internal bleeding, so the procedure had to be stopped. So in the scheme of things, my history is much less complex than so many, but it definitely means that I very much have to be my own advocate--as you stated so well--due to the lack of proper "coordination, process, and strategy" that's currently the reality. Donna, on a side note, it was wonderful to meet you during a recent PCORI Merit Review Panel! Take care, and I'll hope to see you at an upcoming meeting soon! ~Debra Madden

Blog: "Musings of a Cancer Research Advocate," www.draemadden.wordpress.com
Twitter: @Advocate DebM

Peter Phua says
March 1, 2014 at 12:37 AM

Outstanding post - it's so hard for providers to see this problem from the patient's perspective. I'm so glad I found this blog post!

This concept of "cumulative burden" holds so much explanatory power.