Burden of treatment: the work of being a patient

By Tran V-T.

 A patient with type 2 diabetes could spend a little over two hours a day on average following all doctors’ recommendations [1].

About 45% of the population has at least one chronic condition. In addition to the burden of illness, patients are affected by the burden of treatment, defined as the impact of the “work of being a patient” on functioning and well-being. This work includes medication management, self-monitoring, visits to the doctor, laboratory tests, lifestyle changes, etc. Coping with all these healthcare tasks requires a significant amount of time, effort, and cognitive work from patients and caregivers.

We performed a multinational study to better understand the burden of treatment from the patient’s point of view [2]. A total of 1,053 participants in 34 different countries answered a series of open-ended questions about what doctors’ recommendations they found difficult to follow and why and how they adapted their everyday life to their treatments.

Patients expressed how healthcare tasks imposed on them by the healthcare system, such as arranging doctors appointments and filling out paperwork, affects their daily lives,“Being sick also adds a lot of extra tasks, paperwork and appointments. To keep myself healthy, I miss out on a lot of things that people my age take for granted – working fulltime, cooking, showering every day, going out to socialize” (25-year-old woman with Ehlers-Danlos Syndrome from the United Kingdom). We classified these tasks as 1) managing medications, 2) lifestyle changes, 3) condition and treatment follow-up, 4) paperwork tasks, and 5) learning about the condition and treatment (e.g., medication management, lifestyle changes, follow-up, etc.).

Second, we identified the factors that aggravated the burden of treatment. They were both structural factors (e.g., medication is not available at the pharmacy, access to test results, lack of coordination between care providers, wait lines, lack of parking space, etc.) and personal factors (patients’ beliefs about their conditions and treatment and difficulties they could have in their interactions with others). For example: “Trips to hospital at least every three months (are) burdensome because of distance and also parking charges. Annual reviews are difficult because there are multiple investigations required and these take place over multiple different appointments and sometimes at different hospitals in the same group.”(55-year-old woman with diabetes and a cardiac condition from the United Kingdom).

Finally, patients reported consequences of the burden of treatment, which could lead to poor adherence to treatments, financial burden, impact on professional, family and social life. For example:There is stuff that I am SUPPOSED to do, and stuff that I actually DO.  If I did everything I am SUPPOSED to do, my life would revolve around doctors and tests and such and there wouldn’t be very much left for living my life.  So I’ve made a bunch of choices (with the input of my family and friends, because it’s important for me to have their support).”(46-year-old woman with a mitochondrial disease from the United States).

To our knowledge, this is the first study to provide a comprehensive view of the components and consequences of the burden of treatment across multiple countries, settings and treatment context. Our findings fit the Cumulative Complexity Model [3] in that the burden of treatment perceived by patients is a complex phenomenon resulting from the combination of 1) the workload of healthcare imposed on patients; 2) patients’ capacities to integrate this workload of healthcare in their daily lives in terms of energy, time, money or support; and 3) the context, especially the structure of healthcare and social support from their families, relatives, and friends.

Our findings have several implications. First, our results may help clinicians better understand and identify patients who are overwhelmed by their treatments. In a previous study, we have shown that physicians fail to assess the burden of treatment of their patients [4], partly because it expresses a patient experience that is not shared in depth during consultations [5]. Second, healthcare should be integrated and coherent: every therapeutic intervention imposed on patients should be carefully weighed in terms of clinical benefit, interaction with other treatments, possible harms, and potential burdens. Such consideration could result in the prioritization of tasks and a net reduction in healthcare tasks imposed on patients. Third, this study highlights the need to change the paradigm of care for patients with chronic conditions and end fractured care focused on individual conditions. Treatment objectives should not be based solely on attaining specific goals in specific diseases but also on mitigating the impact of conditions and treatments on patients’ professional, family and social lives, for minimally disruptive medicine.

This preliminary work opens the door for more studies about the burden of treatment. As of today, researchers have only considered the burden of treatment for individual patients. I strongly believe that capacities of the patients’ families play a significant role in how patients can cope with the burden of treatment. In a future work, we would like to investigate this area.

IGroupe2n addition, our research has highlighted several aggravating factors of the burden of treatment (especially structural and personal factors) which could be targets for intervention to reduce the burden of treatment and improve patients’ quality of life.

Burden of Treatment decision aid

References

  1. Russell, L.B., D.C. Suh, and M.A. Safford, Time requirements for diabetes self-management: too much for many? J Fam Pract, 2005. 54(1): p. 52-6.
  2. Tran, V.T., et al., Taxonomy of the burden of treatment: a multicountry Web-based qualitative study of patients with chronic conditions. BMC Med, 2015. 13: p. 115.
  3. Shippee, N.D., et al., Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol, 2012. 65(10): p. 1041-51.
  4. Tran, V.T., et al., Development and description of measurement properties of an instrument to assess Treatment Burden among patients with multiple chronic conditions. BMC Med, 2012. 10: p. 68.
  5. Bohlen, K., et al., 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. 35(1): p. 47-9.
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