Contribution from Claudia Dobler, MD, PhD2018 U.S. GRADE Workshop Scholarship Recipient
Treatment burden is the work that patients need to do to implement treatments and its effect on patient functioning and well-being. The work that patients do to manage their health often remains invisible to health professionals, who might therefore overestimate patient’s capacity to take on more interventions. Treatment burden includes filling prescriptions, taking medications, attending medical appointments, monitoring their health, making lifestyle or behavioral changes, managing medical equipment or devices, and having to deal with insurance companies and the financial burden of health care. The evidence to decision framework developed by the GRADE Working Group addresses some parts of the construct of burden of treatment in the domains of acceptability and feasibility, but burden of treatment is currently not included as a discrete construct. The authors of this paper explore the idea of including information on treatment burden associated with interventions in clinical practice guidelines. Information on treatment burden would enable patients to make informed decisions about treatments. High-quality methods for assessing treatment burden need to be identified and meaningful ways of adding this information to clinical practice guidelines need to be explored. In the paper, practical examples are outlined of how treatment burden could be included in guidelines for chronic obstructive pulmonary disease, type 2 diabetes, and chronic kidney disease. Making treatment burden explicit for adhering to a special diet for chronic kidney disease, for example, could include information on foods that should be avoided, extra time spent on grocery shopping and cooking, challenges when eating out, the typical number of consultations with a dietitian, transport requirements to see a dietitian, time spent documenting the diet, and required intensity of blood tests to monitor electrolytes.
Clinicians should discuss values and preferences with patients, especially for treatments associated with a high workload. This would help clinicians to understand how individual patients prioritize different outcomes and treatment burden and would help patients to understand what components of their treatment are the essentials, even on a bad day, so that they can prioritize treatments appropriately.
Dobler CC, Harb N, Maguire CA, Armour CL, Coleman C, Murad MH. Treatment burden should be included in clinical practice guidelines. BMJ 2018: 363. https://www.bmj.com/content/363/bmj.k4065