As healthcare becomes more standardized, there has been a proliferation of measures to track population health and appraise healthcare delivery. These measures are often used to report on disease prevalence and healthcare quality as defined by clinical practice guidelines or metrics imposed by health insurance providers. However, one crucial aspect of healthcare has been largely absent in these surveys; the burden of the work that patients endure to access and use care and enact self-care. This work is often time-consuming and complex. It includes learning about healthcare problems and treatments; enrolling in health insurance plans and affording medical costs; and daily medication-taking and health behaviors. The work is amplified by unregulated medication pricing, and delegation of work and costs to patients because they have more “skin in the game”. Those who are not excluded from healthcare by prohibitive costs and demands may have to spend multiple hours weekly on healthcare. But, high-value, high-quality, just healthcare should result in improved health outcomes with the least possible burden to patients and their caregivers.
In our recent publication, Assessing the Burden of Treatment, published in the Journal of General Internal Medicine (http://rdcu.be/t7Rx), we describe how we can start making the work of being a patient visible and useful. We report on two available measures that can be used to assess the burden of treatment and healthcare for patients with any or multiple health conditions.[2, 3] These measures vary in their lengths, properties and domains. Uncovering the burden of treatment can be used to track and improve healthcare services at the clinician, institution and national level. Consider the case of Carlos, a 52-year-old male Puerto Rican patient with diabetes who after a decade with reasonable glycemic control presents to his primary care physician with elevated blood glucose levels. The doctor assumes this is part of the natural history of disease and adjusts the insulin dosing accordingly. After some conversation, however, Carlos shares that he recently saw a four-fold surge in insulin prices at his local pharmacy that makes paying for insulin impossible on his budget. He is therefore awaiting an informal shipment of affordable insulin from a neighboring Caribbean island. He feels frustrated and disappointed but sees no other recourse. Carlos has taken on emotional and existential work to accept the loss of access to a life-saving medication which he had integrated into his daily life for years. He has done the work of searching among family, friends and acquaintances for alternative insulin sources. Carlos’ HbA1c readings may not be as consistent anymore; he must await inconsistent shipments and ration doses to manage his insulin supply. Uncovering the work that Carlos is doing to care of his health creates the space for a practical and productive relationship with his clinician. She may offer strategies for assessing the integrity of the product and adjusting carbohydrate intake. She can also share the information with colleagues who may be caring for patients in similar situations. If treatment burden was assessed on a large scale, with standardized measures, policy-makers can respond with price regulation and government agencies can offer subsidies and emergency supplies.
Assessing the burden that healthcare imposes on patients and finding ways to reduce patient workload can support a transition towards more holistic and practical models of care. Minimally Disruptive Medicine (MDM) is one such model that acknowledges that patients have life goals and responsibilities and finite resources (materials, energy, time and attention) with which to accomplish them. Therefore, MDM seeks to create healthcare that aligns with and fits in patients’ lives and goals. Collecting and tracking national information on patient treatment burden would make the work that patients do to manage their chronic illness much more visible to policymakers and clinicians alike. Ultimately, knowing the burden patients bear and the constraints they are under will guide providers in the treatment recommendations they make and partnerships they forge with patients to support health and well-being.
How does your organization uncover and track the work that is delegated to patients? How could you use these tools in your setting? We welcome discussion and questions! Comment below or tweet us @vmontori and @gabrielamabel12.
- Spencer-Bonilla, G., et al., Assessing the Burden of Treatment. J Gen Intern Med, 2017.
- Eton, D.T., et al., Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden. Qual Life Res, 2017. 26(2): p. 489-503.
- Tran, V.T., et al., Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med, 2014. 12: p. 109.
- Boehmer, K.R., et al., Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis. BMC Fam Pract, 2016. 17: p. 127.
- May, C., V.M. Montori, and F.S. Mair, We need minimally disruptive medicine. BMJ, 2009. 339: p. b2803.
Submitted by Gabriela Spencer Bonilla, Ana Quinones, and Victor Montori.
Gabriela Spencer-Bonilla is a 4th year medical student at the University of Puerto Rico and Mayo Graduate School alumnus. She works with the KER unit to describe patient work in diabetes care with a mission of just and kind healthcare.
Ana Quiñones, PhD MS, is an Associate Professor of Family Medicine at Oregon Health & Science University (OHSU) with affiliate appointments in the OHSU-PSU School of Public Health, and the Portland Veterans Affairs (VA) Health Care System. She is a gerontologist trained in health services organization and policy from the University of Michigan’s School of Public Health. Her research interests address four main areas: (1) age-related changes in health, (2) racial and ethnic disparities in health, (2) co-existing chronic disease (multimorbidity), and (4) health care delivery changes designed to improve the management of chronic conditions for vulnerable older adults.
Throughout her training, she has aimed to understand disparities in health stemming from differential access to resources for disadvantaged populations and subsequent effects on health and wellbeing throughout the life course. In this stage of her career, her work focuses on the development of and intersection between multimorbidity and disability—and the role that specific multimorbidity combinations play in accelerating poor health outcomes among older adults.