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Incorporating Patient Experience, Financial Toxicity Into Clinical Pathways

October 27, 2018

Alan Balch, PhD, chief executive officer, National Patient Advocate Foundation, discussed the need to consider clinical pathways in helping differentiate options based on financial and logistical side effects that impact the patients’ care journey.

The discussion was held at the Clinical Pathways Congress (October 27, 2018; Boston, MA).

Dr Balch began his presentation by stating that we need to begin thinking about pathways beyond what drugs to administer to patients. There is a crucial need to incorporate patient experience and financial toxicity as fundamental pillars of pathways, much in the way that side effects have been included.

Incorporating key variables that impact patient lives in meaningful ways that are considered “indirect” or “outside the scope” of health care are the gateway to addressing pathway adherence barriers, Dr Balch added. Among the most prevalent variables for pathway inclusion include clinical benefits, side effects, total cost of clinical care for an episode, key costs related to the receipt of care not covered within insurance design, transportation requirement and burden, impact of treatment on job performance, time off work, and genomic profile. Dr. Balch opted to focus on the two variables most important for pathway inclusion: transportation and employment burden.

One of the top case management issues at the Patient Advocate Foundation in 2017 was assistance with transportation expenses. Approximately 20% of patients in the Foundation reported round trip travel of 2-4 hours for their medical appointments, and 40% of patients reported being “usually” to “always” overwhelmed by the time and effort necessary to receive their treatment. Transportation is more than just a distance issue, Dr Balch stated, referencing only 30% of patients that attributed difficulty of traveling to and from appointments to challenges of distance.

In a financial toxicity survey conducted by the Foundation of 568 patients with a cancer diagnosis and 269 patients with HIV/AIDS, patients reported overwhelming and severe financial hardship. Health care costs related to treatment that contributed most to their hardship included office visits to specialists, oral medication, radiology services, lab testing services, and loss of income related to work. In the 12 months prior to the survey, respondents acknowledged financial hardship lead to cutting of non-critical household expenses, cutting of critical household expenses, use of credit card and loans, and sold assets, among other impacts.


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Additionally, patients reported having to dip into savings to pay for medical visits, paying medical bills instead of monthly expenses, and consideration of financial costs of taking time off work for medical care.

An additional safety net survey was administered to patients who received Patient Advocate Foundation assistance from July 2016 through June 2017. Dr Balch showed that some 50% of respondents had a disruption of employment related to their illness (ie, loss of job due to illness and loss of income due to inability to work full time). These figures helped Dr Balch explain that financial toxicity is not only about the money being taken out of patient pockets for expenses, but also the money that is no longer in their pockets in the first place because of employment-related disturbances.

In his concluding remarks, Dr Balch reiterated that transportation requirements and burdens as well as presenteeism and absenteeism are the variables for pathway inclusion most important to address moving forward.—Zachary Bessette

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