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Cancer Patients Unfamiliar With Clinical Practice Guidelines, Clinical Pathways

Results of a recent survey of the cancer care experience revealed barriers to navigating cancer care, including high costs and lack of information about how treatment decisions are made.
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Navigating cancer care is increasingly challenging for patients and caregivers in the current era of health care reimbursement, coverage reform, and escalating health care costs. Patient access to comprehensive, quality cancer care is in need of an updated assessment, especially with the many payment and care models being utilized today.

Maria Belen Gonzalo, manager of policy and advocacy, Cancer Support Community (Washington, DC), and colleagues conducted an online research survey project to explore the cancer patient experience as it relates to accessing health care and living with a new, evolving system of care. A total of 1218 adult patients who survived cancer answered survey questions pertaining to access to insurance, services, and providers as well as direct and indirect costs of care. The survey was conducted between June and August of 2016.

Survey results showed that 78% of patients with cancer either have not or do not recall discussing costs with their health care team prior to treatment. Approximately 54% of participants reported not knowing the meaning of the term “clinical practice guidelines” and 73% of participants had never heard the term “clinical pathway.”

A total of 25% of patients experienced delays in accessing cancer care, 18% reported that costs inhibited them from filling prescription drugs to treat their cancer, 22% chose not to obtain some of the health care services they needed due to out-of-pocket costs, and 53% reported not receiving social or emotional support.

Researchers concluded that despite continual progress toward expanding access to health care, there is still much improvement to be made in alleviating barriers and challenges to accessing cancer care.

“To create a system where all patients have access to high-quality and comprehensive cancer care, educational efforts are needed to enhance patient understanding of information about practice guidelines and payment policies, including information regarding health risk and benefits, costs, patient health, and quality-of-life outcomes,” they said.

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