CancerCare, NY, NY
Ellen Miller-Sonet, Gabrielle Betty Rocque
Background: The National Academies of Medicine prioritizes patient’s needs, values, and preferences when patient’s and care teams make treatment decisions. However, the collection of this patient information is not part of the formal clinical intake process, nor are pertinent questions included in EHR templates. Methods: Surveys were conducted of cancer patients and cancer physicians to understand perceptions on whether patients’ quality of life priorities (e.g work, hobbies, key events, household responsibilities) are discussed, documented and reflected in treatment plans. Physicians were recruited via a market research panel. Patients were recruited from the CancerCare data base via an email request to complete an online survey. Results: From February to October, 2018, 310 cancer patients and 109 cancer physicians completed surveys. Cancer patients were mostly female, 91% had been diagnosed in the last year, 61% had breast cancer, and 55% were stage 1 or 2. Among physicians, 88% self-identified as trained in oncology, 33% practice at academic centers, 51% in community practices, 34% from the Northeast, 21% the Southeast, and 25% the Midwest. Most patients (62%) said it was very/extremely important their doctor know their priorities. Most physicians (66%) report they most of the time/always know patients’ personal quality of life priorities before finalizing treatment plans, and 62% say this information has a large/major impact on recommendations. However, only 40% of patients report having this conversation before treatment started. Although 76% of doctors said they discussed what is important to patients most of the time or always, only 60% report it is documented, usually in the social history or notes fields. Only 36% of patients are sure this information is entered into their medical record. Conclusions: Cancer patients want their doctors to know what is important to them, and physicians agree. However, documentation is often relegated to narrative notes fields in the EHR. Considering the key role patients’ priorities should play in treatment planning, there need to be standardized collection tools so this information can be timely collected and shared.
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