Patients with cancer experience many unanticipated symptoms and struggle to communicate them to clinicians during treatment. They contend with a variety of symptoms at home—issues stemming from cancer progression, treatment regimens, and co-morbidities. Although many patients rely on clinic visits to get help with managing these symptoms, clinicians often underestimate the intensity of patients' symptoms or miss them altogether.
A proliferation of mobile and sensor-based tools, which enable self-tracking, leads us to consider how to approach their design to support cancer symptom management. However, tracking tools are not widely used and accepted in cancer care. To further study use of tracking tools, I analyzed the use of two different types of manual tracking tools: (1) ESRA-C2, an electronic Patient-Reported Outcome (ePRO) tool deployed to 372 people with cancer; and (2) HealthWeaver, a personal informatics tool deployed as a technology probe to 10 women with breast cancer. Also, I analyzed the “in-the-wild” self-tracking practices of the 10 women before they used HealthWeaver, as well as 15 other women with breast cancer. Results showed that patients who voluntarily used the ePRO tool the most frequently had relatively low symptom distress. In addition, although patients’ tracking behaviors “in the wild” were fragmented and sporadic, these behaviors with a personal informatics tool were more consistent. Participants also used tracked data to see patterns among symptoms, feel psychosocial comfort, and improve symptom communication with clinicians. Given these considerations, I describe a new conceptual model that has implications for patients, clinicians, and tool developers. If patients and clinicians accept and integrate tracking tools into cancer symptom management away from the clinic, we can move closer to continuous healing relationships that are the cornerstone of effective care.
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