Exposure to a patient-centered, Web-based intervention for managing cancer symptom and quality of life issues: impact on symptom distress.

BACKGROUND: Effective eHealth interventions can benefit a large number of patients with content intended to support self-care and management of both chronic and acute conditions. Even though usage statistics are easily logged in most eHealth interventions, usage or exposure has rarely been reported in trials, let alone studied in relationship to effectiveness. OBJECTIVE: The intent of the study was to evaluate use of a fully automated, Web-based program, the Electronic Self Report Assessment-Cancer (ESRA-C), and how delivery and total use of the intervention may have affected cancer symptom distress. METHODS: Patients at two cancer centers used ESRA-C to self-report symptom and quality of life (SxQOL) issues during therapy. Participants were randomized to ESRA-C assessment only (control) or the ESRA-C intervention delivered via the Internet to patients' homes or to a tablet at the clinic. The intervention enabled participants to self-monitor SxQOL and receive self-care education and customized coaching on how to report concerns to clinicians. Overall and voluntary intervention use were defined as having ≥2 exposures, and one non-prompted exposure to the intervention, respectively. Factors associated with intervention use were explored with Fisher's exact test. Propensity score matching was used to select a sample of control participants similar to intervention participants who used the intervention. Analysis of covariance (ANCOVA) was used to compare change in Symptom Distress Scale (SDS-15) scores from pre-treatment to end-of-study by groups in the matched sample. RESULTS: Radiation oncology participants used the intervention, overall and voluntarily, more than medical oncology and transplant participants. Participants who were working and had more than a high school education voluntarily used the intervention more. The SDS-15 score was reduced by an estimated 1.53 points (P=.01) in the intervention group users compared to the matched control group. CONCLUSIONS: The intended effects of a Web-based, patient-centered intervention on cancer symptom distress were modified by intervention use frequency. Clinical and personal demographics influenced voluntary use. TRIAL REGISTRATION: Clinicaltrials.gov NCT00852852; http://clinicaltrials.gov/ct2/show/NCT00852852 (Archived by WebCite at http://www.webcitation.org/6YwAfwWl7).

Probing the benefits of real-time tracking during cancer care.

People with cancer experience many unanticipated symptoms and struggle to communicate them to clinicians. Although researchers have developed patient-reported outcome (PRO) tools to address this problem, such tools capture retrospective data intended for clinicians to review. In contrast, real-time tracking tools with visible results for patients could improve health outcomes and communication with clinicians, while also enhancing patients' symptom management. To understand potential benefits of such tools, we studied the tracking behaviors of 25 women with breast cancer. We provided 10 of these participants with a real-time tracking tool that served as a "technology probe" to uncover behaviors and benefits from voluntary use. Our findings showed that while patients' tracking behaviors without a tool were fragmented and sporadic, these behaviors with a tool were more consistent. Participants also used tracked data to see patterns among symptoms, feel psychosocial comfort, and improve symptom communication with clinicians. We conclude with design implications for future real-time tracking tools.