Results from feasibility and acceptability testing of Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C): A smart health sensing system to support patients and family caregivers in managing cancer pain. (Preprint)

Abstract

BACKGROUND Distressing cancer pain remains a serious symptom management issue for patients and family caregivers, especially in the home setting. Technology can support home-based cancer symptom management but must consider the experience of both patients and family caregivers, as well as the broader environmental context. OBJECTIVE To test feasibility and acceptability of a smart health sensing system, Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C), designed to monitor, and ultimately support management of, cancer pain in the home setting. METHODS Dyads of patients with cancer and their primary family caregivers were recruited from an outpatient palliative care clinic at an academic medical center in the Southeastern U.S. BESI-C was deployed in dyad homes for approximately two weeks each. Data were collected via: 1) environmental sensors that measure ambient noise, humidity, barometric pressure, light, and temperature; 2) Bluetooth beacons to help localize dyad position; and 3) smart watches worn by both patients and caregivers equipped with heartrate monitors, accelerometers, and a custom application to deliver ecological momentary assessments (EMAs). EMAs enabled dyads to record and characterize pain events from both their own and their partner’s perspective. Sensor data streams were integrated to describe and explore the context for cancer pain events. Feasibility was assessed technically (by scoring each deployment regarding fidelity of data capture across system components) and procedurally (e.g., deployment process, participant recruitment). Acceptability was assessed by post-deployment surveys and structured interviews with participants. RESULTS 5 deployments (n=10 participants; 5 dyads of patients and primary family caregivers) were completed, and a total of 283 unique pain events were recorded. Using our ‘BESI-C Performance Scoring Instrument’, the overall feasibility technical score for deployments was 86.4/100. Procedural feasibility challenges included: rural location of dyads; smart watch battery life and EMA reliability; and length of time required for deployment installation. Post-deployment acceptability Likert surveys (1, strongly disagree; 5, strongly agree), found dyads disagreed that BESI-C was a burden (1.7/5) or compromised their privacy (1.9/5) and agreed the system collected helpful information to better manage cancer pain (4.6/5). Participants also expressed interest in seeing their own individual data (4.4/5) and strongly agreed it is important that data collected by BESI-C are shared with their respective partner (4.8/5) and healthcare provider (4.8/5). Qualitative feedback from participants suggests BESI-C positively improved communication regarding pain management. Importantly, we demonstrated proof of concept that seriously ill patients and their caregivers will mark pain events in real time using a smart watch. CONCLUSIONS It is feasible to deploy BESI-C, and dyads find the system acceptable. Leveraging human-centered design and the collection of heterogenous environmental, physiological, and behavioral data, BESI-C offers an innovative approach to monitor cancer pain, mitigate escalation of pain and distress, and improve symptom management self-efficacy. Future work will: (shorter-term) 1) test BESI-C in a larger, more diverse sample; 2) continue to streamline system architecture; 3) deploy a no-contact, self-installation system in response to the COVID-19 pandemic and to enhance scalability; 4) explore how to best share data visualizations of collected data with key stakeholders; and 5) (longer-term) inform design of and deliver just-in-time personalized pain management interventions to patients and caregivers. CLINICALTRIAL n/a INTERNATIONAL REGISTERED REPORT RR2-10.2196/16178

Describing and visualizing the patient and caregiver experience of cancer pain in the home context using ecological momentary assessments

“…Data were collected from five (n = 5) patient-caregiver dyads (total 10 individual participants, 5 patients, 5 caregivers); demographic and sample details have been reported elsewhere. 26 Briefly, the majority of participants were between 55 and 74 years of age (8/10, 80%), female (6/10, 60%), living in a rural setting (8/10, 80%), and White (6/10; 60%). Three out of 5 (60%) patients were diagnosed with head and neck cancer; the others included colorectal (1/5, 20%) and lung (1/5, 20%) cancers.…”

“…Our results describe the experience of cancer pain in the home context, as experienced by both patients and family caregivers, and as captured by a unique RHMS. 26 A better understanding of the experience of breakthrough cancer pain (i.e., abrupt escalations of pain from baseline) is critical to develop personalized interventions, which are key to optimizing outcomes for both patients and family caregivers. 45 Specifically, our results provide insights about the timing and severity of cancer pain, individual and perceived partner distress levels, the impact of cancer pain on key quality of life metrics, and patterns of opioid use and its perceived effectiveness through a unique schema of on-demand and scheduled EMAs.…”

“…Data collection occurred between April 2019–December 2019 and procedures have been described in detail elsewhere. 26 Briefly, we recruited dyads of patients with advanced cancer and their primary family caregivers from the outpatient palliative care clinic of an academic cancer center in the Southeastern U.S. All patients had a history of difficult cancer pain, were prescribed short-acting opioids, and lived with a primary family (informal, unpaid; family defined broadly) caregiver who also agreed to participate. Participants used the BESI-C system in their home for approximately 2 weeks and were asked to record cancer-related pain events on their respective smartwatch (e.g., patient asked to record a pain event if they were experiencing pain; caregivers asked to record a pain event if they perceived the patient was experiencing pain).…”

“…This paper presents findings from pain events recorded by patients with advanced cancer and their primary family caregivers while pilot testing the B ehavioral and E nvironmental S ensing and I ntervention for C ancer (BESI-C) RHMS. Our user-centered design process, 24 overall study protocol, rationale for selected system variables, and system architecture, 25 and feasibility and acceptability results 26 have been described in detail elsewhere. Briefly, BESI-C is a RHMS deployed in the homes of patients with advanced cancer to help understand contextual factors that influence pain and distress for both patients and family caregivers.…”

Deploying the Behavioral and Environmental Sensing and Intervention for Cancer Smart Health System to Support Patients and Family Caregivers in Managing Pain: Feasibility and Acceptability Study

“…During this hiatus, we pivoted and completely redesigned our system to be contactless and allow for self-installation. This was a significant undertaking, from both the clinical and engineering sides of the project, but has resulted in a more scalable, streamlined system architecture (the “BESI Box” [ 72 ]) for future deployments ( Figure 4 ). The “BESI Box” allows us to ship or drop off the system at participant homes and they can set it up themselves with remote support as needed.…”