Understanding the Experience of Cancer Pain From the Perspective of Patients and Family Caregivers to Inform Design of an In-Home Smart Health System: Multimethod Approach

Abstract

Background Inadequately managed pain is a serious problem for patients with cancer and those who care for them. Smart health systems can help with remote symptom monitoring and management, but they must be designed with meaningful end-user input. Objective This study aims to understand the experience of managing cancer pain at home from the perspective of both patients and family caregivers to inform design of the Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C) smart health system. Methods This was a descriptive pilot study using a multimethod approach. Dyads of patients with cancer and difficult pain and their primary family caregivers were recruited from an outpatient oncology clinic. The participant interviews consisted of (1) open-ended questions to explore the overall experience of cancer pain at home, (2) ranking of variables on a Likert-type scale (0, no impact; 5, most impact) that may influence cancer pain at home, and (3) feedback regarding BESI-C system prototypes. Qualitative data were analyzed using a descriptive approach to identity patterns and key themes. Quantitative data were analyzed using SPSS; basic descriptive statistics and independent sample t tests were run. Results Our sample (n=22; 10 patient-caregiver dyads and 2 patients) uniformly described the experience of managing cancer pain at home as stressful and difficult. Key themes included (1) unpredictability of pain episodes; (2) impact of pain on daily life, especially the negative impact on sleep, activity, and social interactions; and (3) concerns regarding medications. Overall, taking pain medication was rated as the category with the highest impact on a patient’s pain (=4.79), followed by the categories of wellness (=3.60; sleep quality and quantity, physical activity, mood and oral intake) and interaction (=2.69; busyness of home, social or interpersonal interactions, physical closeness or proximity to others, and emotional closeness and connection to others). The category related to environmental factors (temperature, humidity, noise, and light) was rated with the lowest overall impact (=2.51). Patients and family caregivers expressed receptivity to the concept of BESI-C and reported a preference for using a wearable sensor (smart watch) to capture data related to the abrupt onset of difficult cancer pain. Conclusions Smart health systems to support cancer pain management should (1) account for the experience of both the patient and the caregiver, (2) prioritize passive monitoring of physiological and environmental variables to reduce burden, and (3) include functionality that can monitor and track medication intake and efficacy; wellness variables, such as sleep quality and quantity, physical activity, mood, and oral intake; and levels of social interaction and engagement. Systems must consider privacy and data sharing concerns and incorporate feasible strategies to capture and characterize rapid-onset symptoms.

Challenges and Opportunities in Designing and Deploying Remote Health Monitoring Technology for Older Adults With Cancer

“…The specifics of these design processes vary, but typically involve end-user surveys and interviews combined with beta-testing. We found structured interviews with patients and caregivers, combined with input from clinical partners, essential in validating the design features of system components, as well as confirming which variables to measure with BESI-C ( 24 ) . Additionally, because nurses are particularly attuned to the patient experience, they can offer important insights into features of RHM systems that may be unnecessary, unduly burdensome, or simply inappropriate.…”

“…It is also not intended to be a technical summary regarding specific computing and engineering aspects of RHM (although many such excellent articles exist [ 5 , 23 )). When applicable, examples are provided from my research with the Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C) ( 15 , 24 ) RHM system. Because of the reality that within each challenge lie opportunities, and within each opportunity lie related challenges, each topic is presented with a discussion of both related challenges and opportunities and instances of where these intersect.…”

Effectiveness of caregiver interventions for people with cancer and non-cancer-related chronic pain: a systematic review and meta-analysis

“…No other disease groups have been previously examined. While cancer and musculoskeletal chronic pain populations share similar symptoms in pain, there are marked differences around health beliefs to movement, [51][52][53] disease progression, 53,54 prognosis 55 and fatigue. 53 Psychologically, while both populations may present with depression and anxiety, the basis of these in relation to ongoing healthcare status may differ.…”

“…In those with cancer-related pain, caregivers frequently experience high levels of emotional distress as they support individuals who they are close to and who are at the end of their lives, often with unplanned health care utilisation or emergency department visits which can increase stress and anxiety. 54,55 Through these differences between cancer and non-cancer associated pain management, further study is warranted to explore the role of caregiver interventions for people with musculoskeletal diseases.…”

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

“…Our research has a particular focus on supporting the pain management needs of patients with advanced cancer and their family caregivers in rural settings, a population with well-documented disparities and challenges related to symptom management [24][25][26][27]. The overall research protocol [28] and user-centered design process [29] for BESI-C have been reported in detail elsewhere. Briefly, BESI-C is an end-to-end sensing system that consists of (1) physical components (smart watches, environmental sensors, and localization beacons) deployed in patient homes to gather physiological, behavioral, and contextual data regarding pain events from the perspective of both patients and family caregivers and (2) an approach for data analytics (Figure 1).…”