JMIR Publications

ABSTRACT

Background:

Inadequately managed pain is a serious problem for patients with cancer and those who care for them. Most cancer symptom management occurs at home where family caregivers play a key role in supporting patients but often have limited support. Smart health systems can help with remote symptom monitoring and management but must be designed with meaningful end-user input.

Objective:

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 mixed methods approach. Dyads of patients with cancer and difficult pain and their primary caregiver were recruited from an outpatient oncology clinic. 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) structured feedback regarding BESI-C system prototypes. Interviews were recorded and transcribed verbatim. Qualitative data were analyzed using a descriptive approach to identity patterns and key themes. Quantitative data were analyzed in SPSS; basic descriptive statistics and independent sample t-tests were run.

Results:

Patients and caregivers (n=22) 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 (x ̅ =4.79), followed by the category wellness, (x ̅ =3.60; sleep quality/quantity; physical activity; mood and oral intake) and interaction, (x ̅ =2.69, busyness of home; social/interpersonal interactions; physical closeness/proximity to others; emotional closeness/connection to others). The category related to environmental factors (temperature; humidity; noise; light/brightness) was rated with the lowest overall impact (x ̅ =2.51). Patients and family caregivers expressed receptivity to the concept of BESI-C and provided constructive feedback regarding system components. Participants 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 account for the experience of both the patient and the caregiver, prioritize passive monitoring of physiological and environmental variables to reduce burden, and include functionality that can monitor and track medication intake and efficacy, wellness variables, such as sleep quality/quantity, physical activity, mood and oral intake, and levels of social interaction and engagement. Systems must thoughtfully consider privacy and data sharing concerns and incorporate feasible strategies to capture and characterize rapid-onset symptoms.