R01NR019639

Characterizing the Complexity of Advanced Cancer Pain in the Home Context by Leveraging Smart Health Technology - Project Summary

Cancer pain is complex, prevalent, and has serious consequences for patients, family caregivers, and healthcare systems. Inadequately managed cancer pain can be particularly problematic for patients coping with advanced, metastatic disease. Most symptom management occurs in the home setting, and family caregivers often play a key role in helping to manage cancer pain. However, they often find this task daunting and stressful.

Complicating cancer pain management is the reality that opioids, a mainstay class of medications used to control serious cancer pain, are subject to increased scrutiny given well-publicized concerns about the national 'opioid epidemic.' Now more than ever, it is imperative we understand how patients and family caregivers attempt to manage cancer pain at home so we can offer them personalized support to effectively and safely alleviate pain.

Mobile and wireless technology ('smart health') can help support symptom management in the home setting but must be carefully designed to account for the realities of patients and family caregivers coping with advanced disease. We hypothesize that individuals, and patient-family caregiver dyads, will display a unique 'digital fingerprint' (or phenotype) of the advanced cancer pain experience – that if better understood can be utilized to inform and deliver personalized, timely interventions.

The purpose of this study, which builds upon preliminary pilot work, is to deploy an unobtrusive smart health system, the Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C), to monitor and describe – and ultimately to predict and help manage – the experience of advanced cancer pain in the home setting. BESI-C is comprised of wearable (smartwatch) and environmental sensors that collect physiological, behavioral, and contextual data at the individual, dyad, and home level that can be integrated to provide a comprehensive picture of a health-related phenomenon.

A unique feature of the BESI-C system is the ability of patients and caregivers to record and characterize cancer pain events from their own perspective using a custom application on their respective smartwatch. Specifically, this observational research will analyze data collected via BESI-C from patient-family caregiver dyads recruited from an outpatient oncology palliative care clinic and a home hospice program, to develop comprehensive 'digital phenotypes' of advanced cancer pain in the home setting. These digital phenotypes will characterize the frequency, intensity, and impact on quality of life of pain events; monitor the use of pharmacological and non-pharmacological strategies and self-reported effectiveness; correlate environmental, contextual, behavioral, and physiological sensor data with reported pain events; and evaluate concordance of patient and caregiver data.

This research will also explore preferences for communicating collected data with patients, family caregivers, and healthcare providers by creating and sharing data visualizations. Additionally, we will explore which sensing data are most predictive of breakthrough pain events to build parsimonious pain prediction algorithms.

Rector & Visitors Of The University Of Virginia

NURSES UNDERSTAND THAT IMPROVING HEALTH AND WELL-BEING MEANS ADDRESSING PEOPLE'S NEEDS IN MULTIPLE SETTINGS, CONTEXTS, AND OVER THE WHOLE LIFE COURSE. SCIENCE SUPPORTED BY THE NATIONAL INSTITUTE OF NURSING RESEARCH (NINR) USES THIS HOLISTIC PERSPECTIVE TO IMPROVE INDIVIDUAL AND POPULATION HEALTH AND ADVANCE HEALTH EQUITY. NINR-SUPPORTED RESEARCH PROMOTES HEALTH AND WELL-BEING BY ADDRESSING NEEDS AT MULTIPLE LEVELS INDIVIDUAL, FAMILY, COMMUNITY, AND SOCIETAL LEVELS AND DEVELOPING TREATMENT AND PREVENTION STRATEGIES THAT ARE RESPONSIVE TO THE REALITY OF PEOPLE'S LIVES. NURSES KNOW PEOPLE, AND PEOPLE TRUST NURSES. PATIENT AND FAMILIES INTERACT WITH NURSES MORE THAN ANY OTHER CLINICIANS. NURSING SCIENCE USES THIS SPECIAL RELATIONSHIP TO BETTER UNDERSTAND PATIENTS, FAMILIES, AND COMMUNITIES AND THE MANY FACTORS THAT INFLUENCE THEIR HEALTH. NURSING SCIENCE SUPPORTED BY NINR USES THIS KNOWLEDGE TO DEVELOP STRATEGIES FOR IMPROVING HEALTH AND WELLNESS ACROSS POPULATIONS, HEALTH CARE SETTINGS, AND THE LIFESPAN, WITH AN EMPHASIS ON ACHIEVING HEALTH EQUITY. NINR-SUPPORTED SCIENTISTS HAVE DEVELOPED INTERVENTIONS FOR: SUPPORTING PARENTS OF PREMATURE INFANTS, PROMOTING HIV PREVENTION IN UNDERSERVED POPULATIONS, IMPROVING TRANSITIONAL CARE LEADING TO BETTER OUTCOMES AND COST-SAVINGS, AND HELPING INNER-CITY CHILDREN MANAGE ASTHMA. NURSING SCIENCE TRANSCENDS THE BOUNDARIES OF DISEASE AND RESEARCH DISCIPLINES TO BETTER UNDERSTAND THE EXPERIENCES OF INDIVIDUALS AND FAMILIES LIVING WITH ILLNESS AND TO DEVELOP PERSONALIZED APPROACHES THAT MAXIMIZE HEALTH AND WELL-BEING FOR INDIVIDUALS AT ALL STAGES OF LIFE, ACROSS DIVERSE POPULATIONS AND SETTINGS. NINR-SUPPORTED SCIENCE USES NURSING SCIENCE'S UNIQUE, PATIENT AND COMMUNITY-FOCUSED PERSPECTIVE AND WIDE REACH ACROSS CLINICAL AND COMMUNITY SETTINGS TO ADVANCE OUR UNDERSTANDING OF THE SOCIAL DETERMINANTS OF HEALTH: THOSE FACTORS THAT ARE AT THE ROOT OF THE INEQUITIES THAT WE SEE, SUCH AS FOOD INSECURITY AND ACCESS TO HEALTHCARE. NINR RESEARCH EFFORTS IN WELLNESS INVESTIGATE THE KEY BIOLOGICAL, BEHAVIORAL, AND SOCIAL FACTORS THAT PROMOTE LONG-TERM HEALTH AND HEALTHY BEHAVIORS AND PREVENT THE DEVELOPMENT OF ILLNESS ACROSS HEALTH CONDITIONS, SETTINGS, AND THE LIFESPAN. RESEARCH IN WELLNESS IS ALSO FOCUSED ON DEVELOPING AND TESTING CULTURALLY APPROPRIATE INTERVENTIONS TO PROMOTE HEALTH AND PREVENT ILLNESS IN MINORITY AND UNDERSERVED GROUPS. NINR ALSO SUPPORTS SCIENCE TO ASSIST INDIVIDUALS, FAMILIES, AND HEALTH CARE PROFESSIONALS IN MANAGING ADVANCED, SERIOUS ILLNESS, AND PLANNING FOR END-OF-LIFE DECISIONS. IN ADDITION, NINR PROMOTES TECHNOLOGICAL ADVANCEMENTS THAT ADDRESS A RANGE OF HEALTH CARE CHALLENGES AND FACILITATE THE DELIVERY OF REAL-TIME PERSONALIZED INFORMATION TO INDIVIDUALS AND FAMILIES, HEALTH CARE PROVIDERS, AND COMMUNITIES. FINALLY, NINR HAS A LONGSTANDING AND CONTINUING COMMITMENT TO DEVELOPING THE NEXT GENERATION OF NURSE SCIENTISTS: THOSE INDIVIDUALS AND TEAM MEMBERS WHO WILL CARRY THE FIELD OF NURSING SCIENCE INTO THE FUTURE. IN ORDER TO PREPARE AN INNOVATIVE, DIVERSE, AND TALENTED NEXT GENERATION OF NURSE SCIENTISTS, NINR SUPPORTS A VARIETY OF TRAINING OPPORTUNITIES FOR SCIENTISTS AND TRAINEES AT ALL CAREER LEVELS, PARTICULARLY THOSE AT AN EARLY CAREER STAGE WHO ARE SO CRITICAL TO SUSTAINING THE FUTURE OF INNOVATIVE RESEARCH AND HIGH QUALITY HEALTH CARE.

93.361 - Nursing Research

National Institute of Nursing Research (NINR) [HHS - NIH]

Virginia United States

State-Wide

End-of-Life and Palliative Care Approaches to Advanced Signs and Symptoms (R01 Clinical Trial Optional) (PAR-19-045)

Amendment Since initial award the total obligations have increased 386% from $704,346 to $3,419,796.