Impact of an automated, remote monitoring and coaching intervention in reducing hospice cancer family caregiving burden: A multisite randomized controlled trial.

BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.

SymptomCare@Home: Developing an Integrated Symptom Monitoring and Management System for Outpatients Receiving Chemotherapy.

SymptomCare@Home, an integrated symptom monitoring and management system, was designed as part of randomized clinical trials to help patients with cancer who receive chemotherapy in ambulatory clinics and often experience significant symptoms at home. An iterative design process was informed by chronic disease management theory and features of assessment and clinical decision support systems used in other diseases. Key stakeholders participated in the design process: nurse scientists, clinical experts, bioinformatics experts, and computer programmers. Especially important was input from end users, patients, and nurse practitioners participating in a series of studies testing the system. The system includes both a patient and clinician interface and fully integrates two electronic subsystems: a telephone computer-linked interactive voice response system and a Web-based Decision Support-Symptom Management System. Key features include (1) daily symptom monitoring, (2) self-management coaching, (3) alerting, and (4) nurse practitioner follow-up. The nurse practitioner is distinctively positioned to provide assessment, education, support, and pharmacologic and nonpharmacologic interventions to intensify management of poorly controlled symptoms at home. SymptomCare@Home is a model for providing telehealth. The system facilitates using evidence-based guidelines as part of a comprehensive symptom management approach. The design process and system features can be applied to other diseases and conditions.

Automated monitoring of symptoms during ambulatory chemotherapy and oncology providers' use of the information: a randomized controlled clinical trial.

PURPOSE: Monitoring patient-reported symptoms is necessary to adjust and improve supportive care during chemotherapy. Continuing advances in computerized approaches to symptom monitoring can enhance communication about unrelieved symptoms between patients and oncology providers and may facilitate intensified symptom treatment. METHODS: An automated IT-based telephone monitoring system was developed to enable oncology providers to receive and act on alert reports from patients about unrelieved symptoms during chemotherapy treatment. Daily, 250 participants (randomized to treatment or attentional control) were asked to call the automated system to report presence, severity, and distress for common chemotherapy-related symptoms (1-10 scale if present). For the treatment group, symptoms exceeding preset thresholds for moderate-to-severe intensity levels generated emailed alert reports to both the patient's oncologist and oncology nurse. RESULTS: Patients reported high satisfaction and ease of use of the automated system. Over 80 % of providers reported usefulness of the symptom alert reports. Ten monitored symptoms resulted in, on average, nine moderate-to-severe intensity alerts per patient over 45 study days. However, providers rarely contacted patients after receiving alerts. There were no significant differences in change of symptom severity between the two groups (mean difference = 0.06, p = 0.58). CONCLUSION: Despite patients' use of a daily symptom monitoring system and providers' receipt of information about unrelieved symptoms of moderate-to-severe intensity, oncology physicians and nurses did not contact patients to intensify symptom treatment nor did symptoms improve. Further research is indicated to determine if oncology providers initiated follow-up to intensify symptom treatment, whether symptom outcomes would improve.

Acute home-based care for patients with cancer to avoid, substitute, and follow emergency department visits: a conceptual framework using Porter's Five Forces.

Background: Patients with cancer constitute a large and increasing segment of patients who receive unscheduled hospital-based care due to treatment-related symptoms and disease progression. The initial hospital-based touchpoint for these unscheduled hospitalizations is often the emergency department. Traditional models of emergency department and inpatient hospital-based care are saturated and incapable of scaling to accommodate the future, increased needs projected for this population. New models of care are necessary to address this gap. Acute home-based care is a promising tool potentially providing patient-centric, efficient care to eligible patients. Methods: We applied Porter's Five Forces framework that addresses the bargaining power of buyers and suppliers, threat of substitutes and new entrants, and industry rivalries plus the sixth force of regulation to clarify the factors that will promote or challenge the adoption of a home-based cancer care referral model before or following emergency department visits. Exploring this framework provides insights into the complexities of scaling an acute home-based cancer care model and highlights ways for health systems including hospitals, emergency departments, physician groups, and individual emergency physicians and oncologists to optimize their roles in this emerging model of care. Results: We found that current workforce shortages, as well as workflow, infrastructure, and regulatory complexities, pose major challenges that unless carefully addressed may restrict the growth of acute home-based cancer care. Additional uncertainties persist around appropriate payment models and the competitive landscape. Key promoting factors include the recognized need in the cancer community and among payers for new models to decrease unscheduled hospitalizations and emergency department visits as well as the uptake of home-based and technology-enabled solutions during the COVID-19 pandemic. A better understanding of these forces helps to clarify the risks and opportunities as new entrants build their programs. Conclusions: Acute home-based cancer care is a promising tool to complement traditional outpatient clinics, emergency departments, and inpatient hospital-based models of cancer care. New technologies and policies increasingly enable a broader scope of cancer care in the home setting.

Automated home monitoring and management of patient-reported symptoms during chemotherapy: results of the symptom care at home RCT.

Technology-aided remote interventions for poorly controlled symptoms may improve cancer symptom outcomes. In a randomized controlled trial, the efficacy of an automated symptom management system was tested to determine if it reduced chemotherapy-related symptoms. Prospectively, 358 patients beginning chemotherapy were randomized to the Symptom Care at Home (SCH) intervention (n = 180) or enhanced usual care (UC) (n = 178). Participants called the automated monitoring system daily reporting severity of 11 symptoms. SCH participants received automated self-management coaching and nurse practitioner (NP) telephone follow-up for poorly controlled symptoms. NPs used a guideline-based decision support system. Primary endpoints were symptom severity across all symptoms, and the number of severe, moderate, mild, and no symptom days. A secondary endpoint was individual symptom severity. Mixed effects linear modeling and negative binominal regressions were used to compare SCH with UC. SCH participants had significantly less symptom severity across all symptoms (P < 0.001). On average, the relative symptom burden reduction for SCH participants was 3.59 severity points (P < 0.001), roughly 43% of UC. With a very rapid treatment benefit, SCH participants had significant reductions in severe (67% less) and moderate (39% less) symptom days compared with UC (both P < 0.001). All individual symptoms, except diarrhea, were significantly lower for SCH participants (P < 0.05). Symptom Care at Home dramatically improved symptom outcomes. These results demonstrate that symptoms can be improved through automated home monitoring and follow-up to intensify care for poorly controlled symptoms.

Telephone-linked care for cancer symptom monitoring: a pilot study.

PURPOSE: The purpose of this pilot project was to explore the feasibility of using a telephone-based computerized system to monitor postchemotherapy symptoms and to test the mechanism of generating alert communications to healthcare providers about symptoms that are poorly controlled. DESCRIPTION OF STUDY: Twenty-seven patients with cancer participated in the study by calling the telephone-linked care (TLC) system daily during a single cycle of chemotherapy and reporting on seven common chemotherapy-related symptoms. Using selected symptom data, symptoms that met a preset threshold for severity generated a fax notification of the patient's symptom pattern to the physician. Patients then were interviewed about their satisfaction with TLC and about suggestions for improvement. RESULTS: The study demonstrated that TLC is easy to learn and use and that it captures daily symptom information from patients in their homes. A majority of patients experienced symptoms that were severe enough to generate symptom-alert faxes. Patient satisfaction with TLC was high. The technique, TLC voice, and the duration of the calls were acceptable to patients. There were few technical problems. CLINICAL IMPLICATIONS: The TLC system has the potential to improve dramatically symptom monitoring and symptom care of patients with cancer at home. Further testing is needed, but the TLC chemotherapy monitoring application shows promise for improving supportive-care service delivery for cancer patients. In its initial test, the TLC chemotherapy monitoring application has been shown to be highly acceptable to patients, able to generate useful symptom data, and able to generate faxed alerts to healthcare providers, thus improving communication about poorly controlled symptoms.