Research Abstract

I am a Physician in the Breast Oncology Center in the Department of Medical Oncology at DFCI, an Associate Physician at BWH and Instructor in Medicine at HMS. My area of excellence is Clinical Expertise and Innovation.

Project Title: The COMPASSION Study: Applying Telehealth to Innovate and Strengthen Connections for Patients with Metastatic Breast Cancer Receiving Home Hospice Care

Background and Impact/Significance: Due to recent medical advances, patients with metastatic breast cancer (MBC) are living longer and often have longstanding, cherished relationships with their oncology providers. Once a transition to palliative care through hospice occurs, regular contact with care teams is variable. Care during this period is often uncoordinated and reactive. Transitions to hospice often induce anxiety and feelings of abandonment for patients and caregivers alike, and this may be exacerbated for those who have a high symptom burden. Patients worry that their oncologist will not be a part of their hospice care and often ask: ‘Will you still be my doctor/nurse if I go on hospice?’. Although the answer to this is a resounding ‘yes,’ the degree of clinician contact with patients and their loved ones varies, even when intentions are to remain in touch. Although data on patient perceptions during hospice are limited, a survey observed that 25% of patients/families perceived abandonment by their oncologist upon referral to hospice care, with these families more likely to report symptoms of complicated grief almost one year later. In addition, clinicians often feel a sense of loss if they cannot connect easily with patients, relying on hospice teams to contact them with concerns. Overall, there are limited data on patterns of oncology interactions with patients enrolled to hospice or how communication can be optimized. To our knowledge, no interventions have proposed viable solutions to these gaps in care and support. Such data have the potential to promote earlier, higher-quality transitions to hospice. Our study is designed to test a telehealth intervention to improve home hospice care for MBC patients.

Telehealth has emerged as a new opportunity to smooth transitions to hospice and improve the quality of end-of-life care. Since patients on hospice cannot typically leave their homes due to symptom burden and functional decline, telehealth could help ensure that care with oncology teams will not be disrupted, providing a unique, face-to-face interaction, closely simulating a home visit. Currently, most Americans have access to a smartphone or broadband internet at home regardless of age, race, ethnicity, or languages spoken, and all of these devices can be utilized for telehealth. We intend to implement four, weekly telehealth visits between patients with MBC, their designated caregiver, hospice nurse and DFCI oncology clinician after the transition to home hospice. We plan to utilize surveys to understand the effect of this intervention in comparison to a control group of ‘usual care’ MBC patients on home hospice.

Specific Aims and Hypotheses: The primary study aim is the feasibility of a telehealth intervention for patients with MBC transitioning to home hospice. The telehealth intervention consists of four, weekly telehealth visits conducted immediately after the transition to home hospice between the patient, caregiver, hospice nurse and DFCI clinician. Our secondary aim is to descriptively measure the effect of this intervention via surveys given to both a ‘usual care’ group of MBC patients transitioning to home hospice as well as the telehealth intervention group. We will comprehensively examine facilitators and barriers to implementation of telehealth visits, satisfaction with the care experience, communication, and symptom burden. All survey responses will be tabulated by participant type (e.g., patients, caregivers), with exploratory examination of responses by demographics including age and race. Due to the novel design of this multi-faceted, patient-centered pilot, we anticipate our results will be high-impact, directly demonstrating feasibility for this novel care delivery model, one that focuses on improving quality of life for patients during an emotionally and physically challenging time. Our preliminary data will support wider translation into practice beyond breast cancer, additional funding applications, and will serve as a basis for advocacy regarding telehealth.

Methods: Patients with MBC who are being transitioned to home hospice will be approached in person or by phone by a highly-trained clinical research coordinator. The usual care group will enroll 25 patients who will not do a telehealth intervention. This usual care group will complete a survey 4-6 weeks after enrollment, including a survey of the patient, caregiver, a DFCI clinician (MD or advanced practice provider), and hospice nurse. Once the first 25 patients enroll, we will enroll another 25 patients to the telehealth intervention, where patients are scheduled for four once-a-week telehealth visits that include the patient, a caregiver, a DFCI clinician, and a hospice nurse. The telehealth patients will complete a similar survey at 4-6 weeks, including a survey of the caregiver, DFCI provider and hospice nurse. A medical record review will be conducted for both cohorts of patients at 18 weeks. We will collect information on demographics, vital status, hospitalizations, intensive care unit admissions, place of death, and any discontinuation of hospice services. We will also explore the record for any communications that are documented with regard to phone calls and interactions with the hospice team and patient/caregiver during the 4-week time period to help inform whether the intervention, a more pro-active approach to care, lessened the need for reactive symptom management.

Outcomes/Analysis: Feasibility for the telehealth intervention will be defined as ≥80% of enrolled patients completing ≥66% of the planned telehealth visits, while the patient remains alive, for up to 4 weeks. We will measure the number of completed visits / the number of weeks the patient was active within home hospice (for up to 4 weeks). After enrollment, any patient who passes away within a week and did not have an opportunity to complete a single visit will be substituted with an additional patient. Surveys for patients will be conducted by phone or by email (REDCap survey link) per patient preference, while the remainder of surveys for caregivers, hospice nurses, and DFCI clinicians will be sent via email. The surveys for patients and caregivers are brief, 5-10 minutes, and are based upon the Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey designed by the Centers for Medicare & Medicaid to measure and assess the experiences of patients receiving hospice care, including symptom burden.9 In addition, the surveys will ask feedback on the telehealth intervention. Surveys for hospice nurses and DFCI clinicians will ask about time burden and general satisfaction with the pilot.