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Project ENABLE (Educate, Nurture, Advise, Before Life Ends)

Summary 
  • Need: To enhance palliative care access to rural patients with advanced cancer or heart failure and their family caregivers.
  • Intervention: Project ENABLE consists of: 1) an initial in-person palliative care consultation with a specialty-trained provider and 2) a semi-structured series of weekly, phone-delivered, nurse-led coaching sessions designed to help patients and their caregivers enhance their problem-solving, symptom management, and coping skills.
  • Results: Patients and caregivers report lower rates of depression and burden along with higher quality of life.

Evidence-level

Evidence-Based (About evidence-level criteria)

Description

ENABLE CHF-PC logo Palliative care is often limited in resource-scarce rural communities. While palliative care has traditionally been offered only after exhausting curative treatment options, a growing number of clinical trials demonstrate that offering palliative care at the time of diagnosis and concurrent with disease-oriented care can help improve patients' symptoms, quality of life, and mood and help them and their caregivers plan for an unpredictable future.

Project ENABLE (Educate, Nurture, Advise, Before Life Ends) is a telehealth approach that provides palliative care to patients with serious illnesses and their family caregivers. ENABLE was developed in rural New Hampshire and Vermont and is now being implemented and tested in the southeastern United States and in selected areas of Honduras, Turkey, and Singapore.

History of Project ENABLE:

Project ENABLE I (1998-2001) was developed through a Robert Wood Johnson Foundation-funded demonstration project involving 380 patients at three northern New Hampshire cancer practices: the Norris Cotton Cancer Center (NCCC) at Dartmouth-Hitchcock Medical Center in rural Lebanon, Oncology Associates in Manchester, and a Critical Access Hospital in rural Berlin. The goals were to provide a supportive care intervention to patients who were newly diagnosed with advanced cancer and had limited access to palliative care.

A nurse coach met with patients to facilitate a 4-session seminar guided by the Charting Your Course guidebook, which helps patients and families better cope with their physical, functional, emotional, and spiritual needs. The nurse coach also coordinated care between the cancer centers and their communities. Family caregivers were invited but not required to attend. If they were interested but unable to attend in person, nurse coaches provided the content to patients and families over the phone.

ENABLE II (2003-2008) was a randomized controlled trial (RCT) funded by the National Cancer Institute (NCI). Building on ENABLE I, including adapting the in-person intervention to one delivered by phone, the study's aim was to evaluate the efficacy of ENABLE to improve quality of life, symptoms, and mood for patients with advanced cancer compared to standard care. Over 300 patients enrolled over 4 years: Half of the patients received ENABLE and half received usual cancer care. Family caregivers did not receive a specific intervention but were invited to participate in patients' in-person palliative care consultations.

ENABLE III (2010-2013), funded by the National Institute of Nursing Research (NINR), was an RCT examining the timing of providing ENABLE to patients and a parallel intervention for family caregivers. Patients and their caregivers were randomly assigned to receive the intervention immediately or 12 weeks after enrollment. The intervention included an in-person comprehensive assessment by a palliative care-certified clinician followed by nurse coach-delivered telehealth sessions. (Patients received 6 sessions and caregivers received 3 sessions.) The patient and caregiver each had a different nurse so that each participant could share questions or concerns freely. Nurses maintained monthly contact with patients and caregivers after the sessions were completed.

ENABLE IV (2012-2017), funded by the American Cancer Society, was an implementation science study using a virtual learning collaborative (VLC) approach to implement ENABLE at racially diverse, rural-serving community cancer centers in Alabama and South Carolina. ENABLE implementation teams at each site were supported by the University of Alabama at Birmingham Coordinating Center experts via monthly videoconferences and annual site visits. Site teams reported monthly progress, patient experience, implementation costs, and lessons learned.

ENABLE CHF-PC (Comprehensive Heartcare for Patients and Caregivers: 2010-present), funded by Dartmouth SYNERGY and the National Palliative Care Research Center Pilot awards, adapted ENABLE to also serve patients with heart failure and their family caregivers. A full-scale efficacy RCT is enrolling patients and caregiver participants across the Deep South. ENABLE CHF-PC combines an in-person palliative consultation by a palliative care specialist and weekly nurse coach telehealth sessions (6 for patients and 4 for caregivers) and monthly follow-up. The sessions also follow "Charting Your Course" and services are tailored to meet a patient's and family's unique needs.

Current efforts are focusing on tailoring this early palliative care approach further for cancer family caregivers (ENABLE-CORNERSTONE) and for patients with chronic obstructive pulmonary disease (COPD) and family caregivers (early palliative care for COPD-EPIC).

ENABLE Cancer Trials

Services offered

Nurse coaches provide Charting Your Course sessions for patients and caregivers. These sessions cover topics such as symptom management, self-care, decision-making, and advance care planning. While palliative care services are considered standardized, they can be tailored to meet the individual patient's and caregiver's needs.

Project ENABLE components

Results

ENABLE I:

  • Compared to national and regional data, a larger number of participants in ENABLE died in their preferred site. (For many participants, this meant dying in their own home.)
  • A higher percentage of ENABLE family members reported that the patient and providers worked to ensure that patient preferences for medical treatment were followed.

ENABLE II:

  • Intervention patients reported lower depressed mood and higher quality of life, with trends toward improved symptom management and survival.
  • ENABLE was listed as a Research-Tested Intervention Program (RTIP) by the National Cancer Institute.

ENABLE III:

  • Kaplan-Meier survival rates one year after enrollment were 63% for those in the early intervention group, compared to 48% for those who began intervention 3 months later.
  • Caregivers in the early intervention group had lower depression and stress burden scores.
  • The American Society for Clinical Oncology (ASCO) identified ENABLE as one of the year's greatest advances in clinical cancer care.
Survival rates graphic
Survival rates one year after enrollment were 63% for the early intervention group and 48% for the delayed intervention group. Reprinted with permission: American Society of Clinical Oncology; Journal of Clinical Oncology, 33(13), 1438-1445.

ENABLE IV:

  • Program coordinators developed and tested the ENABLE Implementation Toolkit to assess pre- and post-implementation success.
  • They demonstrated feasibility of using a VLC strategy to implement ENABLE in non-academic, community-based cancer practices that serve a high proportion of rural, minority cancer patients and their family caregivers.

ENABLE CHF-PC:

  • Results of a pilot study demonstrated feasibility of carrying out ENABLE with 61 patients and 48 caregivers in New England and the Southeast.
  • Patients and caregivers experienced moderate improvements in quality of life and mental health. Patients' symptoms and physical health as well as caregivers' burden improved.

For more information about Project ENABLE:

Bakitas, M.A. (2017). On the Road Less Traveled: Journey of an Oncology Palliative Care Researcher. Oncology Nursing Forum, 44(1), 87-95. Article Abstract

Bakitas, M.A., Elk, R., Astin, M., Ceronsky, L., Clifford, K.N., Dionne-Odom, J.N., ... & Smith, T. (2015). Systematic Review of Palliative Care in the Rural Setting. Cancer Control, 22(4), 450-464. Article Abstract

Bakitas, M.A., Tosteson, T.D., Li, Z., Lyons, K.D., Hull, J.G., Li, Z., ... & Ahles, T.A. (2015). Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial. Journal of Clinical Oncology, 33(13), 1438-1445.

Dionne-Odom, J.N., Azuero, A., Lyons, K.D., Hull, J.G., Tosteson, T., Li, Z., ... & Bakitas, M.A. (2015). Benefits of Early Versus Delayed Palliative Care to Informal Family Caregivers of Patients with Advanced Cancer: Outcomes from the ENABLE III Randomized Controlled Trial. Journal of Clinical Oncology, 33(13). 1446-1452.

Dionne-Odom, J.N., Kono, A., Frost, J., Jackson, L., Ellis, D., Ahmed, A., ... & Bakitas, M. (2014). Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers. Journal of Palliative Medicine, 17(9), 995-1004.

Bakitas, M., Lyons, K.D., Hegel, M.T., & Ahles, T. (2013). Oncologists' Perspectives on Concurrent Palliative Care in a National Cancer Institute-Designated Comprehensive Cancer Center. Palliative & Supportive Care, 11(5), 415-423. Article Abstract

Maloney, C., Lyons, K., Li, Z., Hegel, M., Ahles, T.A., & Bakitas, M. (2012). Patient Perspectives on Participation in the ENABLE II Randomized Controlled Trial of a Concurrent Oncology Palliative Care Intervention: Benefits and Burdens. Palliative Care, 27(4), 375-383.

O'Hara, R.E., Hull, J.G., Lyons, K.D., Bakitas, M., Hegel, M.T., Li, Z., & Ahles, T.A. (2010). Impact on Caregiver Burden of a Patient-Focused Palliative Care Intervention for Patients with Advanced Cancer. Palliative & Supportive Care, 8(4), 395-404.

Bakitas, M.A., Lyons, K., Hegel, M., Balan, S., Brokaw, F., Byock, I., ... & Ahles, T. (2009). Effects of a Palliative Care Intervention on Clinical Outcomes in Patients with Advanced Cancer: The Project ENABLE II Randomized Controlled Trial. Journal of the American Medical Association, 302(7), 741-749.

Bakitas, M., Stevens, M., Ahles, T.A., Kirn, M., Skalla, K., Kane, N., & Greenberg, E.R. (for Project ENABLE staff). (2004). Project ENABLE: A Palliative Care Demonstration Project for Advanced Cancer Patients in 3 Settings: One Project of the Robert Wood Johnson Foundation's "Promoting Excellence in End-of-Life Care." Journal of Palliative Medicine, 7(2), 363-372. Article Abstract

Barriers

Patient barriers include poverty and unemployment, level of education, mistrust of healthcare, travel to care, and insulated communities.

Provider barriers include lack of palliative care education, experience, and expertise.

Policy/system barriers include inability of small cancer centers and practices to support palliative care expertise and disincentives from limited reimbursement.

Replication

Implementation materials are available through RTIP and the authors' publications and presentations. Early lessons learned from the implementation study include:

  • The importance of administrative and palliative care leadership buy-in, support, and commitment
  • The need for oncologist champions
  • Protected time for coaches to deliver the program
  • The need for strategically incorporating ENABLE model elements into existing work-flow patterns
  • A referral trigger that does not rely solely on oncologist referral
ENABLE CHF-PC trial participant locations
Locations of ENABLE CHF-PC trial participants

Contact Information

Dr. Marie Bakitas, Professor and Marie L. O'Koren Endowed Chair / Associate Director
University of Alabama at Birmingham School of Nursing / UAB Center for Palliative and Supportive Care
UAB Center for Palliative and Supportive Care
205.934.5277
mbakitas@uab.edu

Topics
Cancer
Cardiovascular disease
Hospice and palliative care
Informal caregivers
Telehealth

States served
National/Multi-State, Alabama, New Hampshire, Vermont

Date added
May 19, 2017

Date updated or reviewed
September 14, 2018


Please contact the models and innovations contact directly for the most complete and current information about this program. Summaries of models and innovations are provided by RHIhub for your convenience. The programs described are not endorsed by RHIhub or by the Federal Office of Rural Health Policy. Each rural community should consider whether a particular project or approach is a good match for their community’s needs and capacity. While it is sometimes possible to adapt program components to match your resources, keep in mind that changes to the program design may impact results.