Project ENABLE (Educate, Nurture, Advise, Before Life Ends)
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 higher quality of life and lower rates of depression and (caregiver) burden.
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
as well as Turkey
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
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. 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 were tailored to meet a
patient's and family's unique needs.
ENABLE-CORNERSTONE (2017-present) is a pilot RCT with 60
underserved rural or African American advanced cancer
family caregivers in the South to assess the lay
ENABLE-EPIC (Early Palliative Care in COPD)
(2018-present), funded by the Agency for Healthcare
Research and Quality (AHRQ) and a University of Alabama
at Birmingham Palliative Research Enhancement Award, is a
series of pilot trials to translate and test ENABLE for a
population with chronic obstructive pulmonary disease
ENABLE V (2018-2023), an NCI-funded implementation trial,
will compare the effectiveness of VLC versus technical
assistance on ENABLE program uptake as measured by the
proportion of patients at 48 participating NCI Community
Oncology Research Programs (NCORP) practices across the
country. The long-term goal is to generate knowledge
about ways to improve the adoption, adaptation,
integration, and scalability of evidence-based practices
and to improve the integration of ENABLE in oncology
practices to reduce disparities for patients.
Nurse coaches provide a comprehensive palliative care
assessment and 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.
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
A higher percentage of ENABLE
family members reported that the patient and providers
worked to ensure that patient preferences for medical
treatment were followed.
Intervention patients reported lower depressed mood
and higher quality of life, with trends toward improved
symptom management and survival.
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
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.
A National Institute for Nursing
Research-funded full-scale efficacy RCT enrolled 415
patients and 159 caregiver participants across the Deep
South. Over 50% of participants in the trial were African
60 caregivers have been
The completed formative evaluation study involved
pulmonary and palliative care clinicians and 10 COPD
The completed pilot trial demonstrated feasibility
An RCT is planned.
For more information about Project ENABLE:
Iyer, A.S., Dionne-Odom, J.N., Ford, S.M., Crump Tims,
S.L., Sockwell, E.D., Ivankova, N.V., ... & Bakitas, M.A.
(2019). A Formative Evaluation of Patient and Family
Caregiver Perspectives on Early Palliative Care in
Chronic Obstructive Pulmonary Disease across Disease
Severity. Annals of the American Thoracic Society,
Bakitas, M.A. (2017). On the Road Less Traveled: Journey
of an Oncology Palliative Care Researcher. Oncology
Nursing Forum, 44(1), 87-95.
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.
Bakitas, M., Stevens, M., Ahles, T., 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
Three Settings. Journal of Palliative Medicine,
Patient barriers include poverty and unemployment, level
of education, mistrust of healthcare, travel to care, and
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.
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
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
Hospice and palliative care
National/Multi-State, Alabama, New Hampshire, Vermont
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