Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial

Bakitas, Marie; Dionne‐Odom, J. Nicholas; Pamboukian, Salpy V.; Tallaj, José; Kvale, Elizabeth; Swetz, Keith M.; Frost, Jennifer; Wells, Rachel; Azuero, Andres; Keebler, Konda; Akyar, İmatullah; Ejem, Deborah; Steinhauser, Karen E.; Smith, Tom E. C.; Durant, Raegan W.; Kono, Alan T.

doi:10.1186/s12904-017-0226-8

Cited by 57 publications

(106 citation statements)

References 55 publications

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“…2,10,11 In light of this, we developed a nurse-led palliative care intervention for family caregivers of persons with advanced heart failure called ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers), consisting of 4 weekly 20-to 60-minute manualized psychosocial and problem-solving support telephonic sessions facilitated by a registered nurse coach and a study team-developed Charting Your Course-Caregiver guidebook plus monthly follow-up for 48 weeks. After performing formative evaluation work to adapt the ENABLE caregiver intervention from cancer to heart failure and refine the intervention in 2 singlegroup pilot trials, 12,13 we performed a randomized clinical trial to test the effect of ENABLE CHF-PC compared with usual care. For our primary end points, we hypothesized that caregivers receiving the intervention would report better quality of life, improved mood (measured by anxiety and depressive symptoms), and decreased burden compared with usual care over 16 weeks.…”

Section: Introductionmentioning

confidence: 99%

Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure

et al. 2020

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IMPORTANCE Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life. OBJECTIVE To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks. DESIGN, SETTING, AND PARTICIPANTS This single-blind randomized clinical trial enrolled caregivers aged 18 years and older who self-identified as an unpaid close friend or family member who knew the patient well and who was involved with their day-today medical care. Participants were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veterans Affairs medical center from August 2016 to October 2018. INTERVENTION Four weekly psychosocial and problem-solving support telephonic sessions lasting between 20 and 60 minutes facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The usual care group received no additional intervention. MAIN OUTCOMES AND MEASURES The primary outcomes were quality of life (measured using the Bakas Caregiver Outcomes Scale), mood (anxiety and/or depressive symptoms measured using the Hospital Anxiety and Depression Scale), and burden (measured using the Montgomery-Borgatta Caregiver Burden scales) over 16 weeks. Secondary outcomes were global health (measured using the PROMIS Global Health instrument) and positive aspects of caregiving. RESULTS A total of 158 family caregivers were randomized, 82 to the intervention and 76 to usual care. The mean (SD) age was 57.9 (11.6) years, 135 (85.4%) were female, 82 (51.9%) were African American, and 103 (65.2%) were the patient's spouse or partner. At week 16, the mean (SE) Bakas Caregiver Outcomes Scale score was 66.9 (2.1) in the intervention group and 63.9 (1.7) in the usual care group; over 16 weeks, the mean (SE) Bakas Caregiver Outcomes Scale score improved 0.7 (1.7) points in the intervention group and 1.1 (1.6) points in the usual care group (difference, −0.4; 95% CI, −5.1 to 4.3; Cohen d = −0.03). At week 16, no relevant between-group differences were observed between the intervention and usual care groups for the Hospital Anxiety and Depression Scale anxiety measure (mean [SE] improvement from baseline, 0.

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Section: Introductionmentioning

confidence: 99%

Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure

et al. 2020

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“…An example is the ENABLE model (Educate, Nurture, Advise, Before Life Ends), which has demonstrated effectiveness for oncology and heart failure. ( 28 ) The intervention included an in‐person PC assessment and weekly telehealth coaching sessions with advanced‐practice nurses for 6 weeks and 4 weeks for caregivers on select topics such as problem‐solving, symptom management, communication, and decision‐making. The qualitative programmatic evaluation found that participants gained illness management and decision‐making skills while continuing with curative treatments, reported feeling empowered, and experienced better care planning.…”

Section: Structures and Processes Required For Integrating Nonhospicementioning

confidence: 99%

Nonhospice Palliative Care Within the Treatment of End‐Stage Liver Disease

2020

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Palliative care (PC) that has evolved from a focus on end-of-life care to an expanded form of holistic care at an early stage for patients with serious illnesses and their families is commonly referred to as nonhospice PC (or early PC). Patients with end-stage liver disease (ESLD) suffer from a high symptom burden and a deteriorated quality of life (QOL), with uncertain prognosis and limited treatment options. Caregivers of these patients also bear an emotional and physical burden similar to that of caregivers for patients with cancer. Despite the proven benefits of nonhospice PC for other serious illnesses and cancer, there are no evidence-based structures and processes to support its integration within the routine care of patients with ESLD and their caregivers. In this article, we review the current state of PC for ESLD and propose key structures and processes to integrate nonhospice PC within routine hepatology practice. Results found that PC is highly underutilized within ESLD care, and limited prospective studies are available to demonstrate methods to integrate PC within routine hepatology practices. Hepatology providers report lack of training to deliver PC along with no clear prognostic criteria on when to initiate PC. A well-informed model with key structures and processes for nonhospice PC integration would allow hepatology providers to improve clinical outcomes and QOL for patients with ESLD and reduce health care costs. Educating hepatology providers about PC principles and developing clear prognostic criteria for when and how to integrate PC on the basis of individual patient needs are the initial steps to inform the integration. The fields of nonhospice PC and hepatology have ample opportunities to partner clinically and academically. (Hepatology 2020;71:2149-2159). E nd-stage liver disease (ESLD) is the 12th leading cause of death and claims approximately 66,000 lives each year in the United States. (1) Between 2006 and 2016, the prevalence of ESLD increased by 7.9% among men 25-34 years of age and 11.4% among women in the same age group because of the increasing burden of nonalcoholic steatohepatitis, alcohol-associated liver disease, and advanced hepatitis C virus. (2) In parallel, mortality due to ESLD increased by 65% from 1999 to 2016. (3) ESLD is also associated with functional and cognitive impairment, often with concomitant mental health and substance use disorders. The physical and psychological symptom burden and social-role consequences of ESLD are often worse than those for many non-liver cancers. (4) The most frequently reported symptoms include pain, breathlessness, muscle cramps, sleep disturbance, fatigue, pruritus, anxiety, depression, and erectile dysfunction. (4) In addition to its direct effects on patients, ESLD is linked with a substantial caregiver emotional and physical burden, mirroring that observed in caregivers of patients with cancer. (5) However, interventions to improve the quality of life (QOL) for patients with ESLD and their caregivers are underdeveloped.Palliativ...

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“…9 Additional large-scale trials of the effect of PC interventions on patient and caregiver quality-of-life outcomes are now ongoing, and hopefully higherpowered data to support the PC-HF collaboration will be forthcoming. 10,11 Patients receiving MCS can experience high symptom burdens and have multifaceted advance care planning needs and complex end-of-life considerations that would benefit from ongoing PC-MCS collaboration. Patients with advanced illness often face a constellation of quality-of-life-limiting symptoms.…”

Section: Collaborative Care For the Duration Of Treatmentmentioning

confidence: 99%

Palliative Care for Patients on Mechanical Circulatory Support

Wordingham¹,

McIlvennan

2019

AMA Journal of Ethics

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Palliative care (PC) teams are primed to support patients with advanced illness, including patients with mechanical circulatory support (MCS), and are increasingly being called upon to help care for these patients. Detailed guidelines for PC engagement are lacking despite key stakeholders' endorsements of collaboration. PC needs to encompass the decision-making period, the duration of therapy, and end-of-life care. PC teams can assist with symptom management, advance care planning, and communication across the continuum of MCS care. However, the current state of MCS and PC collaboration is variable and can be hindered by staffing challenges and clinician discomfort. To best care for patients who receive advanced cardiopulmonary life-sustaining therapies, meaningful engagement of PC during all phases of MCS is essential. Need for Palliative Care Partnerships Mechanical circulatory support (MCS) is increasingly being used to support patients with advanced heart failure. 1 In many tertiary hospitals, once foreign devices are now common, including left ventricular assist devices (LVAD), extracorporeal membrane oxygenation (ECMO), and total artificial hearts. 1 Initially developed and used as a bridge to other treatment options such as transplantation, advanced heart failure therapies now support patients with diverse goals of care and for variable periods of time, ranging from hours to years. For patients who ultimately progress to end of life with their device in situ or suffer from complications, issues concerning quality of life, mortality, psychosocial needs, and advance care planning can be complex. Palliative care (PC) teams are well equipped to support patients, families, and MCS teams throughout the continuum of MCS care.

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Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial

Cited by 57 publications

References 55 publications

Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure

Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure

Nonhospice Palliative Care Within the Treatment of End‐Stage Liver Disease

Palliative Care for Patients on Mechanical Circulatory Support

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