Palliative Care Telehealth Research Articles

An Early Palliative Care Telehealth Coaching Intervention to Enhance Advanced Cancer Family Caregivers’ Decision Support Skills: The CASCADE Pilot Factorial Trial

ContextPatients with advanced cancer often involve family caregivers in health-related decision-making from diagnosis to end-of-life; however, few interventions have been developed to enhance caregiver decision support skills. ObjectivesAssess the feasibility, acceptability, and potential efficacy of individual intervention components of CASCADE (CAre Supporters Coached to be Adept DEcision Partners), an early telehealth, palliative care coach-led decision support training intervention for caregivers. MethodsPilot factorial trial using the multiphase optimization strategy (October 2019-October 2020). Family caregivers and their care recipients with newly-diagnosed advanced cancer (n = 46 dyads) were randomized to1 of 8 experimental conditions that included a combination of one of the following three CASCADE components: 1) effective decision support psychoeducation; 2) decision support communication training; and 3) Ottawa Decision Guide training. Feasibility was assessed by completion of sessions and questionnaires (predefined as ≥80%). Acceptability was determined through postintervention interviews and participants’ ratings of their likelihood to recommend. Measures of effective decision support and caregiver and patient distress were collected at Twelve and Twenty four weeks. ResultsCaregiver participants completed 78% of intervention sessions and 81% of questionnaires; patients completed 80% of questionnaires. Across conditions, average caregiver ratings for recommending the program to others was 9.9 on a scale from 1-Not at all likely to 10-Extremely likely. Individual CASCADE components were observed to have potential benefit for effective decision support and caregiver distress. ConclusionWe successfully piloted a factorial trial design to examine components of a novel intervention to enhance the decision support skills of advanced cancer family caregivers. A fully-powered factorial trial is warranted. Key MessageWe pilot tested components of CASCADE, an early palliative care decision support training intervention for family caregivers of patients with advanced cancer. CASCADE components were acceptable and the trial design feasible, providing promising future directions for palliative care intervention development and testing. Pilot results will inform a fully-powered trial.

A cluster randomized controlled trial comparing Virtual Learning Collaborative and Technical Assistance strategies to implement an early palliative care program for patients with advanced cancer and their caregivers: a study protocol

BackgroundVirtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers.MethodsUsing Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms.DiscussionThis study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices.Trial registrationClinicaltrials.gov. NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1

Exploring the acceptance of telehealth within palliative care: A self-determination theory perspective

The aim of this paper was to explore potential divergence and convergence in relation to health care professionals’ and patients’ acceptability of the use of telehealth within palliative care provision through the lens of Self-Determination Theory. The research utilized a deductive qualitative approach utilizing semi-structured interviews to explore divergence and convergence between health care professionals’ preconceptions of the use of telehealth in palliative care and the lived experiences of patients accessing support in this manner. Semi-structured interviews were conducted with both professionals and patients to explore whether the barriers and benefits of telehealth perceived by professionals corresponded to the patient’s lived experience of utilizing the technology in their palliative care. Interviews were analyzed using a deductive thematic analysis. Professionals and patients identified that the use of telehealth could satisfy the need for autonomy, however this manifested in different ways. Greater divergence was apparent between patient and professional perceptions about how telehealth could satisfy the need for relatedness and competence needs. The findings of this paper highlight how professionals preconceived concerns about the use of telehealth in relation to providing supportive palliative care may not be realized when exploring the experiences of patients accessing services through this medium. This paper highlights the important role of psychological need satisfaction when considering acceptability of telehealth, and motivation to engage in the implementation of technologically driven health services.

Exploring paramedics’ intention to use a specialist palliative care telehealth service

A large proportion of expected deaths do not occur at home, despite often being the dying person’s preference. Paramedics play an integral role in hospital admissions when someone is close to death. As illness worsens, paramedics are often called and ascertain whether hospitalisation is appropriate. In a 12-month period, Ambulance Victoria (Australia) recorded 4348 palliative related callouts, 70% resulting in hospitalisation. Paramedics throughout the world recognise the need for extra palliative care training or support. One solution is a specialist palliative care support telehealth service from palliative specialists (usually in tertiary hospitals) to paramedics on call-outs to people with life-limiting illnesses. However, to maximise uptake and sustainability, it is prudent to examine factors that influence acceptance of such a service. In the current study, 112 paramedics employed by the Queensland Ambulance Service completed an online survey examining their Intention to Use the Specialist Palliative Care telehealth service as a function of the Technology Acceptance Model constructs (Perceived Usefulness, Perceived Ease of Use and Attitudes toward technology) and Palliative Care Self-Efficacy. After controlling for age, a hierarchical multiple regression analysis demonstrated the predictive utility of Perceived Usefulness and Attitudes. Palliative Care Self-efficacy did not add any significant variance to the model. This research highlights the importance of addressing paramedics’ perceptions regarding the telehealth service and its usefulness when implementing a similar service model.

Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home-based end-of-life care.

Children with terminal cancer and their families describe a preference for home-based end-of-life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric-trained hospice providers. The purpose of this longitudinal palliative telehealth support pilot study was to explore physical and emotional symptom burden and family impact assessments for children with terminal cancer receiving home based-hospice care. Each child received standard of care home-based hospice care from an adult-trained rural hospice team with the inclusion of telehealth pediatric palliative care visits at a scheduled minimum of every 14days. Eleven children (mean age 11.9years) received pediatric palliative telehealth visits a minimum of every 14days, with an average of 4.8 additional telehealth visits initiated by the family. Average time from enrollment to death was 21.6days (range 4-95). Children self-reported higher physical symptom prevalence than parents or hospice nurses perceived the child was experiencing at time of hospice enrollment with underrecognition of the child's emotional burden. At the time of hospice enrollment, family impact was reported by family caregivers as 46.4/100 (SD 18.7), with noted trend of improved family function while receiving home hospice care with telehealth support. All children remained at home for end-of-life care. Pediatric palliative care telehealth combined with adult-trained rural hospice providers may be utilized to support pediatric oncology patients and their family caregivers as part of longitudinal home-based hospice care.

Can you hear me now?: Improving palliative care access through telehealth.

Telehealth has been increasingly used to expand healthcare access over the last two decades. However, this had not been the case for palliative care (PC), because telehealth was considered nontraditional and impractical due to the sensitive nature of conversations and a "high touch" philosophy. Motivated by limited PC access to rural and underserved populations and positive PC telehealth studies, clinical PC telehealth models have been developing. However, nearly overnight, the COVID-19 pandemic accelerated the use and uptake of telehealth across health care and especially in PC. As a result, clinicians, administrators, and others agree that telehealth is "here to stay," and will likely maintain widespread use and refinement beyond rural areas. The purpose of this review is to describe exemplar PC telehealth programs in research and clinical practice, including pros and cons, lessons learned, and future directions for the ongoing development and expansion of PC via telehealth across diseases and the lifespan.

Picking Up the Pieces: Healthcare Quality in a Post-COVID-19 World.

Picking Up the Pieces: Healthcare Quality in a Post-COVID-19 World.

Reinventing Palliative Care Delivery in the Era of COVID-19: How Telemedicine Can Support End of Life Care.

Telemedicine technology has become essential to healthcare delivery in the COVID-19 era, but concerns remain regarding whether the intimacy and communication that is central to high-quality palliative care will be compromised by the use of this technology. We employed a business model approach to identify the need for system innovation in palliative care, and a quality improvement approach to structure the project. Products from this project included a standard operating procedure for safe use of tablet computers for inpatient palliative care consultations and family visitations; tablet procurement with installation of video telehealth software; and training and education for clinical staff and other stakeholders. We describe a case illustrating the successful use of palliative care telehealth in the care of a COVID-19-positive patient at the end of life. Successful use of video telehealth for palliative care involved overcoming inertia to the development of telehealth infrastructure and learning clinical video telehealth skills; and engaging front-line care staff and family members who were open to a trial of telehealth for communication. Information gleaned from family about the patient as a person helped bedside staff to tailor care toward aspects meaningful to the patient and family and informed best practices to incorporate intimacy into future palliative video consultations and family visit.

Effect of an Early Palliative Care Telehealth Intervention vs Usual Care on Patients With Heart Failure

National guidelines recommend early palliative care for patients with advanced heart failure, which disproportionately affects rural and minority populations. To determine the effect of an early palliative care telehealth intervention over 16 weeks on the quality of life, mood, global health, pain, and resource use of patients with advanced heart failure. A single-blind, intervention vs usual care randomized clinical trial was conducted from October 1, 2015, to May 31, 2019, among 415 patients 50 years or older with New York Heart Association class III or IV heart failure or American College of Cardiology stage C or D heart failure at a large Southeastern US academic tertiary medical center and a Veterans Affairs medical center serving high proportions of rural dwellers and African American individuals. The ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers) intervention comprises an in-person palliative care consultation and 6 weekly nurse-coach telephonic sessions (20-40 minutes) and monthly follow-up for 48 weeks. Primary outcomes were quality of life (as measured by the Kansas City Cardiomyopathy Questionnaire [KCCQ]: score range, 0-100; higher scores indicate better perceived health status and clinical summary scores ≥50 are considered "fairly good" quality of life; and the Functional Assessment of Chronic Illness Therapy-Palliative-14 [FACIT-Pal-14]: score range, 0-56; higher scores indicate better quality of life) and mood (as measured by the Hospital Anxiety and Depression Scale [HADS]) over 16 weeks. Secondary outcomes were global health (Patient Reported Outcome Measurement System Global Health), pain (Patient Reported Outcome Measurement System Pain Intensity and Interference), and resource use (hospital days and emergency department visits). Of 415 participants (221 men; baseline mean [SD] age, 63.8 [8.5] years) randomized to ENABLE CHF-PC (n = 208) or usual care (n = 207), 226 (54.5%) were African American, 108 (26.0%) lived in a rural area, and 190 (45.8%) had a high-school education or less, and a mean (SD) baseline KCCQ score of 52.6 (21.0). At week 16, the mean (SE) KCCQ score improved 3.9 (1.3) points in the intervention group vs 2.3 (1.2) in the usual care group (difference, 1.6; SE, 1.7; d = 0.07 [95% CI, -0.09 to 0.24]) and the mean (SE) FACIT-Pal-14 score improved 1.4 (0.6) points in the intervention group vs 0.2 (0.5) points in the usual care group (difference, 1.2; SE, 0.8; d = 0.12 [95% CI, -0.03 to 0.28]). There were no relevant between-group differences in mood (HADS-anxiety, d = -0.02 [95% CI, -0.20 to 0.16]; HADS-depression, d = -0.09 [95% CI, -0.24 to 0.06]). This randomized clinical trial with a majority African American sample and baseline good quality of life did not demonstrate improved quality of life or mood with a 16-week early palliative care telehealth intervention. However, pain intensity and interference (secondary outcomes) demonstrated a clinically important improvement. ClinicalTrials.gov Identifier: NCT02505425.

Educate, Nurture, Advise, Before Life Ends: Comprehensive Heart Care for Patients and Families (ENABLE CHF-PC): An Early Palliative Care Telehealth Randomized Trial for Patients with Advanced Heart Failure (103A)

Educate, Nurture, Advise, Before Life Ends: Comprehensive Heart Care for Patients and Families (ENABLE CHF-PC): An Early Palliative Care Telehealth Randomized Trial for Patients with Advanced Heart Failure (103A)

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

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. 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. 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-to-day 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. 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. 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. 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, 0.3 [0.3] vs 0.4 [0.3]; difference, -0.1 [0.5]; d = -0.02) or depression measure (mean [SE] improvement from baseline, -0.2 [0.4] vs -0.3 [0.3]; difference, 0.1 [0.5]; d = 0.03). No between-group differences were observed in the Montgomery-Borgatta Caregiver Burden scales (d range, -0.18 to 0.0). Differences in secondary outcomes were also not significant (d range, -0.22 to 0.0). This 2-site randomized clinical trial of a telehealth intervention for family caregivers of patients with advanced heart failure, more than half of whom were African American and most of whom were not distressed at baseline, did not demonstrate clinically better quality of life, mood, or burden compared with usual care over 16 weeks. Future interventions should target distressed caregivers and assess caregiver effects on patient outcomes. ClinicalTrials.gov Identifier: NCT02505425.

Bridging the Gap: Telehealth Applications in Palliative Care (P20)

•Describe the various modalities and settings of telehealth use in palliative care—inpatient, community-based, and Project ECHO.•Identify the legal and billing/insurance issues relevant for telehealth in palliative care.•Summarize advantages, challenges, and barriers to the implementation of telehealth in palliative care.•Develop a workplan for instituting or expanding telehealth in palliative care. As with many specialties, it is difficult to sustain palliative care programs in rural areas. This is particularly true in areas such as the Southeast where non-urban hospitals tend to be small and for-profit, two characteristics associated with lacking palliative care services. Early efforts to address rural inequities focused on moving specialists into areas of need, but some of these succumbed to a lack of consistent volume and revenue for the time expended by specialists. More recently, efforts to address rural inequities have shifted to using technology to bridge the distances. Through detailed descriptions of initiatives at three major palliative care centers, participants will understand the strengths and opportunities for leveraging telehealth to expand and sustain palliative care. Workshop leaders will describe how and why they have implemented these four models: tele-medicine by palliative providers to a rural clinic; tele-consultation for inpatient palliative care; tele-monitoring to increase efficiency and communication for home-based palliative care; and tele-mentoring to push palliative care practices from major centers out to community providers. Workshop leaders will provide detailed implementation checklists for each model; descriptions of advantages and disadvantages of each; technological, regulatory, and legal considerations including variation across states; and concise summaries of the evidence base for each. Slides and additional tables summarizing the essential strengths and pitfalls for implementing each model will be provided, as well as references to articles and other resources. Throughout the workshop, participants will be encouraged to discuss their own efforts to reach rural patients. Worksheets will be used to give participants an opportunity to begin fleshing out their own version of each model, and to apply the strengths and weaknesses of each of these models in their own communities.

Clinical Informatics for Beginners: Understanding How Informatics Can Improve Your Practice Starting Tomorrow (FR413)

•Define clinical informatics and explain key concepts and language needed by hospice and palliative care professionals to more effectively advocate for Supportive Care EMR needs.•List opportunities to obtain deeper expertise, including clinical information.•Explain multi-disciplinary applications of informatics in Supportive Care.•Explain how informatics can be leveraged to improve care models and quality of care delivery. Why should palliative care and hospice professionals care about clinical informatics? Because harnessing informatics for supportive care nursing, social work, spiritual care, and clinicians is able to improve nearly every element of healthcare delivery for our patients, families, and providers. Through the analysis, design, implementation, and evaluation of information and information systems, clinical informatics enhances individual and population health outcomes, improves patient care, and strengthens the clinician-patient relationship. Hence it is vitally important that palliative care and hospice professionals and administrators understand how to unlock the potential of informatics in research and clinical delivery. In this practical and interactive session, we will cover core concepts, strategies, and language that everyone in supportive care should understand about informatics, provide insight into how informatics will shape the future of our field, and share how clinicians may deepen their expertise or even attain board certification. We will explain the importance of data collection and visualization by programs in order to advocate for multi-disciplinary programmatic growth and affect change in the quality of care delivery. We will explain the ongoing efforts to merge three major palliative care databases, PCQN, QDACT, and CAPC, and detail how informatics can be leveraged for mobile health applications and data-driven, trigger-based clinical decision support. We will conclude our presentation by discussing how informatics might shape the future of palliative care through novel clinical care delivery models, using clinical trials of mobile digital health applications and telehealth in palliative care as examples. Our hope is for the presentation to serve as a catalyst to facilitate palliative care and hospice professionals attaining the informatics skills necessary to effectively advocate for and partner with local IT governance to enhance patient-centric, multi-disciplinary care delivery and in doing so, help meet the rising needs of our field in the years to come.

VetConnect: A Quality Improvement Program Delivering Palliative Care Services via Telehealth to Veterans Residing in Nursing Homes (QI645)

•Describe telehealth palliative care for veterans in nursing homes, an innovative mode of service delivery, and its impact.•Discuss implications and applications for future use and expanded roll-out. Beginning in June 2017, the VetConnect program launched, providing palliative, geriatrics, and mental health specialty care via telehealth to veterans in contracted community nursing homes (CNH) and state veterans nursing homes (SVHs) across Colorado and Oklahoma. This model of care allows for increased access to care for veterans who frequently have difficulty accessing specialty care services, as well as efficiency in healthcare delivery by reducing travel and wait times. Implement and evaluate the impact of VetConnect, which provides care to nursing home veterans via telehealth in palliative care, with the specific goal of increasing quality veteran end-of-life and serious disease care. A palliative care physician conducted telehealth visits using secure video conferencing technology. Visit data including technological success metrics, resulting consults and recommendations, and field notes were recorded by project nurses who were also present during the telehealth visits at the nursing homes. Qualitative interviews were conducted with project providers (physicians, social workers nurses, and nursing home staff) to better understand project implementation. Since the program start, 90 visits have been conducted in palliative care among 78 veterans in 14 nursing homes. Thematic analysis of interviews has revealed that telehealth palliative care through VetConnect a.) meets the need for palliative specialty care, and b.) positively impacts Veteran's quality of life. The evaluation indicates that VetConnect serves as a feasible and effective service particularly in providing support to frail veterans at end of life or managing serious diseases. The VetConnect program offers insights as to best practices regarding palliative specialty care delivery via telehealth to veterans in nursing homes.

Effects of Early Palliative Care for Family Caregivers of Persons with Advanced Heart Failure: The ENABLE CHF-PC Randomized Controlled Trial (FR440B)

•Explain the experience and tasks undertaken by family caregivers of patients with advanced heart failure.•Summarize results and implications of the ENABLE CHF-PC trial for family caregivers. Family caregivers (CGs) provide high levels of care to persons with advanced heart failure and are at high risk for distress and poor quality of life (QoL). Determine the effect of a nurse-led palliative care telehealth intervention (ENABLE CHF-PC) on advanced heart failure CGs QoL and mood over 16 weeks. Intervention versus usual care single-blind randomized controlled trial (August 2016-October 2018; ClinicalTrials.gov: NCT02505425). Family caregivers of patients with NYHA Class III/IV heart failure were recruited from outpatient heart failure clinics at a large academic tertiary care medical center and a Veteran Affairs Medical Center. Intervention-group caregivers received four weekly psychosocial and problem-solving support telephonic sessions facilitated by a trained nurse coach plus monthly follow-up for 48 weeks. The primary outcomes were QoL (Bakas Caregiver Outcomes Scale [BCOS]), mood (Hospital Anxiety and Depression Scale [HADS]), and burden (Montgomery-Borgatta Caregiver Burden scales [MBCB]) over 16 weeks. Of 159 CGs randomized to ENABLE CHF-PC (n=83) or usual care (n=76), mean age was 57.9, 85.4% were female, 51.9% were African-American, and 65.2% were the patient's spouse/partner. Over 16 weeks, the mean BCOS score improved 0.7 points (SE=1.7) in the intervention arm and 1.1 points (SE=1.6) in the usual care arm (difference, -0.4; 95% CI, -5.1-4.3; d=-0.03). No relevant between-group differences were observed for HADS-anxiety (d=-0.02), HADS-depression (d=0.03), and the MBCB scales (d range: -0.18-0.0). P-values for all outcomes were >.05. This 2-site randomized controlled trial of the ENABLE CHF-PC intervention for family caregivers of advanced heart failure patients, over half of whom were African-Americans and most of whom were not distressed at baseline, did not demonstrate clinically improved QoL, mood, or burden compared to usual care over 16 weeks.

Educate, Nurture, Advise, Before Life Ends: Comprehensive Heart Care for Patients and Families (ENABLE CHF-PC): An Early Palliative Care Telehealth Randomized Trial for Patients with Advanced Heart Failure (FR440A)

•Describe an early palliative care telehealth model for patients with advanced heart failure.•Synthesize the results and implications of an early palliative care study for patients with heart failure. Palliative care (PC) for advanced stage heart failure (HF) is recommended by national organizations and guidelines, however there are few tested integrated HF PC models. Determine the effect of a nurse coach-led, PC telehealth intervention (ENABLE CHF-PC) on advanced HF patients' quality of life (QOL) and mood over 32 weeks. Intervention (INV) vs. usual HF care (UC) randomized clinical trial (August 2016-October 2018) at a tertiary academic and Veteran's Affairs Medical Center serving high proportions of rural and African American (AA) patients. NYHA Class III/IV HF patients received UC or ENABLE CHF-PC consisting of an in-person PC consultation and 6 weekly nurse-coach psychoeducational telephonic sessions and monthly follow-up for 1 year. Primary outcomes were QoL (Kansas City Cardiomyopathy Questionnaire [KCCQ] & [FACIT-pal-14]) and mood (Hospital Anxiety Depression Scale [HADS]) over 32 weeks. Of 415 patient participants, mean age was 64, 53% male; 55% AA; 26% rural; 46% 0.05) <high-school education; 75% reported having a caregiver; 47% reported reduced QoL (KCCQ clinical summary score ≤ 50). Over 32 weeks, trends favored INV group (mean KCCQ improved 5.1 points (±1.4 SD) INV versus 2.7 (±1.3) UC; mean FACIT-pal-14 improved 1.8 (±0.6) INV vs 0.9 (±0.6) UC; HADS-anxiety decreased equally in both groups (±-0.1) and HADS-depression decreased -0.9 (±0.3) INV vs -0.5 (±0.2) UC); however there was not a clinically significant improvement in INV group QOL and mood compared to UC (all p's>0.05). The lack of a clinically significant improvement in the INV relative to UC group may be explained by relatively high mean baseline QOL and mood scores. The high proportion of AA participants suggests acceptability of early PC in this population.

Telehealth in palliative care is being described but not evaluated: a systematic review

BackgroundTelehealth is growing and its application in palliative care is seen as a solution to pressures on palliative care services. A 2010 UK review reported growing awareness of telehealth in palliative care but a lack of evidence-based research to support its use. The primary aim of this review was to describe the current use of telehealth in palliative care in the UK and evaluate telehealth initiatives against a digital service standard. The secondary aim was to explore whether telehealth results in a reduction in emergency care access.MethodsSystematic review of the literature with thematic synthesis. Records were screened and data extracted by two reviewers. EMBASE, MEDLINE, CINAHL, Psychinfo and Cochrane central register for controlled trials were searched using pre-defined terms. Hand searching of conference literature, thesis databases and citation tracking was also conducted. The protocol for this systematic review was registered with PROSPERO and can be found at http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42017080038.ResultsThe search identified 3807 titles and 30 studies were included in the review. Telehealth was used to support patients and carers, electronic record keeping and professional education. Notably, the number of home telemonitoring initiatives for patients had increased from the 2010 review. Despite this variety, many studies were small scale, descriptive and provided little evidence of evaluation of the service. Ten papers were sufficiently detailed to allow appraisal against the digital service standard and only one of these met all of the criteria to some extent. Seven studies made reference to emergency care access.ConclusionsAlthough there is growth of telehealth services, there remains a lack of evaluation and robust study design meaning conclusions regarding the clinical application of telehealth in palliative care cannot be drawn. There is insufficient evidence to appreciate any benefit of telehealth on access to emergency care. Future work is needed to evaluate the use of telehealth in palliative care and improve telehealth design in line with digital service standards.

A Feasibility Study of Home-Based Palliative Care Telemedicine in Rural Nova Scotia.

It was recently estimated that only 30% of Canadians have reliable access to palliative care services. Allocating funding to improve access to skilled palliative care in rural or remote settings is challenging in an era of increasing demand and competing priorities, underscoring the need for innovative palliative care service delivery that optimizes use of low-cost readily available technology. This study evaluated the use of the FaceTime application on an Apple iPad to improve timely access to physician consultation for home-based palliative care patients living in rural Nova Scotia. Patients enrolled with the Hants Community Palliative Care Program who consented to participate (n = 15) received regular home-based visits from a palliative care nurse who used the FaceTime application to connect with the palliative care physician in Halifax. Participants were then asked to complete a questionnaire evaluating their experience. Results indicated that using FaceTime through cellular data networks is feasible in rural areas of Nova Scotia. All participants reported that both the audio and visual quality allowed them to communicate easily with the doctor, and no consultations were terminated due to network instability. Patients also found the FaceTime encounter highly acceptable with 86% reporting they were "satisfied" or "very satisfied"; 100% stated that their medical concerns were addressed and 100% were willing to use FaceTime again. The results add to the limited literature exploring the application of telehealth in palliative care and demonstrating the utility of low-cost commonly used technology to improve access to palliative care in underserviced areas.

Completing the Bucket List: Leveraging Telehealth in Palliative Care to Support Legacy-making and Dignity

Palliative Care Telemedicine research has focused on avoidance of patient travel, technology, reduction of acute healthcare utilization, access and efficacy of care. The field lacks emphasis on priorities of sick people with good functional status and how Telehealth may support other values, including existential concerns. We present a Telehealth use case to address palliative care patient priorities beyond clinical needs. Case: A 58 year old married man with advanced metastatic lung cancer is receiving oral targeted anticancer therapy and palliative care. He established goals of care, including the completion of his ‘bucket list'. To achieve his goals he wished to travel outside our service area ‘to live, connect, share unforgettable moments with precious people in my life, and create lasting memories for them'. We agreed to use Telehealth video conferencing to conduct regular assessment visits during his travels to maintain his comfort and guide care. Our most recent Telehealth videoconference was conducted while he was in the southwestern United States, where he had traveled to experience and photograph favorite majestic landscapes. The visit entailed symptom assessment, but also exploration of the events and sights he found most meaningful. In the course of our Tele-visit, he rotated his tablet screen to show us his view of the magnificent rock formations outside and narrated the shared awe-inspiring vista. As he reported the treasured memories he and his wife had recorded, he described the particular experiences that made him feel most alive and elevated his spirits. Our staff was inspired by palliative Telehealth encounters that enabled timely travel-based legacy-making and dignity-promoting experiences. Telehealth videoconferencing may facilitate patient legacy-making, dignity and staff resiliency. Rather than using Telehealth to avoid travel burden, technology was leveraged to foster patient travel toward realization of goals. Research will further examine Telehealth facilitation of legacy and dignity work.

Educate, Nurture, Advise, Before Life Ends\xa0Comprehensive Heartcare for Patients and Caregivers (ENABLE CHF-PC): study protocol for a randomized controlled trial

BackgroundPalliative care is specialized medical care for people with serious illness that is focused on providing relief from symptoms and stress and improving the quality of life (QOL) for patients and their families. To help the 6.5 million U.S. adults and families affected by heart failure manage the high symptom burden, complex decision-making, and risk of exacerbation and death, the early integration of palliative care is critical and has been recommended by numerous professional organizations. However, few trials have tested early outpatient community-based models of palliative care for patients diagnosed with advanced heart failure and their caregivers. To address this gap, through a series of formative evaluation trials, we translated an oncology early palliative care telehealth intervention for heart failure to create ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends, Comprehensive Heartcare for Patients and Caregivers).Methods/DesignThe primary objective of this multisite pragmatic randomized controlled trial is to test the efficacy of ENABLE CHF-PC plus usual heart failure care compared to usual care alone. Community-dwelling persons who are ≥50 years of age with New York Heart Association class III/IV or American Heart Association/American College of Cardiology stage C/D heart failure and their primary caregiver (if present) are being randomized to one of two study arms. The ENABLE CHF-PC intervention group receives usual heart failure care plus an in-person palliative care assessment by a board-certified palliative care provider (caregivers are invited to attend), a series of nurse coach-led, weekly psychoeducational 20 to 60 min phone sessions using a guidebook called Charting Your Course (patients: 6 sessions and caregivers: 4 sessions), and monthly check-in calls. Charting Your Course topical content includes problem-solving, coping, self-care and symptom management, communication, decision-making, advance care planning, and life review (patients only). Primary outcomes include patient QOL and mood (depressive symptoms/anxiety) and caregiver QOL, mood, and burden at 8 and 16 weeks after baseline. Outcomes will be examined using an intention-to-treat approach and mixed effects modeling for repeated measures.DiscussionThis trial will determine whether the ENABLE CHF-PC model of concurrent heart failure palliative care is superior to usual heart failure care alone in achieving higher patient and caregiver QOL, improving mood, and lowering burden.Trial registration ClinicalTrials.gov, NCT02505425. Registered on 22 July 2015.