Virtual models of care for people with palliative care needs living in their own home: A systematic meta-review and narrative synthesis

Background: Access to palliative care in the community enables people to live in their preferred place of care, which is often home. Community palliative care services struggle to provide timely 24-h services to patients and family. This has resulted in calls for ‘accessible and flexible’ models of care that are ‘responsive’ to peoples’ changing palliative care needs. Digital health technologies provide opportunities to meet these requirements 24-h a day. Aim: To identify digital health technologies that have been evaluated for supporting timely assessment and management of people living at home with palliative care needs and/or their carer(s), and the evidence-base for each. Design: A systematic review of systematic reviews (‘meta-review’). Systematic reviews evaluating evidence for virtual models of palliative or end-of-life care using one or more digital health technologies were included. Systematic reviews were evaluated using the Risk of Bias Tool for Systematic Reviews. A narrative approach was used to synthesise results. Data sources: Medline, Embase, Web of Science, CINAHL and Cochrane Database of systematic reviews were searched for English-language reviews published between 2015 and 2020. Results: The search yielded 2266 articles, of which 12 systematic reviews met criteria. Sixteen reviews were included in total, after four reviews were found via handsearching. Other than scheduled telehealth, video-conferencing, or after-hours telephone support, little evidence was found for digital health technologies used to deliver virtual models of palliative care. Conclusions: There are opportunities to test new models of virtual care, beyond telehealth and/or video conferencing, such as 24-h command centres, and rapid response teams. Systematic review registration number: Prospero CRD42020200266

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Digital health interventions in palliative care: a systematic meta-review

npj Digital Medicine ◽

10.1038/s41746-021-00430-7 ◽

2021 ◽

Vol 4 (1) ◽

Author(s):

Anne M. Finucane ◽

Hannah O’Donnell ◽

Jean Lugton ◽

Tilly Gibson-Watt ◽

Connie Swenson ◽

...

Keyword(s):

Decision Making ◽

Palliative Care ◽

Systematic Reviews ◽

Psychological Symptoms ◽

Digital Health ◽

Evidence Synthesis ◽

Information Provision ◽

Health Interventions ◽

Meta Review

AbstractDigital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This meta-review applied a structured search of ten databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 publications. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described in studies within reviews. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making (13%), information provision or management (13%) and communication (9%). Across all reviews, mostly positive impacts were reported on education, information sharing, decision-making, communication and costs. Impacts on quality of life and physical and psychological symptoms were inconclusive. Applying AMSTAR 2 criteria, most reviews were judged as low quality as they lacked a protocol or did not consider risk of bias, so findings need to be interpreted with caution.

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Specialist palliative care, psychology, interstitial lung disease (ILD) multidisciplinary team meeting: a novel model to address palliative care needs

BMJ Open Respiratory Research ◽

10.1136/bmjresp-2018-000360 ◽

2018 ◽

Vol 5 (1) ◽

pp. e000360 ◽

Cited By ~ 6

Author(s):

Shaney L Barratt ◽

Michelle Morales ◽

Toby Speirs ◽

Khaled Al Jboor ◽

Heather Lamb ◽

...

Keyword(s):

Palliative Care ◽

Interstitial Lung Disease ◽

Lung Disease ◽

Multidisciplinary Team ◽

Hospital Admissions ◽

Models Of Care ◽

Specialist Care ◽

Care Needs ◽

Unplanned Hospital Admissions ◽

Palliative Care Needs

IntroductionPatients with progressive idiopathic fibrotic interstitial lung disease (ILD), such as those with idiopathic pulmonary fibrosis (IPF), can have an aggressive disease course, with a median survival of only 3–5 years from diagnosis. The palliative care needs of these patients are often unmet. There are calls for new models of care, whereby the patient’s usual respiratory clinician remains central to the integration of palliative care principles and practices into their patient’s management, but the optimal model of service delivery has yet to be determined.MethodsWe developed a novel, collaborative, multidisciplinary team (MDT) meeting between our palliative care, psychology and ILD teams with the principal aim of integrating specialist care to ensure the needs of persons with ILD, and their caregivers were identified and met by referral to the appropriate service. The objective of this study was to assess the effectiveness of this novel MDT meeting on the assessment of a patient’s palliative care needs.ResultsSignificant increases in advance care planning discussions were observed, in conjunction with increased referrals to community courses and teams, following introduction of this novel MDT.ConclusionsOur results suggest that our collaborative MDT is an effective platform to address patients’ unmet palliative care needs. Further work is required to explore the effect of our model on achieving the preferred place of death and reductions in unplanned hospital admissions.

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Remote Monitoring of Patient- and Family-Generated Health Data in Pediatrics

PEDIATRICS ◽

10.1542/peds.2021-054137 ◽

2022 ◽

Author(s):

Carolyn Foster ◽

Dana Schinasi ◽

Kristin Kan ◽

Michelle Macy ◽

Derek Wheeler ◽

...

Keyword(s):

Health Care ◽

Digital Literacy ◽

Care Delivery ◽

Digital Health ◽

Health Care Team ◽

Models Of Care ◽

Health Data ◽

Care Needs ◽

Case Examples ◽

Health Technologies

Remote patient monitoring (RPM) is a form of telemedicine that involves the collection and transmission of health data from a patient to their health care team by using digital health technologies. RPM can be leveraged to aggregate and visualize longitudinal patient-generated health data for proactive clinical management and engagement of the patient and family in a child’s health care. Collection of remote data has been considered standard of care for years in some chronic pediatric conditions. However, software limitations, gaps in access to the Internet and technology devices, digital literacy, insufficient reimbursement, and other challenges have prevented expansion of RPM in pediatric medicine on a wide scale. Recent technological advances in remote devices and software, coupled with a shift toward virtual models of care, have created a need to better understand how RPM can be leveraged in pediatrics to improve the health of more children, especially for children with special health care needs who are reliant on high-quality chronic disease management. In this article, we define RPM for the general pediatric health care provider audience, provide case examples of existing RPM models, discuss advantages of and limitations to RPM (including how data are collected, evaluated, and managed), and provide a list of current RPM resources for clinical practitioners. Finally, we propose considerations for expansion of this health care delivery approach for children, including clinical infrastructure, equitable access to digital health care, and necessary reimbursement. The overarching goal is to advance health for children by adapting RPM technologies as appropriate and beneficial for patients, families, and providers alike.

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RELIEF: A Digital Health Tool for the Remote Self-Reporting of Symptoms in Patients with Cancer to Address Palliative Care Needs and Minimize Emergency Department Visits

Current Oncology ◽

10.3390/curroncol28060363 ◽

2021 ◽

Vol 28 (6) ◽

pp. 4273-4280

Author(s):

Ravi Bhargava ◽

Bonnie Keating ◽

Sarina R. Isenberg ◽

Saranjah Subramaniam ◽

Pete Wegier ◽

...

Keyword(s):

Emergency Department ◽

Palliative Care ◽

Symptom Management ◽

Digital Health ◽

Clinical Intervention ◽

Emergency Department Visits ◽

Self Report ◽

Care Needs ◽

Patients With Cancer ◽

Palliative Care Needs

The lack of timely symptom reporting remains a barrier to effective symptom management and comfort for patients with cancer-related palliative care needs. Poor symptom management at home can lead to unwanted outcomes, such as emergency department visits and death in hospital. We developed and evaluated RELIEF, a remote symptom self-reporting app for community patients with palliative care needs. A pilot feasibility study was conducted at a large, community hospital in Ontario, Canada. Patients self-reported their symptoms each morning using validated clinical symptom measures and RELIEF would alert for worsening or severe symptoms. RELIEF alerts were monitored by palliative care nurses who would then contact patients to determine if appropriate clinical intervention could be initiated to avoid unnecessary emergency department visits. A total of 20 patients were recruited to use RELIEF for two months. Patients completed 80% of daily self-report assessments; 133 alerts were trigged, half of which required clinical intervention. No patient visited the emergency department for symptom management during the study. Clinical staff estimated five emergency department visits were avoided because of RELIEF—saving an estimated cost of over CAD 60,000. RELIEF is a feasible and acceptable method for the remote monitoring of patients with palliative care needs through regular symptom self-reporting.

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Digital Health Interventions in Palliative Care: A Systematic Meta-Review and Evidence Synthesis

10.1101/2020.09.16.20195834 ◽

2020 ◽

Author(s):

Anne Finucane ◽

Hannah O'Donnell ◽

Jean Lugton ◽

Connie Swenson ◽

Claudia Pagliari

Keyword(s):

Decision Making ◽

Palliative Care ◽

Systematic Reviews ◽

Symptom Management ◽

Digital Health ◽

Evidence Synthesis ◽

Information Provision ◽

Health Interventions ◽

Meta Review ◽

Education Decision

Digital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This rigorous meta-review applied a structured search of 10 databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 unique publications. Most reviews were moderate quality. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making support (13%), information provision or management (13%), and communication (9%). Positive impacts were reported on education, decision-making, information-sharing, communication, and costs. Impacts on symptom management were either positive or showed no harmful effects. However often DHIs were described but not evaluated. Responsive pragmatic research designs are now needed to guide further evaluation, implementation and to inform future service innovation.

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A Conceptual Framework of Palliative Care across the Continuum of Advanced Kidney Disease

Clinical Journal of the American Society of Nephrology ◽

10.2215/cjn.09330818 ◽

2019 ◽

Vol 14 (4) ◽

pp. 635-641 ◽

Cited By ~ 11

Author(s):

Daniel Y. Lam ◽

Jennifer S. Scherer ◽

Mark Brown ◽

Vanessa Grubbs ◽

Jane O. Schell

Keyword(s):

Palliative Care ◽

Kidney Disease ◽

End Of Life ◽

Symptom Burden ◽

Population Level ◽

Models Of Care ◽

System Level ◽

Care Needs ◽

Caregiver Support ◽

Palliative Care Needs

Kidney palliative care is a growing discipline within nephrology. Kidney palliative care specifically addresses the stress and burden of advanced kidney disease through the provision of expert symptom management, caregiver support, and advance care planning with the goal of optimizing quality of life for patients and families. The integration of palliative care principles is necessary to address the multidimensional impact of advanced kidney disease on patients. In particular, patients with advanced kidney disease have a high symptom burden and experience greater intensity of care at the end of life compared with other chronic serious illnesses. Currently, access to kidney palliative care is lacking, whether delivered by trained kidney care professionals or by palliative care clinicians. These barriers include a gap in training and workforce, policies limiting access to hospice and outpatient palliative care services for patients with ESKD, resistance to integrating palliative care within the nephrology community, and the misconception that palliative care is synonymous with end-of-life care. As such, addressing kidney palliative care needs on a population level will require not only access to specialized kidney palliative care initiatives, but also equipping kidney care professionals with the skills to address basic kidney palliative care needs. This article will address the role of kidney palliative care for patients with advanced kidney disease, describe models of care including primary and specialty kidney palliative care, and outline strategies to improve kidney palliative care on a provider and system level.

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The Importance of Early Identifications of Palliative Care Needs in Emergency Wards

10.26226/morressier.5c76c8bde2ea5a7237612860 ◽

2019 ◽

Author(s):

Mia Grillfors Mård

Keyword(s):

Palliative Care ◽

Care Needs ◽

Palliative Care Needs

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What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

BMC Palliative Care ◽

10.1186/s12904-020-00700-3 ◽

2021 ◽

Vol 20 (1) ◽

Cited By ~ 1

Author(s):

Anne M. Finucane ◽

Connie Swenson ◽

John I. MacArtney ◽

Rachel Perry ◽

Hazel Lamberton ◽

...

Keyword(s):

Palliative Care ◽

Focus Groups ◽

Healthcare Professionals ◽

Psychological Needs ◽

Care Providers ◽

Specialist Palliative Care ◽

Care Needs ◽

Complex Needs ◽

Sequential Explanatory ◽

Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

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