Palliative Care Service Delivery Research Articles

Early integration of outpatient palliative care among adults with advanced cancer in a safety-net health system.

195 Background: Medically underserved adults with cancer present at later disease stages. The American Society of Clinical Oncology recommends all advanced cancer patients receive early intervention by a palliative care (PC) team soon after diagnosis (within 8 weeks) and during active treatment. Few studies have examined early integration of PC in the outpatient setting among advanced cancer patients within a safety-net system. This study examined patterns of outpatient PC service delivery (referrals and visits) for advanced cancer patients seen in the primary safety-net provider of cancer care for under- and uninsured adults in Dallas, TX. Methods: Patients diagnosed with advanced-stage solid tumor and who had at least one outpatient oncology visit January 1, 2018 to July 31, 2023 at the safety-net system were identified via electronic health record. The primary outcome was timeliness of outpatient PC referral (categorical outcome). Among patients with an outpatient PC referral, we used Kruskal-Wallis to test univariate associations across key characteristics, including age, race/ethnicity, cancer site, preferred language, insurance, and diagnosis year. Further, we used multivariate logistic regression to evaluate associations between key characteristics and completed PC visits among those with any outpatient PC referral. Results: Among 1,572 eligible patients (mean age 59, range: 21-94), 44% were female and 76% were non-White. Diagnoses included lung (20%), gastrointestinal (17%), colorectal (14%), breast (9%), prostate (9%), head/neck (9%), pancreatic (8%), and gynecologic (6%) cancers. Over half (n=870, 55%) of patients received an outpatient PC referral during the study period. Of those with a referral, 486 (56%) patients were referred ≤ 8 weeks of diagnosis, 157 (18%) between 9 and 24 weeks, 105 (12%) between 25 and 52 weeks, and 122 (14%) > 52 weeks. Timeliness of referral varied according to race/ethnicity and cancer type (p<.05; Table). Two-thirds of referred patients (n=576) completed a PC visit during the study period. In the adjusted regression model, compared to males, females had higher odds of completing a PC visit – (aOR, 1.40; 95% CI, 1.01-1.94). Conclusions: Just over half of advanced cancer patients received a referral to the outpatient PC team. Nearly half of referred patients had the referral ordered after 8 weeks of diagnosis. Except for gender, there were no other factors associated with PC visit completion. These findings demonstrate a need and potential for interventions targeting PC service delivery to improve care for underserved cancer patients. Time from diagnosis to PC referral.* ≤8 Weeks 9 - 24 Weeks 25 - 52 Weeks > 52 Weeks Cancer type (%) Colorectal 50 16 17 17 Lung 64 17 11 8 Pancreatic 64 19 8 9 Prostate 30 17 12 40 Race/ethnicity, (%) White 66 14 10 9 Black 54 22 12 12 Hispanic 52 17 13 18 Select cancer types shown where significant differences were found. *p<.05.

Assessment of needs, challenges, and re-design considerations for culturally sensitive provision and delivery of palliative care supports and services for older adults who prefer to age and die in place in diverse India.

As the global older adult population continues to grow, challenges related to managing multiple chronic conditions (MCCs) or multimorbidity underscore the growing need for palliative care. Palliative care preferences and needs vary significantly based on context, location, and culture. As a result, there is a need for more clarity on what constitutes palliative care in diverse settings. Our objective was to present an international perspective on palliative care in India, a culturally diverse and large ancient Eastern middle-income country. In this narrative review article, we considered three questions when re-designing palliative care for older adults aging-in-place in India: (I) what are the needs for palliative care for persons and their families? (II) Which palliative care domains are essential in assessing improvements in the quality of life (QoL)? (III) What patientreported measures are essential considerations for palliative care? To address these questions, we provide recommendations based on the following key domains: social, behavioral, psychological, cultural, spiritual, medical, bereavement, legal, and economic. Using an established and widely reported conceptual framework on aging and health disparities, we provide how these domains map across multiple levels of influence, such as individual or family members, community, institutions, and health systems for achieving the desired QoL. For greater adoption, reach, and accessibility across diverse India, we conclude palliative care must be carefully and systematically re-designed to be culturally appropriate and community-focused, incorporating traditions, individual preferences, language(s), supports and services from educational and health institutions, community organizations and the government. In addition, national government insurance schemes such as the Ayushman Bharat Yojna can include explicit provisions for palliative care so that it is affordable to all, regardless of ability to pay. In summary, our considerations for incorporating palliative care domains to care of whole person and their families, and provision of supports of services from an array of stakeholders broadly apply to culturally diverse older adults aging in place in India and around the globe who prefer to age and die in place.

Quality indicators for integrating oncology and home palliative care in Japan: modified Delphi study.

Home palliative care service increases the chance of dying at home, particularly for patients with advanced cancer, but late referrals to home palliative care services still exist. Indicators for evaluating programs that can facilitate the integration of oncology and home palliative care have not been defined. This study developed quality indicators for the integration of oncology and home palliative care in Japan. We conducted a systematic literature review (Databases included CENTRAL, MEDLINE, EMBASE, and Emcare) and a modified Delphi study to develop the quality indicators. Panelists rated a potential list of indicators using a 9-point scale over three rounds according to two criteria: appropriateness and feasibility. The criterion for the adoption of candidate indicators was set at a total mean score of 7 or more. Final quality indicators with no disagreement were included. Of the 973 publications in our initial search, 12 studies were included. The preliminary list of quality indicators by systematic literature review comprised 50 items. In total, 37 panelists participated in the modified Delphi study. Ultimately, 18 indicators were identified from the following domains: structure in cancer hospitals, structure in home palliative care services, the process of home palliative care service delivery, less aggressive end-of-life care, patient's psychological comfort, caregiver's psychological comfort, and patient's satisfaction with home palliative care service. Comprehensive quality indicators for the integration of oncology and home palliative care were identified. These indicators may facilitate interdisciplinary collaboration between professional healthcare providers in both cancer hospitals and home palliative care services.

Resident Care in the “In-Between Time”: Cross-Sector Perspectives on Enhancing Synergy Between Palliative Care and Permanent Supportive Housing

Despite established disparities in serious illness prevalence among formerly homeless people living in permanent supportive housing, there is a dearth of research aimed at promoting and enhancing palliative care service delivery in this setting. This paper describes current practices, perceived barriers, and recommendations in permanent supportive housing for residents living with serious illness through a thematic analysis of interviews with cross-sector stakeholders ( n = 30) from the Research and Supportive Care at Later-life for Unhoused People (RASCAL-UP) study. Themes identified across resident care, program collaboration, and policy and environment areas included: (1) unique resident care needs; (2) on-site relationships; (3) adaptation of aging, disability, and healthcare services for residents; (4) internal implementation barriers; (5) preparing the environment for serious illness; and (6) missing levels of care. From these results, we put forth recommendations for future collaborative care intervention development, supportive housing policy, and capacity-building efforts for healthcare and housing providers alike.

Abstract PO3-10-04: Palliative Care, Healthcare Utilization, and Disparities in Deceased Breast Cancer Patients in U.S. Hospitals: Analysis of National Inpatient Sample

Abstract Objective: This study aims to explore the characteristics of receiving palliative care and the patterns of utilization among breast cancer patients using a large-scale representative population-based sample. Methods: A retrospective analysis was performed on hospitalization data obtained from the National Inpatient Sample (NIS) covering the period from January 2016 to December 2019. The objective of the study was to investigate the characteristics and disparities associated with the provision of palliative care to breast cancer patients who had passed away, and to evaluate its impact on healthcare utilization as indicated by discounted hospital charges and length of stay (LOS). To achieve this, multivariate linear and logistic regression analyses were conducted, with the data stratified according to age, race, Charlson comorbidity index, insurance status, patient's zip code, and hospital characteristics. The classification and identification of the study population were performed using ICD-10 codes. Results: In the study, a total of 6,325 deceased breast cancer patients were identified from hospitalization records. Among them, 59.16% (n=3,742) received palliative care during their hospital stay. Multivariate linear regression analysis revealed that patients who received palliative care experienced a significant reduction in LOS by an average of 0.67 days (-1.246 to -0.898, p = 0.02) compared to those who did not receive palliative care. Furthermore, the palliative care group exhibited lower total charges, with a mean decrease of $21,392 (-28205 to -14578, p=0.00) compared to the non-palliative care group. Multivariate logistic regression analysis indicated that patients with black race had lower odds of receiving palliative care, while those with higher household income and patients admitted to larger hospitals had higher odds of receiving palliative care. Additionally, patients with private insurance had a higher probability of receiving palliative care compared to other insurance groups. Conclusion: Palliative care has demonstrated its benefits in reducing healthcare utilization costs and length of stay for breast cancer patients. However, disparities exist in access to palliative care, particularly among Black patients and those with lower household income. Larger hospitals and patients with private insurance show higher rates of palliative care utilization. Addressing these disparities is crucial to ensure equitable access, optimize patient outcomes, and improve resource allocation. Integrating palliative care into breast cancer hospitalizations requires targeted interventions. Further research and implementation efforts are needed to enhance the availability and delivery of palliative care services for all patients, regardless of their demographics or socioeconomic backgrounds. Health policymakers should consider these findings in their resource allocation decisions as palliative care plays an increasingly important role in cancer treatment. Odds of Receiving Palliative care among deceased breast cancer patients XX XX Length Of Stay and Total Charges XX XX Citation Format: Rushin Patel, Zalak Patel, Mrunal Patel, Darshil Patel, Afoma Onyechi, Akshit Chitkara, Femina Patel. Palliative Care, Healthcare Utilization, and Disparities in Deceased Breast Cancer Patients in U.S. Hospitals: Analysis of National Inpatient Sample [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO3-10-04.

Using the Tasmanian Palliative and End of Life Care Policy Framework (2022) to assess service delivery in a rural general practice.

This commentary uses the Tasmanian Palliative and End of Life Care Policy Framework (2022; the TPE Framework) to reflect upon palliative care services delivered by a rural Tasmanian general practice. Rural populations have challenges in accessing many healthcare services, including palliative care. General practitioners (GPs) and other primary healthcare workers are frequently relied upon to deliver palliative care in rural Australia. Palliative care is often needed before the end-of-life phase and patients prefer this to be delivered in the community or at home. GPs face challenges and barriers in continuing to deliver home-based palliative care services. All Medical Benefit Scheme billings for after-hours or home-based palliative care provided by the practice, between September 2021 and August 2022, were identified and patient demographic and clinical details collated. To further understand this data, nine GPs were surveyed to explore their attitudes to provision of palliative care service to the local rural communities they serve. These data highlighted several priority areas of the TPE Framework. The TPE Framework is used here to add to the shared understanding of palliative care service delivery in a rural community, and to see if GP's responses align with the priorities of the TPE Framework. Of the 258 after-hours and home-visits delivered over a 12-month period, almost 58% (n = 150) were for palliative care. Patients receiving palliative care were generally older than non-palliative patients visited (79.9 years vs. 72.0 years respectively; p = 0.004). Patients not at imminent risk of death (64.0%) were more frequently recipients of home-visits. Of the nine GPs responding to the survey, most intended to continue home visits for palliative patients. Disincentives to providing palliative care during home visits included a lack of time during the day (or after hours), low levels of interdisciplinary coordination or role-definition, and inadequate remuneration. Existing frameworks can be used as an implementation and evaluation guide to help understand local palliative care services. Using a Framework, a rural general practice in Tasmania reflected on their provision of palliative care services. Providing holistic palliative care services from a rural general practice is desirable and achievable with a coordinated, team-based approach. Access to and integration with specialist services remains a key component of community-based palliative care pathways.

Evaluating a vertical nurse-led service in the integration of palliative care in a tertiary academic hospital.

Groote Schuur Hospital is a large Academic Hospital in South Africa that is in the process of integrating palliative care (PC) via a vertical nurse-led doctor-supported (VNLDS) service that was initially established to deliver clinical care. PC integration should occur across multiple dimensions and may result in variable degrees of integration between levels of the healthcare system. This research evaluates the VNLDS through a theory-driven evaluation to describe how the service affected integration. A mixed-method sequential design consisting of a narrative literature review on the theory of integration and PC, retrospective quantitative data from a PC service delivery database, qualitative data from semi-structured interviews and document analyses. It was structured in three phases which assisted in confirming and expanding the data. Statistical analyses, deductive thematic coding and documentary analyses were conducted according to the conceptual framework of PC integration. The PC integration process was facilitated in the following ways: (i) the service provided good clinical PC; (ii) it was able to integrate on a professional level into specific diseases, such as cancer but not in all diseases; (iii) developing organizational structures within the service and (iv) the observed benefit of good clinical care increased the value stakeholders assigned to PC, thereby driving the adoption of PC. However, there are still clinicians who do not refer to PC services. This gap in referral may be grounded in assumptions and misconceptions about PC, especially at the organizational level. Observed PC service delivery is core to integrating PC across the healthcare system because it challenges normative barriers. However, the VNLDS could not achieve integration in leadership and governance, education and hospital-wide guidelines and policies. Whole system integration, foregrounding organizational commitment to PC excellence, is core to integrating PC. The VNLDS service has effectively linked PC in specific disease profiles and normalized the PC approach where healthcare workers observed the service. These integrational gaps may be grounded in assumptions and misconceptions about PC, especially at the organizational level.

Review of best practices of integrated care for people living with Motor Neurone Disease

Introduction: Motor neurone disease is a life limiting progressive neurological condition that requires a team-based approach to care. Person-centred care (PCC), integrated care and access to specialised motor neurone disease (MND) multidisciplinary clinics (MDC) are optimal approaches to the delivery of quality service for people living with MND (plwMND) for improved quality of life, health outcomes and care experiences. These MND MDCs models of care vary in design, implementation, and are predominantly specialist hospital based. Therefore, not all MND services are delivered consistently highlighting a need to explore the evidence on current practices that contribute to more effective, efficient person-centred integrated care practices across the continuum.
 Aim: This rapid review explores best practices of integrated care for people living with motor neurone disease, and their families and carers.
 Methods: A search was undertaken of six databases, Medline (Ovid), Embase (Ovid), CINAHL, Cochrane, Joanna Briggs Institute and Google Scholar. The 1469 retrieved abstracts were screened for eligibility against the inclusion criteria, and full text review was conducted on 149 studies. Data were extracted from 58 studies and a quality assessment conducted on final 45 included studies. The following information was gathered from the included studies to inform the review.
 1.What is ‘best practice’ in the management/care of plwMND
 2.What models of (integrated) care have been developed to support plwMND
 3.What are the common elements of integrated care approaches that have been implemented in MND?
 4.What impacts, outcomes, or effects of integrated care approaches have been reported for plwMND?
 
 Results: The initial review analysis indicated specialised MND multidisciplinary clinics (MDC) as ‘best practice’ in the optimal management of MND, but revealed no standardised approaches in design and implementation, the multidisciplinary workforce, and degree of integration and partnerships between hospitals and the community. MND MDC are predominantly hospital based, but the inclusion of either outreach community teams, hub and spoke approaches, and/or a hybrid design, (care delivered in person and /or by telehealth), improved integration, knowledge sharing and coordination across services. The timing of introduction and delivery of palliative care services differs but there is greater focus on integration into MND MDC, or earlier referrals to dedicated palliative care service and/or specific palliative care training of neurologist/multidisciplinary team, to optimise symptom management, decision-making and end of life care. Additional features that enable integration, improve care satisfaction and equity are one or a mix of 1) telehealth, 2) care coordination, 3) case management, 4) partnerships with MND associations, and/or 5) MND helpline.
 Conclusion: This review highlights a range of practices of integrated care that are not universal and predominantly practiced in high income countries. Adapting delivery of model of care to stage and duration of MND, and differing expectations, needs and priorities of plwMND and caregivers, is a common theme throughout. There has been greater uptake in telehealth and technology to support the equitable delivery of integrated approaches to care, with rapid development in this area during COVID 19 pandemic.
 

OPPORTUNITIES AND BARRIERS IN INTEGRATING PALLIATIVE CARE SERVICES INTO PERMANENT SUPPORTIVE HOUSING

Abstract Despite well-known inequities in rates of serious illness and premature mortality among people experiencing homelessness, as well as the unique biopsychosocial and spiritual care needs of people with homelessness histories, there is a lack of translational research focused on palliative care service delivery within permanent supportive housing. This presentation will present data from the Research, Action, & Supportive Care at Later-life for Unhoused People (RASCAL-UP study) to describe the current practices, perceived barriers, and recommendations in providing support to older permanent supportive housing residents during serious illness and end-of-life. Through a thematic analysis of interviews with direct care providers (n=30) across multiple care settings, themes were identified: 1) the importance of on-site relationships; 2) cross-sector collaboration barriers; 3) interdisciplinary communication barriers within permanent supportive housing teams; 4) environmental and spatial considerations; and 5) missing levels of care between supportive housing and higher levels of medical care. From these results, we put forth recommendations for translational research, supportive housing policy, and capacity-building efforts for interdisciplinary and cross-sector healthcare and housing teams.

Core Palliative Care Research Competencies Framework for Palliative Care Clinicians.

Background: Understanding the principles and practice of research by health care professionals helps to improve the evidence base for palliative care practice and service delivery. Research is a core competency in palliative care that enables the identification and addressing of problems for patients and their families, establishes best practice and improves ways to manage pain, other symptoms, and concerns. This work was undertaken in the research for all palliative care clinicians (RESPACC) Erasmus+ project. Aim: To identify and develop a set of core research competencies within a structured framework for all members of the multidisciplinary palliative team. Design: A multi-method approach was used including rapid review of literature, Nominal Group Technique, and expert consultation. A quiz to self-assess research competencies outlined within the Framework was produced. Results: The Framework includes 17 competencies organized in 7 domains: The clinical context, Scientific thinking and research design, Ethics and regulatory framework for research, Study and site management, Data management and informatics, Communication and relationships, and Research leadership. In the consultation process 6 of the 17 competencies were considered as required by each individual team member, and 3 to be present within the palliative care team. Conclusion: Using a multi-method approach, the first Palliative Care Research Framework identifying core research competencies for palliative care clinicians has been developed. The aim of the framework was not to transform palliative care clinicians into researchers, but to ensure that clinicians understand the important role of research and its integration into clinical practice.

Palliative care in Malawi: a scoping review

BackgroundUniversal access to palliative care remains a distant goal in many low resource settings, despite the growing evidence of its benefits. The unmet need for palliative care is evident in Africa, but great strides in palliative care development have occurred in several African countries. Located in sub-Saharan Africa, Malawi has been regarded as an exemplar of progress in this area that is achievable in a low resource region. This scoping review examined the literature on the development and state of palliative care in Malawi according to the pillars of health care policy, medicine availability, education, implementation, research activity, and vitality of professionals and advocates.MethodsA scoping review was conducted of the MEDLINE, Embase, Global Health, CINAHL, Web of Science and PsycINFO databases, as well as grey literature sources. Articles were included if they explored any aspect of palliative care in Malawi.Results114 articles were identified that met the inclusion criteria. This literature shows that Malawi has implemented diverse strategies across all pillars to develop palliative care. These strategies include creating a national stand-alone palliative care policy; integrating palliative care into the curricula of healthcare professionals and developing training for diverse service providers; establishing systems for the procurement and distribution of opioids; implementing diverse models of palliative care service delivery; and launching a national palliative care association. Malawi has also generated local evidence to inform palliative care, but several research gaps were identified.ConclusionsMalawi has made considerable progress in palliative care development, although initiatives are needed to improve medicine availability, access in rural areas, and socioeconomic support for patients and their families living with advanced disease. Culturally sensitive research is needed regarding the quality of palliative care and the impact of therapeutic interventions.

A Review of Palliative Care Service Delivery Models and Patient Outcomes for Adults with Cancer in Selected East and Southeast Asian Countries

Cancer is one of the key leading causes of deaths worldwide, with a disproportionately high burden in Asia in terms of incidence and mortality. Guidelines and recommendations published by the World Health Organization (WHO) state palliative care as an essential service for patients with cancer and other chronic diseases. Currently, there is extensive evidence regarding different models of palliative care delivery. However, development of palliative care services remains fragmented in Asia, and more research is needed to synthesize available models of care in this region and provide the latest evidence-based information for healthcare providers. This narrative review identified 11 peer-reviewed studies published after 2017 that reported both on models of palliative care service delivery and outcomes for adult patients with cancer in selected East and Southeast Asian countries. This review is beneficial by providing a detailed summary of the models of care adopted by these countries, and their impact on patient outcomes. It is hoped that the evidence will also generate momentum for continued conversation around palliative care development in Asia.

Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers.

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers to palliative care across two pediatric centers to (1) examine differences between trainees and faculty and (2) compare these data with previous studies. Methods: A mixed-methods study was conducted in fall 2021 among pediatric trainees and faculty physicians at three pediatric hospitals in two pediatric centers in the western United States. Surveys were distributed through hospital listservs and analyzed descriptively and through inductive thematic analysis. Results: There were a total of 268 participants: 50 trainees and 218 faculty physicians. Of the trainees, 46% (23) were fellows and 54% (27) were pediatric residents. Trainees and faculty reported the same four most common barriers, which were consistent with previous studies: family not ready to acknowledge an incurable condition (64% trainees and 45% faculty); family preference for more life-sustaining therapies than staff (52% and 39%); uncertain prognosis (48% and 38%); and parent discomfort with possibility of hastening death (44% and 30%). Other barriers commonly reported included time constraints, staff shortages, and conflict among family about treatment goals. Language barriers and cultural differences were also cited. Conclusions: This study examining palliative care across two pediatric centers suggests that providers' perceptions of family preferences and understanding of illness persist as barriers to the delivery of pediatric palliative care services. Future research should examine family-centered and culturally mindful interventions to better elucidate family perspectives on their child's illness to align care.

779 Utilization of Palliative Care in Patients Succumbing to Primary Burn Injury

Abstract Introduction Burn injury is associated with significant morbidity and mortality. Access to palliative care (PC) is variable, and many patients who die after burns do not receive specialized PC consultation. We conducted a retrospective nation-wide study of patients admitted with a primary diagnosis of burn injury who died prior to hospital discharge to identify factors associated with receiving palliative care. Methods Data from the HCUP National Inpatient Sample (2016-2019) were queried to identify inpatient deaths among adults ≥18 admitted with a primary ICD-10 burn diagnosis. Differences in demographic and clinical characteristics were assessed between patients who did and did not receive PC using chi-square tests and multivariable Poisson regression on data weighted to represent the national population. Baux scores were calculated by adding age and percentage of body burnt based upon ICD-10 code categorizations; a revised Baux score was calculated for inhalation injury. Results Of 98,845 patients admitted to inpatient care from 2016 to 2019 with a primary burn diagnosis, 3250 (3.3%) died prior to discharge. 1390 (42.8%) of patients who died had a PC encounter. Patients who did not receive PC were younger (mean 58.7 vs. 63.9, p=0.0002), had lower Baux scores (mean 104.6 vs. 112.4, p=0.002) and a longer length of stay (LOS) (mean 19.3 vs. 13.3, p=0.008). Controlling for age, sex, Baux score and LOS, White patients had a 35% greater likelihood of receiving PC than Black patients (incidence rate ratio, IRR 1.35, 0.95 CI (1.02,1.79)). All else held constant, patients aged 70-79 had the greatest likelihood (68%, IRR 1.68, 0.95 CI (1.31,2.15)) of receiving PC versus patients < 60 years old. Urban teaching hospitals had the highest percentage of burn patients (92.7% vs. 5.2% non-teaching vs. 2.1% rural) and the highest rate of providing PC (43% vs. 30% non-teaching vs. 20% rural, p=0.446) to patients that died. Insurance type (Medicare, Medicaid, Private, and other) did not correlate with receiving PC (p=0.054). The number of diagnoses, procedures and gender did not differ between deceased patients who did and did not receive PC. Conclusions More than half of burn patients who died prior to discharge did not receive a palliative care consultation. Unsurprisingly, older patients were more likely to receive PC. Patients who did not receive PC were more likely to have been younger, Black, have had lower Baux scores or to have been treated in non-urban non-teaching hospitals. The high Baux score of the younger patients (104.6) is associated with significant risk of death; this population might benefit from PC consultation. The discrepancy between White and Black patients in the delivery of PC services is striking. Further study is necessary to identify not only those burn patients most likely to benefit from PC but also the barriers to receiving palliative care in burn injury. Applicability of Research to Practice Demonstrates the inconsistency of palliative care use in the burn population

Co-design and prototype development of the ‘Ayzot App’: A mobile phone based remote monitoring system for palliative care

Background: Palliative care, a recognised component of care by the World Health Organization is poorly developed in low- and middle-income countries. Mobile phone technology, an effective way to increase access and sustainability of healthcare systems globally, has demonstrated benefits within palliative care service delivery, but is yet to be utilised in Ethiopia. Aim: To co-design, develop and evaluate a mobile phone based remote monitoring system for use by palliative care patients in Ethiopia Design: Two-phase co-design approach comprising multiple methods that is stakeholder interviews, focus groups, user-co-creation activities and healthcare worker prioritisation discussions 2019–2020. Phase-1 interviews (n = 40), Phase-2 focus groups (n = 3) and interviews (n = 10). Setting/Participants: Hospice Ethiopia and Yekatit 12 Medical College Hospital: healthcare workers, palliative care patients, family carers & software-developers. Results: Co-design activities lead to development of the prototype ‘Ayzot’ application, which was well received and reported to be easy to use. Patients, and family caregivers saw provision of self-care information and symptom management as a key function of the App and expressed very positive attitudes towards such information being included. Healthcare workers found the App offered service benefits, in terms of time and cost-savings. Conclusion: This paper provides a detailed example of the development and design of a prototype remote monitoring system using mobile phone technology for palliative care use in Ethiopia. Further development and real-world testing are required, to not only understand how it acts within usual care to deliver anticipated benefits but also to explore its effectiveness and provide cost estimates for wider implementation.

Personalized Palliative and Survivorship Care for Patients With Metastatic Cancer Treated With Radiation Therapy.

While the benefits of early palliative care for patients with metastatic cancer are well established, cancer survivorship remains inadequately integrated into the care of patients with distant metastases. Moreover, the optimal model of care delivery is poorly defined. A prognostic model previously developed and validated at Good Samaritan University Hospital identified four groups of patients with metastatic solid tumor malignancy having very favorable, favorable, standard or unfavorable prognoses with median survival of 31, 14, 4 and 1 month, respectively. This framework holds promise for the personalized delivery of supportive, palliative and survivorship care services in the context of radiation therapy. We review the published literature providing the rationale for a novel multidisciplinary care model where the radiation oncology Clinical Nurse Specialist identifies and coordinates interventions to address unmet physical and emotional issues faced by survivors with metastatic cancer with the goal of improving quality of life and overall survival.

Promoting Prognostic Understanding and Health Equity for Patients With Advanced Liver Disease: Using “Best Case/Worst Case”

Promoting Prognostic Understanding and Health Equity for Patients With Advanced Liver Disease: Using “Best Case/Worst Case”

Providers' Competencies and Management Practices for Traditional Palliative Cancer Care Service Delivery in Kenya.

Many people in developing countries are struggling with chronic diseases yet traditional health services remain under-utilized in the quest for universal health care. Thousands patronize these outlets for care yet little is known about provider's competence and how these competencies inform palliative care decisions and practices. The study documented traditional health practitioners (THPs) competencies and practices for traditional palliative cancer care service delivery in Kenya. This study utilized mixed-methods design and was undertaken in major towns across Kenya. A total of 201 Traditional health practitioners were purposely sampled, and interviewed. Five in-depth interviews and 6 focus group discussions were conducted. Quantitative data were analyzed using SPSSv22 while thematic and discourse analysis was carried out for qualitative data. Majority (92.7%) of the THPs provided general traditional health services. Nearly half of the respondents (47.7%, n = 92) stated that they had received their knowledge and abilities through divine gifting, 71 (36.8%) lineage, 61 (31.6%) apprenticeship, and 39 (20.2%) formal study. Palliative care was determined by patient state and followed consultation with caregivers for 165 (85.5%) of respondents. For 160 respondents (83%), management practices involved a mix of patient examination, conventional medical tests, herbal medicine administration, follow-up or referral. Positive feedback consisted of symptom reduction and function recovery. Core competencies identified include: knowledge acquisition and specialization, assessment, diagnosis and disclosure, decision making, treatment, follow-up, and referral. Traditional palliative care providers share common health-related beliefs, practices and abilities that influence how they approach and make decisions regarding the health management of their patients, despite marked ethnic diversity. The shared pathways offer a chance to develop a cogent traditional palliative care service delivery model and health policy framework to promote its integration within the health workforce. The leading unmet requirements are knowledge of intellectual property rights, disclosure frameworks, and ethical regulation principles.

Expectations and barriers to the utilization of specialist palliative care services among persons living with cancer in Ghana: an exploratory qualitative study.

The need for palliative care among patients living with cancer is increasing globally. This need is far greater in resource-constrained settings like Ghana where there is a high unmet need for palliative care services. Consequently, there are lapses in the current palliative care regime, thus, resulting in suboptimal utilization. The study aims to explore patients living with cancer's expectations of palliative care services and examine the barriers that impede palliative care utilization. Descriptive exploratory qualitative design. A total of 15 patients living with cancer and receiving treatment in a tertiary health facility were purposively sampled to participate in this study. Semi-structured interviews were conducted. The data were transcribed and inductively analysed following Collaizi's qualitative analysis framework. From the analysis, the findings were grouped under two main categories: perceived expectations and barriers to utilizing palliative care. The participants expected to receive meaningful communication about their condition and prognosis; they also expected to be actively involved in palliative care decision-making. Regarding the barriers, the following themes emerged: financial constraints, unfavourable health appointment schedules, problems with the distance to the health facility, poor referral and follow-up from oncology specialists and being unaware of the availability of palliative care services. In conclusion, there is a need to actively involve patients and their families in all decision-making along the continuum of palliative care service delivery. The study underscores the need for Ghana to implement an integration of palliative care services in primary healthcare facilities to avert the challenges that distance to tertiary healthcare facilities poses to palliative care utilization. Service providers must implement awareness programmes to enable patients to better comprehend palliative care services.

The use of and need for data and information by health professionals supporting the delivery of palliative cancer care services in sub-Saharan Africa: A qualitative study.

The ability to develop and evaluate approaches to the management of advanced cancer in sub-Saharan Africa is limited by the lack of local, reliable and valid data to ensure that practice is evidence-based, replicable and reflects the needs of the population served. A secondary qualitative analysis of in-depth interviews with 59 health professionals delivering palliative cancer care in Nigeria, Uganda and Zimbabwe were conducted to determine the use and needs for data and information for patient care and service delivery. Framework analysis was used, informed by a conceptual model for data use in low and middle-income countries. Three meta-themes include: (1) Current practice in data gathering and use; (2) Gaps for capturing, storing information and supporting communication, and; (3) Needs and opportunities for data use. Deficits in current data access and use were identified, alongside targets for improving the quality, accessibility and utility of data to inform the development of palliative cancer care. The availability and use of relevant and reliable data relating to the current provision of palliative cancer care are requisite for the contextually appropriate and effective development of health services. The requirements and constraints articulated by participants can guide future development and optimisation of digital health approaches for palliative cancer care in the participating countries, with relevance to the wider sub-Saharan Africa region.