It Takes a Village: Bringing Palliative Care to Ethiopia.

In Ethiopia, there is a great need for culturally relevant, sustainable palliative care. Profound poverty and limited health care resources magnify the impact of disease in Ethiopia, one of the poorest countries in the world. The impacts of high burden of disease and poor access to health care include physical suffering, and detrimental economic effects. Thus, the potential for palliative care to improve health care allocation and reduce suffering is substantial. An immediate action could include harnessing the infrastructure of the iddir, which are centuries-old, indigenous neighborhood organizations that provide care and support for families during the time of a death. We propose a model of community-based palliative care instantiated within iddirs, in which they are trained as volunteers to deliver basic palliative care. Shifting the gaze of global health research towards local solutions in Ethiopia may reveal sustainable, effective strategies to improve care for millions in this vulnerable 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.

Early palliative care in newly diagnosed cancer in Ethiopia: feasibility randomised controlled trial and cost analysis.

OBJECTIVES: Globally, cancer deaths are rising. In low-and-middle-income countries, there is a gap in access to palliative care (PC). We designed a feasibility trial to study the initiation of early PC in patients with cancer in Addis Ababa, Ethiopia. METHODS: A randomised controlled trial (RCT) of standard cancer care versus standard cancer care plus in-home PC was conducted. Follow-up was at 8 and 12 weeks. Primary outcomes were: (1) feasibility, (2) patient-reported PC outcomes (African Palliative Care Association Palliative Outcome Scale (APCA POS)), and (3) costs. RESULTS: Of 95 adults randomised (mean age 49.5 years; 66% female), 27 completed 3 study visits. Of these, 89% had stage III or IV disease. Recruitment was feasible, but attrition was high. APCA POS use was feasible, with significant within-arm improvements: 24% versus 18% reduction (p<0.0002, p<0.0025) in PC versus standard care, respectively. Standard care subjects reported higher out-of-pocket payments (5810 Ethiopian birr) (ETB) and lost wages of informal caregivers (74 900 ETB), multiple times an average Ethiopian salary (3696 ETB). CONCLUSION: It is feasible to conduct an RCT of early PC for patients with cancer in Ethiopia. Retention was the biggest challenge. This study revealed opportunities to improve care, and important feasibility results to inform future, larger scale PC research in Ethiopia and beyond.

Palliative care needs and preferences of female patients and their caregivers in Ethiopia: A rapid program evaluation in Addis Ababa and Sidama zone.

INTRODUCTION: In Ethiopia there is an extensive unmet need for palliative care, while the burden of non-communicable diseases and cancer is increasing. This study aimed to explore palliative care needs and preferences of patients, their caregivers, and the perspective of stakeholders on service provision in palliative programs for women, mostly affected by cervical cancer and breast cancer. METHODS: A rapid program evaluation using a qualitative study approach was conducted in three home-based palliative care programs in Addis Ababa and Yirgalem town, Ethiopia. Female patients enrolled in the programs, and their primary caregivers were interviewed on palliative care needs, preferences and service provision. We explored the views of purposely selected stakeholders on the organization of palliative care and its challenges. Audio-taped data was transcribed verbatim and translated into English and an inductive thematic analysis was applied. Descriptive analyses were used to label physical signs and symptoms using palliative outcome scale score. RESULTS: A total of 77 interviews (34 patients, 12 primary caregivers, 15 voluntary caregivers, 16 stakeholders) were conducted. The main physical complaints were moderate to severe pain (70.6%), followed by anorexia (50.0%), insomnia, nausea and vomiting (41.2%). Social interaction and daily activities were hampered by the patients' condition. Both patients and caregivers reported that programs focus most on treatment of symptoms, with limited psychosocial, emotional, spiritual and economic support. Lack of organizational structures and policy directions limit the collaboration between stakeholders and the availability of holistic home-based palliative care services. CONCLUSIONS: Although female patients and caregivers appreciated the palliative care and support provided, the existing services did not cover all needs. Pain management and all other needed supports were lacking. Multi-sectorial collaboration with active involvement of community-based structures is needed to improve quality of care and access to holistic palliative care services.

Rationale and study design: A randomized controlled trial of early palliative care in newly diagnosed cancer patients in Addis Ababa, Ethiopia.

Patient-reported outcomes and economic aspects of Palliative Care (PC) provision in low-income countries (LIC) are under-studied. Demonstrating the economic value of PC is key to sustainability and guiding health care policy. Our preliminary data in Ethiopia demonstrated a widespread need for PC, poor access to it, and high out of pocket payments (OOP). We suspect that in this and other LIC, PC may function not only to reduce suffering but also as a poverty reduction strategy.We are conducting a randomized controlled trial of standard Oncology care versus standard Oncology care plus PC in newly diagnosed cancer patients in Addis Ababa. Ninety-seven adults presenting to Oncology Clinic will be randomized in a 1:1 ratio. Subjects receiving PC will meet with a PC provider at time of enrollment and at follow up visits in their homes. All subjects will be assessed via questionnaire at enrollment and follow-up Oncology visits at 8 ± 4 and 12 ± 4 weeks. A cost-consequence analysis will be performed, to include: patient-reported OOP and healthcare utilization, the latter to be assessed through chart adjudication. Outcomes will include change in African Palliative Care Association Palliative Outcome Score, changes in OOP and healthcare utilization.We hypothesize that the cost of home-based PC will be offset by improvements in patient-reported outcomes, decreased OOP and healthcare utilization, rendering PC cost-effective in this LIC. These findings may lead to widespread dissemination of an effective, sustainable and cost-saving public PC delivery strategy that would improve the quality of life and death for millions of people. TRIAL REGISTRATION: Clinicaltrials.gov NCT03712436.