Palliative care and catastrophic costs in Malawi after a diagnosis of advanced cancer: a prospective cohort study

Bates, Maya Jane; Gordon, Miriam R P; Gordon, Stephen B.; Tomeny, Ewan; Muula, Adamson S; Davies, Helena; Morris, Claire; Manthalu, Gerald; Namisango, Eve; Masamba, Leo; Henrion, Marc; MacPherson, Peter; Squire, S Bertel; Niessen, Louis

doi:10.1016/s2214-109x(21)00408-3

Cited by 21 publications

(21 citation statements)

References 27 publications

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“…Introducing workplace policies to protect employment for people in informal caring roles such as flexible hours and paid/ partially paid leave/ carers' allowance will be of benefit for people taking on the caring role. In a 2021 study, palliative care services were shown to limit financial toxicity and improve quality of life [62]. By improving access to palliative care services and ensuring that palliative care is part of universal health coverage, households can be protected from catastrophic costs.…”

Section: Plos Global Public Healthmentioning

confidence: 99%

The roles and experiences of informal carers providing care to people with advanced cancer in Africa—A systematic review and critical interpretive analysis

Gambe

Clark

Meddick-Dyson

et al. 2023

PLOS Glob Public Health

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There is an increasing prevalence of cancer in Africa with approximately 80% of cancers diagnosed at an advanced stage. High out-of-pocket healthcare costs and overstretched health systems lead to heavy reliance on informal carers for cancer care. This study aims to explore the roles and experiences of informal carers including the impact of cancer care on individuals and communities and support available for carers. We carried out a systematic review following PRISMA reporting guidelines and used critical interpretative synthesis to identify themes and develop an informal carers’ experience framework. We searched nine databases and screened 8,123 articles from which 31 studies were included in the review. Most studies were from Sub-Saharan Africa (29/31, 94%), particularly Uganda (9, 29%). Carers were mostly women, aged 30–40 years, and siblings, spouses, or children. Caring roles included care coordination, fundraising, and emotional support. Caring was time-consuming with some carers reporting 121 hours/week of caring, associated with the inability to pursue paid work and depression. Four themes demonstrated carers’ experiences: 1) intrapersonal factors: strong sense of familial obligation, and grappling with gender roles, 2) interpersonal factors: impact of a cancer diagnosis on households, changing social and sexual relationships, 3) community factors: navigating cultural norms on nature and location of care, and 4) health system influences: barriers to accessing healthcare services, and tensions between traditional and biomedical medicine. These themes aligned with Bronfenbrenner’s social ecological model which aided our development of a framework for understanding informal carers’ experiences’. Our review highlights multifaceted roles and experiences of informal carers in Africa, amidst cultural and community impacts. Carers experience a strong obligation and willingly undertake the role of carer, but at the expense of their social, economic, and psychological wellbeing. Support for carers, including flexible working hours/ carers’ allowance, should be incorporated as part of universal health coverage.

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Section: Plos Global Public Healthmentioning

confidence: 99%

The roles and experiences of informal carers providing care to people with advanced cancer in Africa—A systematic review and critical interpretive analysis

Gambe

Clark

Meddick-Dyson

et al. 2023

PLOS Glob Public Health

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“…One of the key pillars of universal health coverage is addressing equity (through prioritizing the worst off) and financial risk protection [38]. Children with cancer fall under the worst-off categories as they face a large individual-level disease burden, and their guardians are at high risk of encountering impoverishing health expenditure, as the cost of cancer care (direct and indirect medical and indirect non-medical costs) is high [38][39][40][41]. The high share of drugs and supplies costs in our study could also indicate the potential cost burden to affected households, if not made continuously available with a large subsidy or cost exemption through public funding.…”

Section: Plos Onementioning

confidence: 99%

Cost of childhood cancer treatment in Ethiopia

Mirutse,

Palm,

Tolla

et al. 2023

PLoS ONE

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Background Despite the recent interest in expanding pediatric oncology units in Ethiopia, reflected in the National Childhood and Adolescent Cancer Control Plan (NCACCP), little is known about the cost of running a pediatric oncology unit and treating childhood cancers. Methods We collected historical cost data and quantity of services provided for the pediatric oncology unit and all other departments in Tikur Anbessa Specialized Hospital (TASH) from 8 July 2018 to 7 July 2019, using a provider perspective and mixed (top-down and bottom-up) costing approaches. Direct costs (human resources, drugs, supplies, medical equipment) of the pediatric oncology unit, costs at other relevant clinical departments, and overhead cost share are summed up to estimate the total annual cost of running the unit. Further, unit costs were estimated at specific childhood cancer levels. Results The estimated annual total cost of running a pediatric oncology unit was USD 776,060 (equivalent to USD 577 per treated child). The cost of running a pediatric oncology unit per treated child ranged from USD 469 to USD 1,085, on the scenario-based sensitivity analysis. Drugs and supplies, and human resources accounted for 33% and 27% of the total cost, respectively. Outpatient department and inpatient department shared 37% and 63% of the cost, respectively. For the pediatric oncology unit, the cost per OPD visit, cost per bed day, and cost per episode of hospital admission were USD 36.9, 39.9, and 373.3, respectively. The annual cost per treated child ranged from USD 322 to USD 1,313 for the specific childhood cancers. Conclusion Running a pediatric oncology unit in Ethiopia is likely to be affordable. Further analysis of cost effectiveness, equity, and financial risk protection impacts of investing in childhood cancer programs could better inform the prioritization of childhood cancer control interventions in the Ethiopia Essential Health Service Package.

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“…That said, catastrophic out of pocket expenditures remain a problem for palliative care patients in Malawi. For example, research conducted in patients with advanced cancer demonstrates a high prevalence of catastrophic and out of pocket expenditure [ 29 ].…”

Section: Introductionmentioning

confidence: 99%

Measuring palliative care integration in Malawi through service provision, access, and training indicators: the Waterloo Coalition Initiative

Kiyange,

Atieno,

Luyirika

et al. 2024

BMC Palliat Care

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Background Fewer than 1 in 20 people on the African continent in need of palliative care receive it. Malawi is a low-income country in sub-Saharan Africa that has yet to achieve advanced palliative care integration accompanied by unrestricted access to pain and symptom relieving palliative medicines. This paper studied the impact of Malawi’s Waterloo Coalition Initiative (WCI) – a local project promoting palliative care integration through service development, staff training, and increased service access. Methods Interdisciplinary health professionals at 13 hospitals in southern Malawi were provided robust palliative care training over a 10-month period. We used a cross-sectional evaluation to measure palliative care integration based on 11 consensus-based indicators over a one-year period. Results 92% of hospitals made significant progress in all 11 indicators. Specifically, there was a 69% increase in the number of dedicated palliative care rooms/clinics, a total of 253 staff trained across all hospitals (a 220% increase in the region), substantive increases in the number of patients receiving or assessed for palliative care, and the number of hospitals that maintained access to morphine or other opioid analgesics while increasing the proportion of referrals to hospice or other palliative care programs. Conclusion Palliative care is a component of universal health coverage and Sustainable Development Goal 3. The WCI has made tremendous strides in establishing and integrating palliative care services in Malawi with notable progress across 11 project indicators, demonstrating that increased palliative care access is possible in severely resource-constrained settings through sustained models of partnership at the local level.

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Palliative care and catastrophic costs in Malawi after a diagnosis of advanced cancer: a prospective cohort study

Cited by 21 publications

References 27 publications

The roles and experiences of informal carers providing care to people with advanced cancer in Africa—A systematic review and critical interpretive analysis

The roles and experiences of informal carers providing care to people with advanced cancer in Africa—A systematic review and critical interpretive analysis

Cost of childhood cancer treatment in Ethiopia

Measuring palliative care integration in Malawi through service provision, access, and training indicators: the Waterloo Coalition Initiative

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