Routine Data and Minimum Datasets for Palliative Cancer Care in Sub-Saharan Africa: Their Role, Barriers and Facilitators

Allsop, Matthew J.; Kabukye, Johnblack K; Powell, Richard A.; Namisango, Eve

doi:10.1007/978-3-030-54526-0_15

Cited by 4 publications

(5 citation statements)

References 35 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…These are the countries in which the greatest proportional rise in serious health-related suffering is projected to occur [ 7 ]. Alongside efforts to, for example, utilise routinely collected datasets to determine the temporal nature of initiating and subsequent duration of palliative care in LMICs [ 194 ], efforts to better understand optimal timing and provision of palliative care in these settings is required. It is not appropriate to extrapolate the existing evidence for early referrals, largely from high-income settings, to countries and settings in which palliative care is critically absent and largely a poverty-reduction intervention to lessen significant costs that can be absorbed by the individual, family and local community arising from incurable illnesses [ 195 ].…”

Section: Discussionmentioning

confidence: 99%

Duration of palliative care before death in international routine practice: a systematic review and meta-analysis

Jordan

Allsop

ElMokhallalati

et al. 2020

BMC Med

Self Cite

View full text Add to dashboard Cite

Background Early provision of palliative care, at least 3–4 months before death, can improve patient quality of life and reduce burdensome treatments and financial costs. However, there is wide variation in the duration of palliative care received before death reported across the research literature. This study aims to determine the duration of time from initiation of palliative care to death for adults receiving palliative care across the international literature. Methods We conducted a systematic review and meta-analysis that was registered with PROSPERO (CRD42018094718). Six databases were searched for articles published between Jan 1, 2013, and Dec 31, 2018: MEDLINE, Embase, CINAHL, Global Health, Web of Science and The Cochrane Library, as well undertaking citation list searches. Following PRISMA guidelines, articles were screened using inclusion (any study design reporting duration from initiation to death in adults palliative care services) and exclusion (paediatric/non-English language studies, trials influencing the timing of palliative care) criteria. Quality appraisal was completed using Hawker’s criteria and the main outcome was the duration of palliative care (median/mean days from initiation to death). Results One hundred sixty-nine studies from 23 countries were included, involving 11,996,479 patients. Prior to death, the median duration from initiation of palliative care to death was 18.9 days (IQR 0.1), weighted by the number of participants. Significant differences between duration were found by disease type (15 days for cancer vs 6 days for non-cancer conditions), service type (19 days for specialist palliative care unit, 20 days for community/home care, and 6 days for general hospital ward) and development index of countries (18.91 days for very high development vs 34 days for all other levels of development). Forty-three per cent of studies were rated as ‘good’ quality. Limitations include a preponderance of data from high-income countries, with unclear implications for low- and middle-income countries. Conclusions Duration of palliative care is much shorter than the 3–4 months of input by a multidisciplinary team necessary in order for the full benefits of palliative care to be realised. Furthermore, the findings highlight inequity in access across patient, service and country characteristics. We welcome more consistent terminology and methodology in the assessment of duration of palliative care from all countries, alongside increased reporting from less-developed settings, to inform benchmarking, service evaluation and quality improvement.

show abstract

Section: Discussionmentioning

confidence: 99%

Duration of palliative care before death in international routine practice: a systematic review and meta-analysis

Jordan

Allsop

ElMokhallalati

et al. 2020

BMC Med

Self Cite

View full text Add to dashboard Cite

show abstract

“…The receipt and use of timely data afforded by remote symptom monitoring-direct from the patient or their caregiver-are necessary to inform efforts to improve the quality of services and measure impact [86,87]. Useful, relevant, and reliable data are needed to characterise the current symptom and disease burden experienced by people living with cancer in SSA [85] and understand the extent to which service delivery is aligned with the needs of the population being served [30]. Furthermore, access to timely, reliable, and practical health information is a prerequisite for delivering universal health coverage [88].…”

Section: Discussionmentioning

confidence: 99%

“…Remote symptom monitoring approaches could provide a means of developing methodologically rigorous processes for gathering data to develop the evidence base specific to palliative cancer care in SSA. This could include generating accurate and real-time data on symptoms and disease burden for patients with advanced cancer, alongside strengthening underpinning data to inform clinical trials [84] and routine care delivery [85]. Furthermore, there may be value in aggregate and population-level summaries of data gathered through remote symptom monitoring approaches.…”

Section: Measure Health System Benefit(s) and Integrationmentioning

confidence: 99%

Remote Symptom Monitoring to Enhance the Delivery of Palliative Cancer Care in Low-Resource Settings: Emerging Approaches from Africa

Salako,

Enyi,

Miesfeldt

et al. 2023

IJERPH

View full text Add to dashboard Cite

This paper brings together researchers, clinicians, technology developers and digital innovators to outline current applications of remote symptom monitoring being developed for palliative cancer care delivery in Africa. We outline three remote symptom monitoring approaches from three countries, highlighting their models of delivery and intended outcomes, and draw on their experiences of implementation to guide further developments and evaluations of this approach for palliative cancer care in the region. Through highlighting these experiences and priority areas for future research, we hope to steer efforts to develop and optimise remote symptom monitoring for palliative cancer care in Africa.

show abstract

“…It is also important to ensure that such data are captured across the disease trajectory, from diagnosis and treatment to remission, survivorship or end-of-life care, and bereavement. 56 Access to essential medicines …”

Section: Forward-looking Prioritized Agendamentioning

confidence: 99%

Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers

Namisango

Bhakta

Wolfe

et al. 2021

JCO Global Oncology

Self Cite

View full text Add to dashboard Cite

PURPOSE The burden of cancer disproportionately affects low- and middle-income countries. Low 5-year survival figures for children with cancer in low-income countries are due to late presentation at diagnosis, treatment abandonment, absence of sophisticated multidisciplinary care, and lack of adequate resources. The reasons for late presentation are partly due to limited awareness of cancer symptoms, high treatment costs, and facility-level barriers to timely access to treatment. Given the systemic challenges, the regional need for palliative oncology care for children care is high. Despite the enormity of the need for palliative oncology for children with cancer in Africa, its level of development remains poor. This paper presents the evidence on the status of palliative oncology care for children in sub-Saharan Africa. METHODS This review provides an overview of the current status of palliative oncology care for children in sub-Saharan Africa, using the WHO building blocks for health systems strengthening as reference points, before proposing a forward-looking prioritized agenda for its development. RESULTS We noted that survival rates for children with cancer remain much poorer in Africa compared with developed countries and palliative oncology care resources are scant. Our results also show low coverage for palliative oncology care services for children, lack of a critical mass of health workers with the skills to deliver the care, a lack of robust documentation of the burden of cancer, widespread lack of access to essential controlled medicines, limited funding from government and limited coverage for palliative oncology care in most cancer control plans. CONCLUSION This review highlights priority areas for action that align to the WHO health system building blocks for strengthening health systems.

show abstract

Routine Data and Minimum Datasets for Palliative Cancer Care in Sub-Saharan Africa: Their Role, Barriers and Facilitators

Cited by 4 publications

References 35 publications

Duration of palliative care before death in international routine practice: a systematic review and meta-analysis

Duration of palliative care before death in international routine practice: a systematic review and meta-analysis

Remote Symptom Monitoring to Enhance the Delivery of Palliative Cancer Care in Low-Resource Settings: Emerging Approaches from Africa

Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers

Contact Info

Product

Resources

About