Cancer Clinical Trial
Official title:
Estimating the Global Need for Palliative Care for Children: A Cross Sectional Analysis
A cross-sectional analysis of prevalence data from a stratified sample of 23 countries used to estimate the global need for palliative care for children aged 0-19 years. Prevalence data, from the Institute for Health Metrics and Evaluation, was for 12 major diagnostic groups needing children's palliative care according to WHO and UNICEF guidelines.
There is growing awareness that there are major gaps in access to children's palliative care
(CPC) worldwide. Adults have a greater likelihood of receiving palliative care than
children. Growing access to treatment services, and extended periods of wellness have led to
some changes in the nature of the palliative care services required. Children are more
resilient and more likely to require CPC for longer periods than adults.
It is against this background that UNICEF and the International Children's Palliative Care
Network (ICPCN), in collaboration with national palliative care associations, began a joint
analysis to develop methods to assess critical needs and gaps in CPC. The initial
assessment, conducted in Kenya, South Africa and Zimbabwe, aimed to analyse existing
secondary data on palliative care to estimate the palliative care need amongst children and
explore key gaps in the response with service providers. A report on this research, the
methods used, and the results for South Africa was published in 2014.
There is a lack of information regarding the actual need for palliative care for children,
and assessment is a complicated process, due to uncertainty about the patient population and
the nature of palliative care for children. Although there have been some studies focusing
on the status of CPC in sub-Saharan Africa and the United Kingdom, there are differences in
the scope and approach to the present study. A systematic review of the provision of CPC
around the world, noted that over 65% of countries have no recognised CPC service provision,
and concluded that service provision for CPC is not meeting the need in the majority of the
world.
Generally, studies estimating need for palliative care for children are based on mortality
statistics for chronic, incurable illnesses. Estimates focused on end-of-life care, as in
the Global Atlas of Palliative Care at the End of Life do not account for the children that
need palliative care well before the last year of life and underestimate the need.
The World Health Organization defines palliative care for children as a special, albeit
closely related field to adult palliative care. An effort to define the many diseases and
conditions requiring CPC a directory was published in 2013 with 376 potential diagnostic
labels though the majority of deaths were from a small number.
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Time Perspective: Retrospective
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