This week, we are beyond thrilled to welcome Julia Challinor, Jennifer Geel and Neil Ranasinghe from SIOP's Pediatric Oncology International Network for Training and Education Group.
What are the results?
What
is happening right now?
Where
are we surveying next?
How can I find out more about this project?
What is happening next?
How to get involved?
Up until recently, we knew very little
about what was happening in the land of African paediatric oncology. The SIOP
PODC Education and Training Working Group had created a large database of
educational opportunities and experts willing to give their services for free,
but we knew we weren’t reaching the people who needed those opportunities.
Through a remarkable confluence of events, Eric Bouffet, immediate past SIOP
President, managed to secure a My Child Matters grant from the Sanofi
Espoir Foundation and with the support of the board and SIOP Africa
members, we started to find out more about the situation for children with
cancer in Africa.
We knew people in many countries – Morocco,
Ghana, Kenya, Tanzania, South Africa – and we knew some of what they were
doing. Unverified statistics have been shared widely, but there were too many
gaps in our knowledge. We needed to address that quickly, so our main aims were
to:
- use the survey data to advocate for more local resources in partnership with the World Health Organisation (WHO) Global Initiative for Childhood Cancer (GICC)
- create a baseline of
the situation in Africa, e.g., where and with what resources
children/adolescents are diagnosed, treated, surviving, etc.
- create an online map for clinicians, families, and other stakeholders showing where childhood cancer hospitals/resources are located
What are the results?
We were lucky enough to get over 500 responses, and
more are still coming in. The level of detail we have received varies across
the continent, but in many countries, childhood cancer access and treatment
options are even worse than we initially thought.
We now know which countries are not treating
children with cancer at all; don’t have even one full-time paediatric
oncologist; have very few dedicated paediatric oncology nurses; struggle with
consistent supplies of chemotherapy; have good NGO support; and have a
reasonable number of facilities offering treatment.
What
is happening right now?
We are currently surveying Latin America from
Mexico to Chile. This is well underway with support from the SIOP Continental
President for Latin America. If you work in Latin America with
children/adolescents with cancer please take this survey. It is
available in Spanish, Portuguese, English and French.
Where
are we surveying next?
The next region under study is the ASEAN group
of countries. Look out for requests to complete the survey if you are working
in this region. We will be surveying the following countries:
Phase 1: Cambodia Lao PDR Myanmar Thailand Vietnam
Phase 2: Brunei Darussalam Indonesia Malaysia, Philippines Timor-Leste PNG
How can I find out more about this project?
· Watch a short
animation about the project produced by Mark Zobeck and his team at Global Health
and Childhood Cancer (https://www.youtube.com/watch?v=rPpSPCovwnI)
· Hear Jennifer Geel and
Mark Zobeck speak about the survey in another great podcast from GHCC https://www.ghccpod.com/19-the-siop-global-mapping-project/
· View the PowerPoint
slides from the presentation that Jennifer Geel gave at SIOP Lyon. These slides
go into detail about the history, the methodology, and what we have documented
across Africa. https://siop-online.org/wp-content/uploads/2020/01/SIOP-Global-mapping-Lyon-24-Oct-201911h00.pdf
· See the country summary
sheets for Ghana and Zambia, and read the survey FAQs here
All of the above are available here - https://siop-online.org/globalmapping/
What is happening next?
The next wave involves creating and maintaining
country summary sheets for individual countries, starting with WHO
GICC focus countries. We will be providing data to WHO, NGOs, and
governments involved with the GICC
initiative as requested to advocate for more resources. We are already
preparing articles for publication about the childhood cancer treatment
situation across Africa. In progress is an online map showing a subset of the
survey data, and plans to make this available to everyone with access to the
SIOP and CancerPointe websites.
How to get involved?
We are actively looking for co-authors to help
write up the papers for publication. If you would like to be a part of this
part of the project, please contact Jennifer Geel (email address below).
If you work in Latin America please take the
survey. It is available in Spanish, English, French and
Portuguese.
If you have any questions, or want to get involved please don’t hesitate to get in touch. Neil.Ranasinghe@refinitiv.com, Jennifer.a.Geel@gmail, Jmchallinor@gmail.com
Twitter: #MapSIOP
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