We are getting closer to launching the survey. Translation into French nearly completed and translation into Portuguese already done. If you want to know more, or get involved please email firstname.lastname@example.org.
Updated: 29 July 2018.
The main objective of this effort is to collect information via a survey on the current landscape of paediatric oncology services around the world, and the resources available in each individual country.
The survey includes questions regarding your practice and environment and should take less than 10 minutes of your time.
This information can help SIOP, National groups and individuals in each country. By collecting this information, we will be able to describe accurately the disparity of resources available to treat children with cancer and use this data to advocate for more resources at different levels. By having regular updates, we will be able to measure the impact of our collective efforts to improve access to optimal care for children and their families. This global mapping also offers other opportunities, such as the possibility to develop collaborations between institutions or networks, to initiate twinning initiatives between centres, and to share protocols.
Our aim is to start with data collection limited to the African continent. Once this part of the project is completed, we will present the results to the SIOP community to see whether to extend this project to other continents.
We hope you will help us with this initiative. This project has the potential to benefit everyone, especially the children for whom we care. The link will be available here soon. See the Frequently asked questions below for more information about the global mapping program.
Please do not hesitate to email us, should you have any questions.
Frequently asked questions (FAQs)
1. Who can complete the survey?
2. Can SIOP provide assistance to my hospital?
The initial aim is just to map services provided in each country. Then we will determine whether SIOP as an organisation can provide assistance in terms of lobbying or advocacy. You are encouraged to become a member of SIOP to join advocacy efforts, learn more about resources that may help you and network. SIOP membership rates have been significantly reduced for people in low to middle income countries. Find out more about SIOP Membership.
3. What type of data are you looking for?
Information on access to facilities at your hospital. For example, if you have an MRI scanner at your hospital, but it is never available, or too expensive for paediatric oncology patients, then please answer NO.
4. Why are you only mapping Africa?
Africa is our first phase. We plan to cover all continents if this survey is successful. Africa is the continent where the greatest need has been identified. There are very few paediatric oncology services in Africa, and in general, survival rates of children with cancer are low.
5. Where can I find more information about the programme?
If you still have a question please email email@example.com.
6. How can I get involved?
7. Where will the data be published?
The report will be made available on the SIOP website here and https://cancerpointe.com.It will be collated into a manuscript that will be submitted to the journal Pediatric Blood and Cancer for publication.
8. When will the data be published?
A report will be available as soon as the initial phase has been completed and expected by the annual SIOP congress in November 2018.
9. Who are the people behind this?
This data is being collected by and managed by SIOP and cancerPOINTE members.
- SIOP is the only global multidisciplinary society entirely devoted to paediatric and adolescent cancer. The society has over 1000 members worldwide including doctors, nurses, other health-care professionals, scientists and researchers.
- Cancer POINTE is the online tool of the Education and Training Working Group of SIOP Paediatric Oncology Developing Countries (PODC).
10. How will this data be used?
We would like to establish the levels of services for children and adolescents with cancer to determine where there are gaps or inequities. Having a clearer picture will make it easier for funders to invest in improving services. We intend to use this data to lobby at a high level (e.g. with the World Health Organisation and government ministries) for increased attention to childhood and adolescent cancer care. We would like to increase SIOP membership in low- and middle-income countries so priorities in these regions are highlighted in SIOP activities.
11. Will this data benefit me?
We hope to provide adapted treatment protocols for use in low- and middle-income countries according to the facilities and resources at your hospital. This should be of direct help to you.
12. How can I use this data?
You may find it useful to network or refer patients outside your centre/country. If you have a patient requiring care unavailable in your country, you may find resources and contacts through SIOP, e.g. for stem cell transplant, targeted therapy, or clinical trials.
Comparison of services in your region may strengthen your argument when lobbying for more comprehensive services in your region or centre. You may also be able to locate potential collaborators for research that is relevant to your region.
13. What does SIOP do?
SIOP’s objectives and goals:
- To advocate globally for children with cancer and their families
- To focus attention on future research needs in paediatric oncology
- To explore possible partnerships with sister societies sharing the same mission and vision, and elaborating a common agenda
- To increase the SIOP membership to have a vibrant society which understands and fulfils the needs of its members
14. Should I forward the link to the survey to my colleagues in other hospitals?
Yes, please forward survey link to anyone who can provide the data. This includes people in other hospitals, other cities, other countries in Africa you may know.
15. Should I ask someone in my hospital to also complete the survey?
Yes, the more information we receive, the higher quality the data will be.
16. Has any data been published yet?
Not yet, this page will have the latest information on the project.
17. Is there a progress report?
Not yet, this page will have the latest information on the project.
18. Can I provide more data than the questions asked in the survey?
Yes, you will be able to provide more information when everything has been set up.
19. What languages will the data be available in?
We will be publishing the data in English although information about the programme will also be available in Arabic, French and Portuguese.
20. Will this programme include adult cancers?
No, this programme only covers childhood cancers.
21. Will this programme include other childhood diseases or just cancer?
No, this programme will only cover childhood cancers.
22. What is SIOP’s relationship with the World Health Organisation (WHO) and how is that relevant for this survey?
In January 2018, SIOP was formally accepted into official relations status with WHO as a non-state actor. One objective of SIOP’s 3-year WHO work plan is to explore health workforce capacity for childhood cancer. The current survey is not a WHO survey. The results from this survey will be used by WHO and other global stakeholders to better understand access to childhood cancer care.
23. How do I report a change?
24. What should I do if I think the published data is wrong?
SIOP are very grateful to the following people for helping with the creation and implementation of the survey: Rachel Hollis (UK), Jinnie Ho (Hong Kong), Julie Waxgiser (USA), Gonzalo Ponce Pestana (UK), Anabela Andrade (South Africa), Amita Trehan (India), Ramandeep Arora (India), Sukhpal Kaur (India), Urmila Yadav (India), Véronique Bouffet (France).