Helping Families in Mongolia Face Childhood Cancer
The Together by St. Jude™ online resource and the National Cancer Council of Mongolia (NCCM) developed informational fact sheets about childhood cancer and medicines for patients and families in Mongolia.
As a medical doctor by training, I look to families as my partners. Their knowledge and input are critical.
I want to help support families affected by childhood cancer through education and information. That is one of the reasons I helped start the National Cancer Council of Mongolia (NCCM).
I was inspired by my grandmother. She was the first female oncologist (cancer doctor) in Mongolia and helped start Mongolia’s National Cancer Center. She knew the importance of health education. So, she wanted her patients to have the information they needed to make decisions about their care.
That is what I want too. But many families in Mongolia cannot find reliable medical information in their native language, Mongolian. Most resources are in English or other languages. This lack of information makes it harder for parents to understand what is happening and how they can best help their children.
To provide the trustworthy resources for families, NCCM and St. Jude Children’s Research Hospital worked together to find out what information families need most. In a survey, families said they want to know more about their child’s cancer, treatment options, and medicines.
Based on this input, the Together by St. Jude™ online resource and NCCM developed fact sheets in Mongolian for patients and families. We now provide fact sheets for 6 common cancers and 22 cancer medicines.
Families and care teams worldwide observe International Childhood Cancer Day on February 15. NCCM used the occasion this year to share the fact sheets and other patient education resources at the National Center for Maternal and Child Health in Ulaanbaatar, Mongolia.
How the fact sheets help
These fact sheets are written in a way families can easily understand. The information is translated into Mongolian and checked to make sure it is correct.
We have disease fact sheets for these cancers:
- Acute lymphoblastic leukemia: A type of blood cancer
- Astrocytoma: A cancer of the brain
- Burkitt lymphoma: A cancer of the lymph system
- Hodgkin lymphoma: A cancer of the lymph system, which is part of the immune system
- Retinoblastoma: A cancer of the eye
- Wilms tumor: A cancer of the kidney
Each fact sheet explains:
- What the cancer is
- Symptoms to look for
- How the cancer is diagnosed and treated
- Support available for families
The fact sheets include medical illustrations and key points to help families understand the information. The sheets also have questions parents can ask their care providers.
Fact sheets for medicines
Each medicine fact sheet contains possible side effects and tips for patients and families. We developed fact sheets for all medicines listed on the World Health Organization (WHO) Essential Medicines List for Children:
We hope that these cancer and medicine fact sheets will make families’ cancer experience a little easier. Reliable information can help families feel more prepared and confident about their child’s treatment.
Download and share these fact sheets from the Together by St. Jude™ online resource.
...many families in Mongolia cannot find reliable medical information in their native language, Mongolian. Most resources are in English or other languages. This lack of information makes it harder for parents to understand what is happening and how they can best help their children.
More efforts to help families in Mongolia
These fact sheets build upon the work of the Global Initiative for Childhood Cancer (GICC) and the Global Platform for Access to Childhood Cancer Medicines.
The global initiative seeks to improve cancer treatments and improve cancer survival in countries such as Mongolia, which lack the resources of higher-income countries. In resource-limited countries, childhood cancer survival rates are about 20%. The goal is to raise this number to 60% by 2030.
The global medicine platform will help provide cancer medicines for children at no cost. Mongolia is a focus country of the GICC and among the first to benefit from the global medicine platform.
