Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest or importance and go more in-depth. In this story we will talk about the details of the study and explain why it’s important, who will be impacted, and more.
If you read our short form research stories and find yourself wanting to learn more, you’ve come to the right place.
This week’s study is…
Sociodemographic disparities in presentation and survival of pediatric bone cancers
We previously published about this research in a story titled “Racial, Ethnic, and Socioeconomic Health Inequities Lead Some Children to Have Worse Osteosarcoma Care, Outcomes” which can be found here. The study was originally published in the research publication Journal of Pediatric Hematology/Oncology. You can read the abstract of the study here.
This research team was affiliated with the University of Colorado School of Medicine.
A breadth of evidence demonstrates that in the United States and elsewhere, socioeconomic factors have a major impact on health and medical outcomes. People that are low income, lack insurance, or are members of non-white racial groups consistently have worse outcomes and experiences when navigating the health system. In this study, a team of researchers were aware of case studies of adolescents who were diagnosed with very advanced, late-stage bone cancers, such as osteosarcoma and Ewing’s sarcoma. They sought to understand what factors were contributing to late diagnosis.
The team utilized data from the Surveillance, Epidemiology, and End Results registries. From this data, the identified pediatric cases of osteosarcoma and Ewing’s sarcoma that were diagnosed between 2004 and 2015. The team then evaluated demographic and socioeconomic factors to see if they were associated with poorer survival or greater likelihood of metastatic disease at diagnosis.
In osteosarcoma, they found that patients of Latino background, as well as those living in areas of high language isolation, had a greater chance of being diagnosed with metastatic cancer. Patients using public insurance had a greater chance of dying from their cancer than those on private insurance. Counties with lower levels of education also had an increased chance of death.
In Ewing’s sarcoma, non-whites were more likely to die from their disease than whites. Patients with metastatic disease that lived in communities with high rates of poverty were at greater risk of death than those in areas with low poverty rates. The findings from this analysis clearly demonstrate that there are clear socioeconomic and racial disparities in outcomes for adolescents diagnosed with bone cancer.
About Ewing’s Sarcoma
Ewing’s sarcoma is a type of cancerous small, round, blue cell tumor. It is cancer which can appear in soft tissue or bone. This cause of this rare cancer is due to genetic exchange between chromosomes 11 and 22 in 85 percent of cases. This exchange causes the EWS gene found on 22 to fuse with the FLI1 gene found on 11. It most commonly occurs in people between age 10 and 20. It more commonly affects males. Symptoms of Ewing’s sarcoma include pain at the site of the tumor, inflammation, increased red blood cell sedimentation, anemia, fever, swelling, and elevated levels of white blood cells. Treatment includes surgery, chemotherapy, and radiation. This cancer should be treated aggressively because metastatic disease is difficult to detect. The five year survival rate for this disease is around 70 to 80 percent. About 16 percent of primary bone cancer cases are Ewing’s sarcoma. To learn more about Ewing’s sarcoma, click here.
Osteosarcoma is a type of rare bone cancer that most commonly appears in teens and young adults. While rare, it is nevertheless the most common type of cancer to originate in bone in humans. Risk factors for this type of cancer include family history, exposure to radiation, previous bone diseases, Rothmund-Thomson syndrome, and Li-Fraumeni syndrome. Osteosarcoma often appears near areas where bone is growing; in young people, the area near the knee is commonly affected. Signs and symptoms of this cancer may include pain around the affected area that may worsen at night, a sudden breakage that occurs without much pressure (the disease weakens bone structure and makes breaks much more likely), or a swollen area. Treatment for osteosarcoma often includes surgical removal of the affected bone, chemotherapy, and the drug mifamurtide. Survival rate varies considerably depending on the circumstances of the case, but rates of long-term survival have increased in recent years. To learn more about osteosarcoma, click here.
Why Does it Matter?
The findings of this study aren’t necessarily a big surprise, but they highlight the potentially deadly effects of treatment access barriers, as well as systemic discrimination and racism in the healthcare system. These barriers likely play a role in increasing the risk of being diagnosed with cancer that has metastasized or spread. An example of an access barrier is language isolation, which had its greatest impact on children, but was less likely to be seen in adolescents; this is probably because adolescents are more likely to be proficient enough in English to communicate in medical settings, even if their parents are not.
The team is now conducting research in the form of a survey of healthy teens to get an idea of their understanding of childhood cancer and its symptoms. This could help identify other issues that could affect their ability to recognize symptoms.
“I think often kids are either confused or scared, and one of the misconceptions that we worry about is that kids may be thinking if they have cancer they are going to die no matter what, so if they ignore symptoms they can ignore the problem as long as possible. But one of the things we know about bone tumors is that if they present early, they are very curable. So, we need to not only be working to understand what kids know about cancer, but how we can more systematically address disparities so that every child is able to feel like they can say something and then get the treatment they need.” – Adam Green, MD, associate professor, pediatric hematology and oncology, CU School of Medicine