Disparities in Outcomes for Children With Retinoblastoma May Suggest Unequal Access to Primary Care
Disparities in outcomes for children with retinoblastoma suggest unequal access to primary care, researchers from Dana-Farber/Boston Children's Cancer and Blood Disorders Center reported in a study published by Truong et al in JAMA Pediatrics. Although virtually all the children in the study survived, Hispanic children and children who lived in disadvantaged areas were more likely to lose an eye due to late diagnosis. White children and children who live in areas with a higher socioeconomic status were more likely to have been diagnosed early enough for physicians to preserve their eye and vision.
In a review of 830 cases recorded in the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) registries, researchers examined results for children under age 10 whose cases of retinoblastoma were recorded between January 1, 2000, and December 31, 2010. They looked at race and ethnicity and analyzed county-based data on poverty, educational attainment, language isolation, crowding, unemployment, and proportion of immigrants.
Study Findings
The study found at the time of diagnosis, the disease had spread beyond the eye in 33% of Hispanic children, compared with 20% of non-Hispanic children. At diagnosis, disease had spread beyond the eye in 28% of children from high-poverty areas, compared with 20% of other children. Similar disparities were found in other measures of socioeconomic status. About three-quarters (74.5%) of Hispanic children had the diseased eye surgically removed, compared with two-thirds (67.5%) of non-Hispanic children and less than two thirds (63%) of non-Hispanic white children. Among non-Hispanic black and Asian children, 74% had their eye removed. Three-quarters (76%) of children living in disadvantaged counties had their eye removed, compared with less than two-thirds (64%) who lived in advantaged counties.
Retinoblastoma is usually detected during a routine pediatrician visit with a so-called red reflex test: When the clinician flashes a light in the child's eye, a white reflection from the retina—rather than a healthy red reflection—indicates the possible presence of a tumor. The disease typically affects children under age 5, and most cases are diagnosed before age 2.
Early diagnosis makes it easier for clinicians to salvage the eye, either through laser therapy or cryo- or thermotherapy delivered by an ophthalmologist or through chemotherapy delivered to the eye. If the tumor has spread deep into the eye socket or beyond, a surgeon must remove the affected eye.
“Because retinoblastoma is most often diagnosed during well-child visits, the disparities uncovered in this study raise questions about inequities in primary care that go beyond the few children who develop this rare cancer,” said Carlos Rodriguez-Galindo, MD, Clinical Director of the Solid Tumor Center at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. “The findings also tell us that, despite the advances of recent decades in the care of children with cancer, disparities still exist. These disparities may impact children in different ways, depending on the type of cancer and treatment received. It is very important to perform disease-specific studies of disparities to better assess the impact of this problem.”
Importance of Screening, Multidisciplinary Care
Many children with retinoblastoma lose an eye, regardless of race, ethnicity, or socioeconomic status, because most children present with advanced intraocular disease, noted Paola Medina Friedrich, MD, a pediatric oncologist at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. This, she said, suggests that there is room for improved awareness among pediatricians about screening children during routine visits or room for improvement in skills and conditions during clinic visits that would help pediatricians detect the tumor's characteristic white reflection at earlier stages of the disease.
“Even without considering disparities, most children present with large intraocular tumors. Ideally we should detect these tumors when they are small and have not compromised vision,” Dr. Friedrich said. “The guidelines recommend routine vision checks, including the red reflex check, on every well child visit. This is particularly important during the first 2 years.”
Disparities in access to treatment may also contribute to outcomes that differ by race, ethnicity, and socioeconomic status, the researchers noted. Salvaging a patient's eye requires access to sophisticated, multidisciplinary care, as well as multiple clinic visits and treatment administration, all of which may be more difficult for families facing economic, cultural, or language barriers. “As treatments for retinoblastoma become increasingly complex,” the study warned, “disparities may worsen.”
The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.
