Disparities in Outcomes for Children with Rare Eye Cancer Suggest Unequal Access to Primary Care
October 05, 2015
Hispanic Children and Children from Disadvantaged Areas More
Likely to Lose an Eye to Retinoblastoma
(News
release)
Disparities
in outcomes for children with retinoblastoma —
a rare eye tumor usually discovered in routine pediatric check-ups — suggest
unequal access to primary care, researchers from Dana-Farber/Boston
Children’s Cancer and Blood Disorders Center report in a study published
in the journal 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 socio-economic status
were more likely to have been diagnosed early enough that physicians could
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.
The
study found:
- At
the time of diagnosis, the disease had spread beyond the eye in 33 percent
of Hispanic children, compared with 20 percent of non-Hispanic children.
- At
diagnosis, disease had spread beyond the eye in 28 percent of children
from high-poverty areas, compared with 20 percent of other children.
Similar disparities were found in other measures of socio-economic status.
- Three-quarters
(74.5 percent) of Hispanic children had the diseased eye surgically
removed, compared with two-thirds (67.5 percent) of non-Hispanic children
and less than two thirds (63 percent) of non-Hispanic white children.
Among non-Hispanic black and Asian children, 74 percent had their eye
removed.
- Three-quarters
(76 percent) of children living in disadvantaged counties had their eye
removed, compared to less than two-thirds (64 percent) 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- (cold) or thermo- (heat) therapy 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
senior author Carlos
Rodriguez-Galindo, MD, clinical director of the Solid Tumor Center at
Dana-Farber/Boston Children's. "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."
Many
children with retinoblastoma lose an eye, regardless of race, ethnicity or
socio-economic status, because most children present with advanced intraocular
disease, notes co-author Paola Medina Friedrich, MD, a pediatric oncologist at
Dana-Farber/Boston Children’s. This, she says, 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,” 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 two years.”
Disparities
in access to treatment may also contribute to outcomes that differ by race,
ethnicity and socioeconomic status, the researchers note. Salvaging a patient’s
eye requires access to sophisticated, multi-disciplinary care, as well as
multiple clinic visits and treatment administration, all which may be more
difficult for families facing economic, cultural or language barriers. “As
treatments for retinoblastoma become increasingly complex,” the study warns,
“disparities may worsen.”