Northeast Florida Medicine
Vol. 66, No. 2 2015
49
Pediatric Oncology
is desired with active participation by the members. This
program then fades into the entertainment portion and
active conversation. Education and support are disguised
as a teen gathering and AYA members are often heard
asking when they can assemble for the next social event.
The AYA age group is constantly looking for peer ac-
ceptance and approval, and C.H.A.T. is one way to form a
comfortable identity withmutual support. Part of achieving
this identification was built into the program’s formation.
Visible branding was created with the C.H.A.T. logo and
has been incorporated into provision of new resources.
New members receive branded running bags that contain
two texts: Everything Changes and Planet Cancer. They
also receive a C.H.A.T. logo T-shirt and a custom-created,
branded flash drive that contains a lengthy list of AYA
oncology resources with internet links for access. Liter-
ature has shown that AYA patients prefer to visit cancer
websites with cancer-related information that also provide
the ability to chat with other AYA.
14
This preference was
considered in assembling the list.
Meetings are recognizable by the large C.H.A.T. sail flag.
Other ways of specializing equipment for this population
include six new tablet computers for long outpatient days,
providing access tomusic, games or schoolwork. Noise-can-
cellation headphones were added to modernize the noisy
infusion center. Rewards given to these patients, for difficult
moments, include electronics and coffee gift cards, instead
of our traditional “treat box” dolls and arts-and-crafts. In
addition, the G-rated collection of movies and video games
was expanded to show age-appropriate items.
Education is a center point of the AYA program. Take-
home messages are delivered though small informal talks
at each social event, as previously mentioned. C.H.A.T.
leadership, however, wished to periodically hold a
more-formal didactic session, still in a social atmosphere,
to tackle areas deemed most interesting and relevant to
AYA members. These topics would be beneficial if ad-
dressed at length. The first educational forum was held
in a private, restaurant conference room with an invited
guest to discuss “Taking Care of Yourself During and
After Cancer: Dating, Relationships and Sexual Health.”
Sage Bolte, Ph.D, LCSW is a nationally-known speaker
from the Life with Cancer Family Center, who specializes
in this area. He provided practical, intimate advice to
the audience. This topic was the highest ranked concern
on surveys of the C.H.A.T. members and focused on a
matter they acknowledge is rarely discussed by family
or providers. The open conversation also enlightened
the staff members. The sexuality domain is one of the
known, unmet needs in young people with cancer.
15
This
year, plans are underway for a survivorship symposium
to be held, in which a panel of AYA cancer survivors will
deliver personal perspectives on the cancer experience and
be available for Q&A to C.H.A.T. members.
Two final areas of concern to the AYA population, and
the providers who care for them, are fertility preserva-
tion and guidance counseling. Fertility preservation is a
complicated domain in AYA oncology that continues to
move forward in both biological and psychosocial arenas.
Appropriate knowledge must be provided to new patients,
along with feasible opportunities to maintain the ability
to have biological children following oncology treatments.
C.H.A.T. assembled a team of interested individuals
from the program to act as an educational intervention
for newly-diagnosed oncology patients. The goal was to
acknowledge the level of risk to a patient’s fertility based
on the treatment plan and provide up-to-date information
on available mechanisms for preserving fertility, when
possible. The teammet with a renowned local reproductive
endocrinologist for training and to streamline referrals.
One member took extensive training to be certified on the
subject throughMoffitt Cancer Center. Preserving fertility
is not always possible, but being open, honest and upfront
about the issue is a worthy goal in and of itself. C.H.A.T.
members identified it as an issue that is under-addressed.
The C.H.A.T. program also provides free access to vo-
cational counseling by a clinical social worker. The social
worker now has a PhD in vocational rehabilitation. This
opportunity allows all of the AYA patients to meet on an
individual basis, within the clinic space, to discuss med-
ical deficits and potential impact on schooling. Aptitude
testing is provided and patients can be given guidance
on acquiring accommodations, specialized training, and
achieving their long-term life and career goals. Results
from the Childhood Cancer Survivor Study have shown
pediatric cancer survivors to be more likely to require spe-
cial education services, less likely than expected to attend
college and more likely to be unemployed, in addition to
their increased risk of impaired health.
16,17
This resource
gives them the earliest advantage to reverse this trend and
reach their aspirations.
Rounding out a specialty program’s development re-
quires sustainability and advancing the field. C.H.A.T.
is accomplishing both. With the end of the two year
grant award, C.H.A.T. received continued funding from
Northeast Florida’s local pediatric oncology partner, the
charitable organization Tom Coughlin’s Jay Fund. The
organization agreed to give ongoing support to continue
C.H.A.T.’s proven successful activities. Research efforts
are also underway. There are studies under development
to assess the different long-term side effects of radiation
therapy in AYA patients, in comparison to those of their
younger counterparts, and to evaluate the ethical difficulties
inherent in fertility preservation counseling.
