Elephants and Tea - September 2019 - 8

Survivorship

CHILDHOOD CANCER AWARENESS MONTH

The need for long-term follow-up for childhood cancer survivors is
supported by the American Society of Pediatric Hematology/Oncology, the International Society of Pediatric Oncology, and the American
Academy of Pediatrics, the Children's Oncology Group (COG) and the
Institute of Medicine. A risk-based medical follow-up is recommended,
which includes a systematic plan for lifelong screening, surveillance,
and disease prevention. Everyone should get a copy of the survivor's
owner's manual and maintenance record, so that they know when to
stop, check the oil and rotate the tires. Some of you may have what is
called a Passport for Care (https://cancersurvivor.passportforcare.org/).
This is your survivorship care plan. Unfortunately, less than 30% of the
childhood cancer survivor population have access to a comprehensive
survivorship clinic. So what if you never received a copy of an owner's
manual individualized for your particular cancer make and treatment
model? No worries; check out the Children's Oncology Group Long
Term Follow-Up guidelines for Survivors of Childhood, Adolescent
and Young Adult cancers. These guidelines are located online at
www.survivorguidelines.org.
The guidelines provide the following information:
1. Provide recommendations for screening and management of late
effects that may potentially arise as a result of treatment for childhood cancer.
2. Increase awareness of potential late effects.
3. Standardize and enhance follow-up care provided to survivors
These guidelines were developed as a resource for clinicians who provide ongoing healthcare to survivors of childhood cancer. According
to the Children's Oncology Group, the guidelines are useful for asymptomatic survivors of childhood, adolescent and young adult cancers,
presenting for routine exposure based on medical follow-up. They also
provide information to conduct more extensive evaluations as clinically
indicated for survivors presenting with signs and symptoms that suggest
that they might have an illness or organ dysfunction. The guidelines also
offer health links that discuss topics such as: diet and physical activity,
educational and emotional issues, how to find a healthcare plan and an
introduction to long term follow up. They offer a review of every organ
system in the body that could potentially be effected by late effects. A
disclaimer here: the guidelines are intended and written for healthcare
professionals, so the COG highly recommends you review them with
the assistance of a healthcare professional who is knowledgeable about
long-term follow up care for survivors of childhood, adolescent and
young adult cancer.
Now let's say you started out this race in the minor league circuit (aka
pediatric cancer center) and once you hit 18 you "transition" to the major
leagues (aka adult care provider). Many childhood cancer survivors experience this phenomena. Transitions are defined as passages from one
state, stage, or subject to another. It involves movement from one form
to another. In this situation we are referring to the space in-between
adolescence and young adulthood. You may have experienced this, in
another way: one day your parents are making decisions for you, and
the next day you it's up to you. As a survivor this can mean that you may
have an entirely new pit crew. These adjustments can cause individuals
to experience anxiety and confusion.
Once you turn 18 years of age, you are no longer considered a
minor, you are legally an adult, so your team will be looking to you
to make decisions. In a healthcare environment this could include
completing your advance directives and health care power of attor-

ELEPHANTSANDTEA.COM
SEPTEMBER 2019

ney, informed consent, and making your own treatment decisions.
This can be both exhilarating and daunting. Parents and caregivers
may also find this "transition" period difficult as they relinquish
parental control and decision making as their child changes lanes
from childhood to adulthood.
There is evidence to support "Transition Programs" to help young
adults make the move from pediatric to adult oriented healthcare
systems. According to the Canadian Task Force on Adolescent and
Young Adult (AYA) Cancer (2014) these programs should include clear
policies on transition on things such as: the timing of the transition,
preparation and education for the patient, possession of a survivorship care plan, receptive and capable adult services, and collaboration
between pediatric and adult oncology teams, administrative support
and integration of primary care providers. The American Society of
Clinical Oncology (ASCO, 2010) recommendations support assisting
AYA survivors in developing appropriate self-management behaviors,
including health literacy, coping skills, and understanding treatment
implications help to make successful transition to adult settings/or
providers. Collaborative efforts to bridge the gap might include joint
team meetings, bilateral support on tumor board agendas, information
exchange or dual appointments. The task force also recommended that
"education, empowerment, support and resources for the survivors and
parents are fundamental to ensure the appropriate communication of
treatment history and late effects risks to new care providers so that
they can deliver the appropriate long-term follow-up."
Childhood cancer survivors may lose touch during this transition
phase for the following reasons: relocation, attend college out of town
or simply not being aware that they should attend survivorship clinic
visits as part of their ongoing health maintenance. It is risky to underestimate the potential
of serious cancer related
health problems and not
adhere to long-term follow up visits over their
lifespan. According to
the National Institute of
Health childhood cancer survivors frequently
experience life-altering
morbidity related to effects of cancer treatment
on endocrine, reproductive, musculoskeletal and
neurologic function. The
prevalence of late effects
increases as time from
cancer diagnosis elapses.
Resea rch ha s demonstrated that among adults
treated for cancer during
childhood, late effects
contribute to a high burden of morbidity, 60%
to more than 90% develop one or more chronic
health conditions, and

"Think of it
this way, you
want every
member
of your pit
crew to have
access to
pertinent
information
so that you
can stay in
the race. "

https://cancersurvivor.passportforcare.org/ http://www.survivorguidelines.org http://www.elephantsandtea.com

Elephants and Tea - September 2019

Table of Contents for the Digital Edition of Elephants and Tea - September 2019