Download Childhood Cancer in Comp Cancer Programs

Childhood Cancer Insertions and Interventions in
Comprehensive Cancer Control Plans
The following is a list of replies received in response to the following inquiry sent out on the
National Comprehensive Cancer Control Program List Serve:
California is currently in the beginning stages of revising its Cancer Control Plan (current plan goes
through 2015). We’d like to know if any states have:
(1) incorporated childhood cancer into their Cancer Control Plans or
(2) are beginning to revise their Cancer Control Plans and would be interested in incorporating
childhood cancer
Any information would be helpful as we have a newly formed Childhood Cancer Subcommittee
that will be working on incorporating childhood cancer into the third iteration of our Cancer Control
Plan.
This analysis was compiled in July 2014 by the California Comprehensive Cancer Control
Program.
Childhood Cancer Interventions in Comprehensive Cancer Control Programs
(compiled by Sam Mooneyhan, Florida Comprehensive Cancer Control Program)
Colorado Kids Cancer Association (CKCA), the Pediatric Task Force of the Colorado
Cancer Coalition, utilize their website and an annual nurse mailing to communicate with
stakeholders and meet objectives. For example, they held an event for school and
college personnel and parents on learning experience during and after cancer treatment,
were involved in a Miracle Party and developed and disseminated resources through a
resource guide and resource fair.
Comprehensive Cancer Alliance for Idaho created a work group to specifically address
childhood cancers and a very well developed separate plan for childhood cancers which
highlights the range of effects childhood cancer has on the health system and specific
objectives to address these issues.
DC Cancer Consortium has several goals and objectives that address pediatric palliative
care and funded the Pediatric Palliative Care organization which developed pain cards for
pediatric cancer patients to facilitate discussions with physicians and medication
conversion cards to aid in dosing decisions for youth.
Northern Plains Report was a multistate collaborative report (2008) by the cancer
programs of Montana, North Dakota, South Dakota, and Wyoming. Each state with small
numbers of childhood cancer cases aggregating data across four states to allow more
rigorous comparison with national rates
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South Carolina Cancer Alliance has two documents, the Cancer Control Plan and Report
Card, which includes information and area resources for childhood cancers and is working
to update these documents in the coming year.
Texas Cancer Control Plan addresses childhood cancer through survivorship and the
unique issues related to needs of this population such as effects of treatment, integration
back into social and educational systems, insurance coverage needs, long-term care, and
risks of treatment late effects and of developing other cancers later in life.
Washington State Plan for Healthy Communities takes a life course approach so includes
childhood cancer access to care and support needed.
Wyoming Comprehensive Cancer Control Consortium compiled resource guide with
childhood cancer resources in the state and, along with several partners, created a toolkit
for childhood cancer
From Anne Willis, MA - George Washington University (GW) Cancer Institute
We have recently done an analysis of state cancer plans as part of an effort to create a
goal bank that states can draw from when updating their plans. One of the things we
captured was states with goals or content related to childhood cancer. I've attached a
summary of which states have included something on this topic in their plans and a brief
overview of what they cover.
Childhood Cancer in Cancer Control Plans
There are nine states and two tribal groups who have incorporated childhood cancer into
their Cancer Control Plans:
Alaska
http://cancercontrolplanet.cancer.gov/state_plans/Alaska_Cancer_Control_Plan.pdf
Because childhood cancers are rare in Alaska, resources for children who are affected are
limited. In order to decrease this burden, Alaskan children can now receive initial and
follow-up hematology and oncology services in Anchorage, as part of the Providence
Alaska Medical Center Children's Hospital Sub-Specialty Clinic. More information can be
found on pages 27-28 of the document.
Arizona
http://cancercontrolplanet.cancer.gov/state_plans/Arizona_Cancer_Control_Plan.pdf
This plan has a special focus on pediatric oncology research. There are plans to develop a
statewide pediatric Phase I/Phase II clinical trial research program, as well as other
research collaborations between state and national consortiums/institutions. More
information can be found on page 134.
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Colorado
http://cancercontrolplanet.cancer.gov/state_plans/Colorado_Cancer_Control_Plan.pdf
This plan includes nine objectives and correlating strategies related to pediatric cancers
starting on page 83 of the document. Their goals include developing a Pediatric Task
Force and increasing awareness and various resources for pediatric cancers, children
suspected of having these cancers, and for those who are cancer survivors.
Idaho
http://cancercontrolplanet.cancer.gov/state_plans/Idaho_Childhood_Cancer_Control_Plan.
pdf
Idaho has a separate cancer control plan specifically for childhood cancer control.
Michigan
http://cancercontrolplanet.cancer.gov/state_plans/Micihigan_Cancer_Control_Plan.pdf
This plan includes a section related to childhood cancer survivorship starting on page 80.
There is a goal to improve quality of life with four objectives and related strategies
dedicated to survivors of childhood cancers.
Nevada
http://cancercontrolplanet.cancer.gov/state_plans/Nevada_Cancer_Control_Plan.pdf
Nevada has incorporated childhood cancer into the comprehensive cancer plan through
the development of comprehensive pediatric oncology centers in both the northern and
southern parts of the state, increasing enrollment in clinical trials, and ensuring access to
quality and life and survivorship programs. Information specific to this can be found starting
on page 43.
New Jersey
http://cancercontrolplanet.cancer.gov/state_plans/New_Jersey_Cancer_Control_Plan.pdf
This plan has a site specific chapter with a focus on childhood cancer that can be found
starting on page 5-1 of Section II. There are eight goals with objectives and strategies
aimed at enhancing the quality of life of the child, adolescent, and/or young adult patient
with cancer from diagnosis through treatment to survivorship across the life span.
Tennessee
http://cancercontrolplanet.cancer.gov/state_plans/Tennessee_Cancer_Control_Plan.pdf
This plan has a chapter focus on childhood cancer starting on page 53. There are seven
objectives with related strategies meant to reduce/eliminate suffering and death due to
childhood/adolescent cancers and to provide survivors and families the services needed to
live meaningful and productive lives.
Wyoming
http://cancercontrolplanet.cancer.gov/state_plans/Wyoming_Cancer_Control_Plan.pdf
This plan has a section dedicated to childhood cancer starting on page 41. There are four
goals with specific objectives and strategies related to pediatric cancer needs,
psychosocial and physical health of the child with cancer and the family, advocacy for
childhood cancer, and increasing education related to appropriate end-of-life care for
childhood cancer patients.
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Northwest Portland Area Indian Health Board
http://cancercontrolplanet.cancer.gov/state_plans/Northwest_Portland_Area_Indian_Healt
h_Board_Cancer_Control_Plan.pdf
This plan includes five objectives with strategies related to childhood cancer starting on
page 33. These include increasing the percentage of primary care providers (PCPs) who
recognize childhood cancer signs, increasing access and referrals to appropriate
treatment, increasing available support to persons and parents/caregivers of those being
treated for and survivors of childhood cancers, and increasing education of school
personnel and primary care providers about late and long term effects of childhood cancer.
Tohono O'Odham Nation
http://cancercontrolplanet.cancer.gov/state_plans/Tohono_O_Odham_Cancer_Control_Pla
n%20.pdf
This plan incorporated childhood cancer into many areas. Goals include increasing
educational and support services for children affected by cancer and developing childhood
cancer hospice services.
Other responses received:
Kentucky Comprehensive Cancer Control Program/ Kentucky Cancer Consortium
This has been a tricky one for us here at the Kentucky Cancer Consortium (KCC). We are
in the process of updating the Quality of Life section of the Kentucky Cancer Action Plan
(CAP). It's difficult to create S.M.A.R.T. objectives when there so many aspects quality of
life measures that have no baseline. This meant that in order to have SOMETHING
measurable, in the last iteration of the CAP, we had childhood cancer objectives like this:
By 2013, establish baseline number of continuing education opportunities available to
health care professionals who work with childhood cancer survivors (includes primary care
to oncology).
By 2013, establish baseline number of educational resources available to childhood cancer
survivors.
BUT following this Plan revision, we did not have the momentum in a small group within
the KCC to actually go out and GET this info.
So, this time around we're determined (if at all possible) to make sure our objective has an
existing baseline if at all possible, AND will show that we are making a difference in
improving quality of life for childhood cancer survivors. Since the University of Kentucky is
the only place in KY with a long-term follow-up clinic for childhood cancer survivors, we are
considering this objective:
By 2018, increase the number of pediatric cancer survivors who have been evaluated at
the Long-term Follow-up Clinic at Kentucky Children’s Hospital (UK) from XX to XX.
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Kansas Comprehensive Cancer Control Program
Kansas has not done so to date. We are planning an epidemiological study on childhood
cancers later in Year 3, and we may do so in the future.
Montana Comprehensive Cancer Control Program
The MT CCC Plan has childhood cancer activities listed in it under Quality of Life and
Survivorship. Please find the link to the plan: http://www.mtcancercoalition.org/ (the CCC
Plan is on the right hand side of the website)
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