Smart Adult Living After Childhood Cancer (SmartALACC) Online Care Plans: Feasibility and Patient Satisfaction

Smart Adult Living After Childhood Cancer (SmartALACC) Online Care Plans: Feasibility and
Patient Satisfaction is a pilot project designed to test the feasibility and acceptability
of use of an online care plan generator for adult survivors of pediatric cancers.

Because of improvements in cancer screening, diagnosis and treatment, there are an estimated
13 million cancer survivors living in the U.S. today, with projected growth to 18 million by
2020 (De Moor). These survivors include survivors of leukemia and lymphoma, as well as solid
tumors including breast, colon, testicular and prostate cancers. It also include a subset of
patients who are survivors of pediatric cancers, as over 80% of children diagnosed with
cancer today are cured. In fact, it is estimated that 1 in every 600 young adults between
the ages of 20-35 is a cancer survivor (Dreyer, Hewitt, Greenlee).

Cancer patients as a whole, despite improved cure rates, have been shown to receive
inadequate medical care as survivors. Comprehensive survivorship care should include routine
age appropriate medical care as well as information about prior diagnosis and treatment, and
screening for recurrence of their primary malignancy as well as secondary malignancies, and
screening for late effects of cancer treatment (Earle, Craig). Adult survivors of pediatric
cancer, exposed to life-saving but toxic treatments during times of growth and development,
are particularly prone to late effects but also have been shown to have inadequate
monitoring and follow up. This is a concern as late effects of treatment are sometimes
silent for years or decades after completion of cancer therapy and that adult survivors of
childhood cancer, years from their diagnosis and treatment, have been shown to have alarming
rates of life threatening chronic health conditions compared to their peers (Oeffinger).
Thus, these late effects may emerge during adulthood when patients have moved on from the
care of their primary oncologist. Complicating matters, primary care providers, who often
assume the care of these patients, may not have the knowledge or tools necessary to
appropriately care for survivors of childhood cancer (Suh).

National organizations have come together to identify ways to improve quality of and access
to long term follow up care for adult survivors of childhood cancer. The Children's Oncology
Group published Long Term Follow up guidelines which recommend lifelong risk based follow up
care and screening (COG guidelines). In addition, in 2005, the Institute of Medicine
published a report, From Cancer Patient to Cancer Survivor: Lost in Transition gave
recommendations to improve health outcomes of cancer survivors which includes the receipt of
a comprehensive care summary and follow up plan to aid in appropriate risk based follow up
care (Hewitt). Despite these recommendations childhood cancer survivors knowledge about past
diagnosis and treatment and engagement in follow up care is suboptimal (Kaden-Lottick,
Nathan). It has been demonstrated that pediatric cancer survivors are not receiving care
summaries, and thus may try to find appropriate follow up information via the other sources
such as the internet (Casillas).

Oncolife, a free online tool to create survivorship care plans, was created in May 2007
(Hill 2009), and has been housed at maintained at the University of Pennsylvania since then.
This tool has shown to be feasible way to provide information and care plans to survivors of
adult cancers. In addition, survivors who have used the resource, state that it will, or has
already, positively influenced communication about cancer related follow up with their
healthcare team (Hill 2013).

The study aim is to adapt Oncolife to provide individualized information for adult survivors
of childhood cancer with the unique recommendations for long term follow up for pediatric
cancer survivors. Oncolife has already been collecting data on plans created by adult
survivors of adult cancers and has been reviewed by the IRB previously (IRB#806368 and
#811528 note: previously called Oncolink). Adaption of Oncolife to meet the needs of adult
survivors of childhood cancer will improve access to high quality electronic health
information as patients may find long term follow up guidelines cumbersome or largely
irrelevant to their needs depending on their specific exposures. Individualizing the
available information to a particular survivor will allow for better understanding of and
improved adherence to recommended cancer related follow up care. We propose to develop
survivorship care plans in a way that will most benefit users, thus after creation of the
Smart Adult Living After Childhood Cancer care plan we will ask for patient input via survey
immediately after receipt of their care plan and in a one month follow up survey.