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
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.
Inclusion Criteria:

 1. Patients with a cancer diagnosis of acute lymphoblastic leukemia or Hodgkin's lymphoma

 2. Diagnosis before age 21 years

 3. Currently off therapy and considered in remission

 4. Currently 15 years or older

 Exclusion Criteria:

 1. Persons who have never had cancer or who have another pediatric malignancy (Wilms
 tumor, neuroblastoma) as the website will not yet be adapted to create care plans for
 them.

 2. Persons who were diagnosed with cancer >21 years. This program is designed for
 survivors of pediatric cancers. Survivors of adult cancers are referred to the
 existing information provided by Oncolink, Oncolife and the LIVESTRONG survivorship
 care plans.