The needle sticks, body scans, chemo infusions, radiation, and looming fears are all behind you. The ordeal of childhood cancer has ended, and you are a survivor. Now what?
Time to grow up healthy. But that process is more complicated for survivors than for most children. Life after cancer entails some unique health needs that each survivor should attend to throughout their lives, which may include medical and/or psychosocial late effects of cancer treatment. New research getting underway at The Children’s Hospital of Philadelphia is helping find the best ways that mobile health (mHealth) technology can help pediatric cancer survivors manage their transition to adulthood and adult medical care while staying healthy.
An Online Survivorship Care Plan for Pediatric Cancer
One part of the research team’s innovation is a fresh digital approach to survivorship care planning for pediatric cancer, spearheaded by Dava Szalda, MD, MSHP, a pediatric oncologist at CHOP who also sees patients through their transition to adult care as an internist at the Hospital of the University of Pennsylvania (HUP).
Dr. Szalda wanted to ensure that childhood cancer survivors everywhere, not just in the practices at CHOP and HUP, could enter adulthood prepared to go through life aware of their individual needs. She described this approach as “heightened primary care,” which considers routine adolescent and young adult healthcare in combination with the unique exposures and medical needs of survivors.
In many practices, pediatric and adult patients leave cancer care with written recommendations on paper that they can take with them to future primary care appointments. Such survivorship care plans summarize a cancer survivor’s disease, treatments, and potential long-term risks and screening needs. In pediatrics, many oncologists follow pediatric survivorship care guidelines developed by the multi-institution Children’s Oncology Group to build a survivorship care plan for patients. Although access to survivorship care planning is growing, it is not universal or consistent across all practices.
When she set out to make pediatric cancer survivorship care plans more widely available, Dr. Szalda found inspiration close to home when she met Christine Hill-Kayser, MD, a radiation oncologist at CHOP and assistant professor of radiation oncology at HUP, who is editor-in-chief of the cancer education website OncoLink at Penn’s Abramson Cancer Center, and of the site’s cancer survivorship care planning tool, OncoLife.
OncoLife, a free, self-service online tool for adult survivors of adult cancers to develop a survivorship care plan, had been created in 2007 as one of the first ever online survivorship care plans and one of the most comprehensive. It had a number of distinct advantages.
“Patients and providers can both take advantage of this great resource, and patients anywhere in the world can utilize the tool,” said Dr. Szalda, who is also an instructor in the division of Oncology at the Perelman School of Medicine at the University of Pennsylvania. She added that this tool is available to survivors who may have completed cancer treatment years ago, when fewer doctors were thinking about survivorship care.
Dr. Szalda, Dr. Hill-Kayser, and several collaborators teamed up to adapt the online survivorship care plan for pediatric cancer survivors. Their team took information from the OncoLink planning tool and incorporated evidence-based guidelines for health risks and follow-up care for pediatric cancers. They conducted feasibility testing with adult survivors of pediatric leukemia and lymphoma, and the results showed that the care plan was feasible within this pilot group. The findings recently appeared in the Journal of Adolescent and Young Adult Oncology.
The team continues to refine the prototype version of the pediatric online survivorship care plan by adding more cancer types and treatments. They are also assessing how well the plan aids survivors in improving knowledge about the care they need. Ultimately, after further testing and validation, Dr. Szalda expects to make the pediatric care plan publicly available to adult survivors of childhood cancer anywhere, at any age.
Beginning this summer, the team is also taking the tool to a new level by studying how another newer technology can help adolescent and young adult cancer survivors integrate their care plan into their daily lives.
Mobile Health Tool to Aid Survivor Self Management
The new study, called AYA STEPS, combines the online survivorship care plan for pediatric cancer survivors with a mobile app-based self-management system, and is funded by the Centers for Disease Control and Prevention. Dr. Hill-Kayser is principal investigator, with Dr. Szalda and another collaborator from the pediatric online care planning work, Lisa Schwartz, PhD, as co-investigators.
Dr. Schwartz, a psychologist in CHOP’s Cancer Center and assistant professor at Penn, had already developed a tool that would suit this new mHealth goal. In a project called THRIVE, she oversaw development and feasibility and acceptability testing of a two-way texting intervention for adolescent and young adult cancer survivors. THRIVE was initially part of a Department of Pediatrics Chair’s Initiative at CHOP, and it helped lay the groundwork for establishing the mHealth Research Affinity Group at CHOP which Dr. Schwartz now co-chairs. Now working with a new vendor to customize an existing smartphone app for an updated version of THRIVE in the new study, Dr. Schwartz is eager to apply what she learned from the feasibility testing.
The combination of the mHealth intervention with the online survivorship care planning tools could bring the best of both worlds for adolescent and young adult survivors. The new study will be a randomized controlled trial in which all participants complete the online survivorship care plan. Half of participants will also download the health management mobile app, which will contain a copy of their care plan along with other health promotion and education resources. Participants in the group using the app will also have two-way text messages focused on specific health concerns and questions they endorse. Their experiences can be further personalized based on their responses to the program’s text messages.
“The text messages are quite rich,” Dr. Schwartz said. “Some are quizzes, such as a question with a checklist so they can respond and say which item they want to check off. Depending on their answer, they might get different subsequent messages. We can text them a video or a link to other resources, as well.”
The team will measure how well each group of participants follows the recommendations of their survivorship care plans, using measures such as health behaviors, personal behavioral health and functional outcomes, and participants’ attendance to medical appointments that are necessary for their continued care.
“Adolescent and young adult cancer survivors are transitioning in many more ways than most adult survivors,” Dr. Hill-Kayser said. “At the same time they are transitioning from cancer patients to survivors, from kids to adults, from being managed by their parents to managing themselves, and, in many cases, going through emotional maturations that might have been delayed by active cancer treatment. It makes sense that they may need a different communication approach.”