Testing Re-engagement Interventions for Well-being of Childhood Cancer Survivors

Dr. Schwartz and her team are testing re-engagement interventions for adolescent and young adult survivors of childhood cancer.

By Nancy McCann

Surviving childhood cancer is certainly cause for celebration. But for many the jubilee is cut short, as 70% of survivors develop chronic or life-threatening late effects from treatment, and these often emerge during young adulthood. Annual long-term follow-up care (LTFU) is critical to manage and monitor for late effects, recurrence, or new cancer, but studies have shown that as risk of these late effects or second cancers increases, the rate of engagement for follow-up care decreases.

So how do care providers empower adolescents and young adults to see that LTFU is a part of taking control of their health?

Enter Lisa Schwartz, PhD, an attending psychologist in the Division of Oncology and the Childhood Cancer Survivorship Program at Children's Hospital of Philadelphia. Dr. Schwartz has developed expertise in mobile and digital health research and is co-founder and co-director of CHOP's Mobile Health (mHealth) Research Affinity Group. She is leading the innovative trial "Re-Engaging Adolescent and Young Adult (AYA) survivors in Cancer-related Healthcare (REACH).

The research team aims to fill a significant knowledge gap by testing an adaptive re-engagement intervention specifically targeting AYA who have not been engaged in follow-up care for at least 15 months. The researchers will be studying different interventions to see which, if any, enhance appointment making, appointment attendance, and self-management.

"That's why this intervention is important — to address that need to get patients engaged in appropriate follow-up care," Dr. Schwartz said. "The goal is to identify optimal intervention strategies to meet an AYA's individual needs for re-engagement in care and self-management, ultimately reducing morbidities and health disparities in this population."

SMART Tailormade Interventions

Designed as an innovative two-stage sequential multiple assignment randomized trial (SMART), this adaptive reallocation strategy constructs a personalized strategy of intervention on the basis of the individual's response. In other words, the path of intervention is dependent on what the AYA is initially randomized to and then how they respond to that intervention. The researchers plan to enroll 300 participants who were patients at CHOP, Cincinnati Children's Hospital, or the Hospital of the University of Pennsylvania.

The primary outcome of the study is for the AYA to make follow-up appointments, while the secondary outcomes go a step further and are looking at self-management skills, disease management skills, and self-efficacy to take care of their health. Outcomes will be measured after each stage and at nine months.

"There are cancer survivors out there who don't realize the need for survivorship care or don't realize there is help and resources available to give them access to that," Dr. Schwartz said. "We're translating a problem into a real-world intervention that can have meaningful impact."

The researchers will be looking to answer the questions: Was simple untailored nudges enough to get the AYA to make an appointment? And if not, at what level of second stage intervention helped them get to the finish line to make and keep an appointment?

Low Touch vs. High Touch

During the four weeks of Stage 1, some participants will receive a low touch intervention (LTI), which consists of reminder "nudge" text messages and informational resources, while others will be placed in an "enhanced" usual-care group, receiving only written information.

In Stage 2 of the intervention, which lasts four months, everyone will be re-randomized based on their Stage 1 responsiveness — whether they made an appointment or not. The participants will be placed in one of several "arms" at this stage. For example, AYA responders will either be re-randomized to receive a more-of-the-same maintenance type of intervention, or a stepped-up version. Non-responders will only receive a stepped-up intervention.

Stepped-up versions include additional text messages (expanded LTI) or a high touch intervention (HTI). The HTI involves text messages and digital resources, including a personalized survivorship care plan on a mobile-friendly platform like University of Penn's Smart Adult Living After Childhood Cancer (Smart ALACC). These resources provide information tailored to variables such as barriers to care, treatment history and recommendations, and a personal health goal. HTI may also include phone support from a social worker and/or nurse to help overcome barriers. Stage 2 intervention options are intended to encourage long-term engagement of the self-management of LTFU.

"Even if the participant made an appointment based on just a small nudge, we want to continue supporting them," Dr. Schwartz said. "We want to continue to help them understand why coming to an appointment is necessary, what to expect at the appointment, and how to generally manage their health well. Ultimately, to help empower them to engage in survivorship self-management."