How the Program Works
Step One A clinical nurse consultant who specializes in childhood cancer survivorship used a custom-developed online triage tool to collect each survivor’s medical and updated family history, and current physical and mental health information. These were used to assign the participant to a level of care and develop a tailored survivorship care plan for that participant.
Step Two A medical case review of the data collected was conducted by a multidisciplinary team comprising of pediatric and adult oncologists, a nurse, a general practitioner, a psychologist, and a social worker. This team developed personalized follow-up plans for all participants, who were assigned to primary services with input from specialists. Where appropriate, high-risk survivors were referred to specialist care.
Step Three Survivors received feedback in a second consult with the clinical nurse consultant and the multidisciplinary team. This included specialist referrals and recommended screening and lifestyle changes. The clinical nurse consultant offered potential solutions to barriers to care that were raised in the first consultation. Additionally, participants were educated regarding their personal risks of late cancer effects, as well as shared resources to foster ongoing self-management of care.
Finally, with the permission of the participants, a summary letter that included the participant’s personalized care plan was shared with their general practitioner and other specialists, as applicable. As part of Re-engage, all participants were encouraged to have a regular general practitioner.
The most common reason survivors gave for not continuing with their original follow-up plan was the distance they had to travel to clinic, and some also felt they did not need survivorship care because they were no longer experiencing health problems. After participating in the pilot study, 92% of survivors reported that the intervention had been beneficial. Furthermore, at the 6-month follow-up, 100% of the participants found the results beneficial. Some of the survivors appreciated the information they received about their cancer history, healthcare needs, and associated lifestyle changes. Others liked the access to specialist care that Re-engage organized for them, reporting that the ability to receive attention remotely important for their continuity of care.
A limitation of this study was that all participants were Australian-born and English-speaking. Non-English speaking and culturally diverse populations may have additional barriers to care, therefore the researchers recommend further studies of the Re-engage concept. However, this study was able to include survivors with limited access to care, such as those who lived remotely and those who had moved since undergoing treatment at Sydney Children’s Hospital. “Given the similarities in globally reported barriers to accessing survivorship care, Re-engage may be implemented in other international settings, with some modifications to suit local resources and practices,” reported the researchers.
Despite a well-established preference for oncologist-led care, the participants in this pilot study were highly supportive of the program.
“Re-engage has the potential to empower survivors in coordinating their complex care, improving their long-term engagement, and increasing their satisfaction with care,” the researchers concluded. “Ultimately, Re-engage may also minimize the long-term burden associated with treatment of childhood cancer.”
1. Signorelli C, Wakefield CE, Johnston KA, et al. Re-engage: a novel nurse-led program for survivors of childhood cancer who are disengaged from cancer-related care. J Natl Compr Canc Netw. 2020;18(8):1067-1074. doi:10.6004/jnccn.2020.7552