A team of researchers at the University of NSW under Professor Claire Wakefield are pleased to share progress their patient-centred program for survivors of childhood cancer.
It has been well documented that over 90 per cent of children who survive cancer will develop at least one serious illness due to treatments administered to their growing bodies.
As survivorship continues to improve, the need for survivors to pay attention to their well-being grows. With that in mind, Professor Wakefield embarked on her important work.
“The Re-engage project
was set up in 2015 with the aim to make sure survivors receive the best possible care after cancer, by improving their knowledge about late effects and engagement with recommended medical follow-up,” said Professor Wakefield.
“Risk-based care of young survivors is important, as many late effects of childhood cancer treatment are modifiable through prevention or early detection and intervention. However, providing comprehensive long-term follow-up care to survivors is difficult as their need for specialised care spans decades and life stages,” she said.
The team, who work out of the School of Women’s and Children’s Health, Behavioural Sciences Unit, Kids Cancer Centre, set out to develop Re-engage as a novel and low-burden offer to young childhood cancer survivors, enabling them the opportunity to identify their personal risk factors and improve their physical and emotional health.
This innovative program utilises state of the art e-technology to alleviate the disadvantages of geography, costs and empower survivors as they transition through care settings. And it’s getting rave peer reviews.
“Within four weeks of its publication in June, our review article was ranked fourth out of 523 articles published in Critical Reviews in Oncology/Hematology and it held the number two position of 26 similarly aged research outputs in the journal,” said Professor Wakefield. “It has since also been cited in six research articles internationally, including Japan and the United States, demonstrating its impact.”
Recruitment is continuing for the Re-engage pilot. To date, 24 survivors have opted in to participate. Of these, 20 have completed all stages of the intervention. Eighteen participants have also completed the second survey (one month post-consultation), and fifteen the final survey (six months post-consultation), which will provide early evidence of the program’s efficacy on survivors’ outcomes, as well their evaluation of the program’s feasibility and acceptability.
“Survivors’ feedback so far is encouraging and suggests the program is acceptable and is very much needed,” said Professor Wakefield. “One female survivor described Re-engage as, ‘…very helpful for me to review my medical follow up, and I appreciated the thorough discussion … I was comfortable and felt supported in the discussions,’ Comments like that are extremely reassuring and confirm we are on the right track.”
The team are currently recruiting through mail-outs to individuals identified through hospital databases, named by oncologists as being disengaged from long-term follow-up care, and convenience sampling through survivors who are contacting the study’s Survivorship Clinical Nurse Consultant.
Pilot protocol publication and registration
In addition to Professor Wakefield’s review article receiving accolades, the Re-engage pilot protocol was accepted for registration on the Australian New Zealand Clinical Trials Registry (ANZCTR) in February 2018 which lead to publication by BMJ Open in the same month.
Read the publication here
Trial and ethics
“Given the success of Re-engage to date, we’ve started discussions about next steps,” Professor Wakefield said. “Specifically, we are designing a Randomised Controlled Trial (RCT) to further evaluate the effectiveness of the program, which will be led by our Post-doctoral Research Fellow Christina Signorelli.”
The team propose that a Re-engage trial will take place with clinicians at the Long Term Follow-Up clinic at Sydney Children’s Hospital, and they have further plans to broaden the trial to other hospitals nationally in future. They are also discussing the exciting possibility of opening up eligibility for the program to include all survivors of childhood cancer.
“As we are nearing our target sample for the Re-engage pilot, we are deliberating key changes for the RCT and are preparing an ethics amendment for the delivery of the RCT,” said Professor Wakefield. “We plan to make one amendment to the proposed RCT by replacing a waitlist control group with an active control group. In this trial we’ll compare response to the ‘Nurse-led’ pilot study with a self-guided form of the intervention.”
Meta-analysis of survivorship care plans
Professor Wakefield and her team decided to launch a meta-analysis assessing the effectiveness of survivorship care plans. This initiative forms part of a more in-depth consideration regarding the most appropriate methods for summarising the treatments survivors have received and their recommended future care.
“There is a lot of work that goes into meta-analysis,” said Professor Wakefield. “We are hoping to finalise it in the coming months and anticipate that once the analysis is complete, we will be able to use these results to ensure that any survivorship care plans we introduce as part of Re-engage will be fully evidence based.”
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