Dr Claire Wakefield 1
Associate Professor Richard Cohn1
Professor Phyllis Butow2
Professor Richard Bryant3
Professor Susan Sawyer 4
Ms Ursula Sansom-Daly3
Dr Pandora Patterson 5
Ms Kate Thompson 6
Dr Antoinette Anazodo7
Dr Belinda Barton8
Dr Michael Osborn 9
Ms Meg Plaster10
1 Sydney Children's Hospital
2 Centre for Medical Psychology and Evidence-based Decision -making, University of Sydney
3 School of Psychology at the University of NSW
4 Centre for Adolescent Health, Royal Children’s Hospital
5 CanTeen National Office
6 Victorian Adolescent and Young Adult (AYA) Cancer Service, Peter MacCallum Cancer Centre
7 Director, NSW AVA Cancer Services, Prince of Wales Hospital
8 Westmead, Children’s Hospital
9 Adolescent and Young Adult Cancer Service Women' and Children's Hospital (Adelaide)
10 Sir Charles Gairdner Hospital Perth
$135,284 (total funding $270,567)
Priority-driven Collaborative Cancer Research Scheme (PdCCRS)
Project completion year
Cancer is 2.1 times more likely to be diagnosed in adolescents and young adults (AYAs) than during the first 15 years of life – and the incidence is growing. Cancer complicates a life stage where coping skills are in their infancy and this can seriously impact a young person’s long-term quality of life (QoL). Though resilient, up to 24 per cent of AYAs develop clinical anxiety, depression or post-traumatic stress disorder after cancer, and a further 22.4 per cent show clinically relevant distress. This distress can limit young people's capacity to responsibly adhere to medical follow-up care, which is a recognised clinical challenge (non-adherence rates range from 27 per cent to 60 per cent in AYAs).
Pilot studies conducted by the research team show that this is a population which may benefit from, and are receptive to, psychological interventions such as support groups. Despite this, Australians report that supportive care resources are lacking in community and primary health services, particularly for the critical off-treatment time-point when access to formal support through the hospital is often withdrawn.
Numerous barriers to care exist for this vulnerable group, yet despite documented need, no evidence-based age-appropriate psychological interventions for young survivors currently exist. The effective dissemination of psychological support to the growing numbers of young Australian cancer survivors is urgently needed.
To meet this need, this multidisciplinary research team has developed ‘ReCaPTure LiFe’ (Resilience and Coping skills for young people To Live well Following cancer). ReCaPTure LiFe is an online psychological intervention to improve quality of life and prevent distress in AYAs (aged 15 to 25) moving into survivorship.
The program is delivered in six weekly, 90-minute videoconferencing modules facilitated by a psychologist, with three to five AYAs per group. Each AYA also nominates a support person who receives a two-hour training session and weekly email-based support. Anchored in skills-based cognitive-behavioural principles, each module is tailored to the key post-treatment concerns of AYAs, identified in a large pilot study (N=70). This selective prevention approach is supported by research demonstrating the efficacy of CBT in treating adolescent anxiety and depression. CBT programs have also been successfully adapted for AYAs with chronic illness.
The pilot work suggests that AYAs with cancer are receptive to implementing CBT skills into their lives. The strengths-based approach recognises the fact that young people are resilient and competent. Interventions that do not acknowledge this may only benefit a small subset of (clinically distressed) patients, whereas ReCaPTure LiFe builds on psychological strengths while mitigating negative symptoms in the broadest possible group of patients. The program’s format, timing and delivery have been shaped by extensive consumer feedback. This Phase II randomised controlled trial will assess the efficacy of ReCaPTure LiFe in improving QoL in young cancer survivors. Participants will include 90 AYAs randomised to three arms: ReCaPTure LiFe, a non-directive online peer support group, or a waitlist control.
The inclusion of a peer support group as a control (delivered in an identical manner to that used in ReCaPTure LiFe, i.e. online with three to five participants per group and the same facilitator) complies with methodological gold standards and will ensure a rigorous assessment of the specific CBT features unique to ReCaPTure LiFe. The feasibility of implementing ReCaPTure LiFe nationwide will also be stringently assessed. It is hypothesised that participation in ReCaPTure LiFe will improve QoL in young cancer survivors compared to both online peer support group and a wait list control, as well as proving feasible and economical. This trial is an urgently needed next step to improve mental health outcomes of a vulnerable population.