The Recapture Life Trial results: Busting a few myths about young people and online survivorship support

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Not long ago, it would have been impossible to predict the way in which the COVID-19 pandemic would force the rapid expansion of telehealth services.(1) The lesson we have all learnt since then – with just a few eye-rolls about yet another Zoom meeting – is that despite its faults and occasional glitches, telehealth can bridge gaps to accessing much-needed care when patients can’t (or in the middle of a pandemic, shouldn’t) travel into a hospital.

Now is the ideal time to take stock of what we know – and don’t know – about telehealth in oncology settings. As we consider what life and healthcare should look like beyond COVID-19, and where online interventions fit into this picture, we need to understand more about who online supports work best for, and when.

Lost in transition: Reaching young cancer survivors with telehealth

Global pandemics aside, many oncology groups stand to benefit from the way telehealth – or online videoconferencing – breaks down barriers to accessing care and support. Survivors of childhood and adolescent and young adult (AYA) cancer are two such groups.(1,2) AYAs and their families have told us that after finishing treatment, they felt lost without the same level of access to hospital-based supports tailored to their cancer experiences. On the path to long-term survivorship, they wanted more supports to make the transition into life after cancer a positive one.(3)

In response to this need, our team developed an online, group-based cognitive-behavioural therapy (CBT) program for AYA cancer survivors: ‘Recapture Life’ (Resilience and Coping skills for young People To Live well Following cancer).(4) Recapture Life blended the benefits of peer-support and connection, together with evidence-based coping strategies drawn from CBT. Collaborating with colleagues across Australia, we recruited AYAs aged 15-25 years within two years post-treatment from 10 hospitals to a three-arm randomised-trial comparing Recapture Life to a peer-support group control (an active control) and a waitlist.

We’ve shown that Recapture Life was acceptable and feasible(5) to the AYA participants and group facilitators; that clinically-concerning scenarios, such as spikes in distress, could be safely and appropriately managed(6) within the context of the online intervention; that the online group-culture and therapeutic alliance (that is, their rapport with the group facilitator)(7) was positive and supportive; and that AYAs perceived many benefits(5) to participating.

But the question remaining was: what impact did Recapture Life have on AYAs’ quality of life and distress?

Recapture Life Trial results

Our trial’s final follow-up data has just been published in the journal Cancers(8) – and as is often the case it generates both answers as well as many new questions.

We found that AYA cancer survivors who took part in Recapture Life did show improvements in learning adaptive CBT coping strategies, and reported using significantly more of these coping skills after the intervention. However, contrary to our expectations, these coping skills gains did not translate to quality of life improvements. A year after doing the online Recapture Life program, participants were reporting more negative perceived impacts of their cancer, as well as higher anxiety and depression symptoms.

Our study’s findings call into question several commonly-held assumptions about the best ways to deliver mental health support to young people.

MYTH 1. “YOUNG PEOPLE ALL WANT ONLINE SUPPORT”

The young people who chose to take part in this online, peer-group based model of mental health support were highly engaged. We had excellent attendance and low drop-out rates, with 92% completion rates and >75% attending at least 5/6 online sessions. This level of engagement is impressive compared with other forms of online support – such as self-guided online modules, which can have high drop-out rates, especially for younger adults.(9)

Despite this, our trial’s overall opt-in rates were lower than expected, at about 30%. This mirrors the recent experiences of other international studies.(10) More importantly, this calls into question the common assumption that tech-savvy ‘digital natives’ all prefer online support solutions (a finding that echoes our clinical experiences during COVID-19).(1) Online support options are likely to play an important role for some, either as primary treatment or a stepping-stone to accessing in-person treatments. Our data suggest that in a post-COVID-19 world, online supports should be considered just one of many strategies ways to expand access to support.

MYTH 2. “PEER SUPPORT IS ALWAYS HELPFUL”

Cancer support groups remain one of the most common models of support available in the community. Yet we still know relatively little about their appropriateness or effectiveness to manage survivors’ psychological distress. In our trial, we compared Recapture Life to a peer-support group control to better assess the value of this peer support, relative to any added-value of learning adaptive coping skills through Recapture Life.

We found that different survivor subgroups benefited from different kinds of online support. Young people who had finished cancer treatment more recently seemed to benefit more from the online peer-support group control – that is, from just getting the supportive group chat without being actively taught coping skills. On the other hand, young people who had finished cancer treatment further ago got more benefit from learning the CBT skills in Recapture Life.

Further into survivorship, survivors may have more mental or emotional capacity to grapple with CBT strategies as they shift gears into a less cancer-focused life. After all, CBT strategies typically involve thinking about, and approaching, challenging life situations in new ways.

Our clinical experiences running this program also highlighted that peer support may be a double-edged sword – while it can be reassuring and normalising to hear others’ struggles, it can also sometimes add to your worries and amplify your own distress.

MYTH 3. “TEACHING COPING SKILLS IS ENOUGH TO PREVENT MENTAL HEALTH ISSUES”

The AYAs in our program did show gains in adaptive CBT coping skills, yet this did not seem to be enough to buffer against the stresses of life after cancer. While prevention is a critical tool in the bigger picture model of mental health care, our findings fit with other recent international findings suggesting that prevention strategies in mental health may have mixed outcomes. Other ‘macro-level’ social aspects may have a bigger impact on young people’s adjustment after a stressful event like cancer – including how well they are able to stay engaged with work or study, how well engaged they are with social and community supports, as well as socio-economic factors. Brief, skills-based interventions like Recapture Life focus on enhancing an individual’s coping resources. This is important, but likely just one piece of the puzzle in addressing youth mental health.

MYTH 4: “We can design ‘one-size fits all’ survivorship support programs

Another reason our program may not have been as powerful in improving quality of life is that our sample seemed to be genuinely experiencing a lot of ongoing medical challenges into survivorship. A year after finishing the Recapture Life online program, when AYAs were reporting increased negative impacts of cancer and distress, they were also reporting significantly more visits to their general practitioner (GP) and hospital emergency department. Despite eligible participants being in remission at intake, having successfully completed cancer treatment with curative-intent, our sample experienced a number of cancer relapses across the course of the study (n=9), with 5/40 sadly dying.

These sobering observations highlight that survivorship is not smooth sailing for many AYAs.

Of course, helping AYAs to thrive beyond cancer treatment means helping them to engage with carving out a meaningful life beyond cancer, whilst also navigating the medical challenges of early cancer survivorship. Our sample’s experiences highlight how differently AYAs can experience ‘post-cancer survivorship’. As new medical treatments, including precision medicines, continue to evolve, survivorship supports will need to adapt to the increasingly common experience of ‘meta-vivorship’(11) – the experience of living with metastatic, recurring, or ongoing stable disease.

Understanding who online support may work best for, and when they may get the most out of it, is critical to rolling out better models of mental health care for young Australians. The data from our Recapture Life trial shed some light on what might work better for some groups of AYA survivors, and when. A bigger remaining question is how to make sure that the AYAs who most need support, can get it. We are currently partnering with several community organisations to adapt and deliver Recapture Life in community settings, to tackle this very issue.


References:

  1. Sansom-Daly, U.M., and Bradford, N. (2020). Grappling with the ‘human’ problem hiding behind the technology: Telehealth during and beyond COVID-19. Psycho-Oncology, 29(9), 1404-1408. Access online here.
  2. McLoone, J., Wakefield, C.E., Taylor, N., Johnston, K., Sansom-Daly, U., Cohen, J., O’Brien, T., Cohn, R.J., and Signorelli, C. The COVID-19 pandemic: Distance-delivered care for childhood cancer survivors. Pediatric Blood and Cancer.67(12):e28715. doi: Access online here
  3. Wakefield, J McLoone, P Butow, K Lenthen, RJ Cohn (2013) Support after the completion of cancer treatment: perspectives of Australian adolescents and their families. European journal of cancer care, 22(4), 530-539. Access online here.
  4. Sansom-Daly, U.M., Wakefield, C.E., Bryant, R.A., Butow, P., Sawyer, S., Patterson, P., Anazodo, A., Thompson, K., Cohn, R.J. (2012). Online group-based cognitive-behavioural therapy for adolescents and young adults after cancer treatment: A multicenter randomised controlled trial of Recapture Life-AYA. BMC Cancer, 12: 339. URL: Access online here.. DOI: 10.1186/1471-2407-12-339.
  5. Sansom-Daly, U.M., Wakefield, C.E., Bryant, R.A., Patterson, P., Anazodo, A., Butow, P., Sawyer S., McGill, B.C., Evans, H., Cohn, R.J., and The Recapture Life Working Party. (2019). Feasibility, acceptability, and safety of the Recapture Life videoconferencing intervention for adolescent and young adult cancer survivors. Psycho-Oncology, 28(2):284-292. DOI: Access online here.
  6. Sansom-Daly UM, Wakefield CE, McGill BC, Patterson P. (2015). Ethical and clinical challenges in delivering group-based cognitive-behavioural therapy to adolescents and young adults with cancer using videoconferencing technology. Australian Psychologist, Special Issue: Tele-Psychology: Research and Practice, 50(4), 271-278. Access online here.
  7. McGill BC, Sansom-Daly UM, Wakefield CE, Ellis SJ, Robertson E, Cohn RJ. (2017). Therapeutic alliance and group cohesion in an online support program for adolescent and young adult cancer survivors: Lessons from ‘Recapture Life’. Journal of Adolescent and Young Adult Oncology, 6(4), 568-72. DOI: Access online here.
  8. Sansom-Daly, U.M., Wakefield, C.E., Ellis, S.J., McGill, B.C., Donoghoe, M.W., Butow, P., Bryant, R.A., Sawyer, S.M., Patterson, P., Anazodo, A., Plaster, M., Thompson, K., Holland, L., Osborn, M., Maguire, F., O’Dwyer, C., De Abreu Lourenco, R., Cohn, R.J., and The Recapture Life Working Party. (2021). Online, group-based psychological support for adolescent and young adult cancer survivors: Results from the Recapture Life randomized trial. Cancers, 13(10), 2460. Access online here.
  9. Karyotaki, E., Kleiboer, A., Smit, F., Turner, D., Mira, A., Andersson, G., Berger, T., Botella, C., Bretón-López, J., Carlbring, P., Christensen, H., Graaf, E., Griffiths, K., Donker, T,. Farrer, L., Huibers, M., Lenndin, J., Mackinnon, A., Meyer, B., Cuijpers, P. (2015). Predictors of treatment dropout in self-guided web-based interventions for depression: An ‘individual patient data’ meta-analysis. Psychological medicine, 45, 2717-2726. Access online here.
  10. Hagström, J.; Ander, M.; Cernvall, M.; Ljótsson, B.;Wiman, H.W.; Von Essen, L.;Woodford, J. (2020) Heeding the psychological concerns of young cancer survivors: A single-arm feasibility trial of CBT and a cognitive behavioral conceptualization of distress. PeerJ, 8, e8714. Access online here.
  11. Tometich DB, Hyland KA, Soliman H, Jim HSL, Oswald L. Living with Metastatic Cancer: A Roadmap for Future Research. Cancers (Basel). 2020 Dec 8;12(12):3684. doi: 10.3390/cancers12123684. Access online here.

Podcast Show Notes:

Ursula discussed the results from the Reclaim Life Trial in a podcast with Rachael Babin ‘Making Telehealth Human: ‘Who’ it works for and ‘When’ in AYA Survivorship‘. Listen and read the Show Notes here.

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About Author

Dr Ursula Sansom-Daly leads the Mental Health Research Stream within the Behavioural Sciences Unit at the University of NSW. She completed her PhD and Masters in Clinical Psychology at the University of NSW, School of Psychology.   Ursula currently holds prestigious Early Career Fellowships from both the National Health and Medical Research Council (NHMRC) and the Cancer Institute NSW (CINSW), and has been chief investigator on grants >$10.2M in grants. In 2019 she received the International Psycho-Oncology Society (IPOS) Hiroomi Kawano New Investigator Award. Alongside her research role, she is also the Clinical Psychologist at Sydney Youth Cancer Service the leading clinical team for the treatment and care of adolescents and young adults (AYAs) aged 15-25 years with cancer in Sydney. A large focus of Ursula’s research to date has been tailoring evidence-based cognitive-behavioural therapy to the AYA cancer experience, which has culminated in the online, group-based “Recapture Life” program. Ursula is currently working with community organisations such as CanTeen Australia and Cancer Council NSW to implement and disseminate this program beyond hospital walls. Ursula has also recently extended the focus of her research to exploring the needs of young people who may not survive their cancer. She has developed and led several studies to improve how communication and psychosocial support is provided for this group, including the recently-funded Global AYA Accord clinician survey around end-of-life communication, which you can access here.

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