Bridging the gap between hospital and home: Harnessing online technologies to connect young cancer survivors with the support they need

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Entry for:
Image1467878096?1467878096  You Can Innovate Award

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1. Summary of your project

Everyone knows it’s tough surviving adolescence. Imagine facing cancer at the same time. In Australia, one adolescent or young adult aged 15-29 is diagnosed with cancer every 5 hours.1 Research addressing mental health in adolescent/young adult oncology is an emerging field, lagging in strategic research investment in Australia. Without early intervention, post-cancer distress can impair young survivors’ capacity to develop into well-functioning adults, negatively impacting their peer and romantic relationships, and study/work achievements.2


Currently, young survivors’ quality of life outcomes are worse than those of both younger children and older adults with cancer.2 Given that the adolescent/young adult years are already the peak time of onset for mental health disorders,3 the addition of cancer-related stressors amplifies their risk. Indeed, 24% of young survivors show clinical anxiety or depression many years later.4 When cancer treatment is completed, survivors are vulnerable to increased psychological distress as they attempt to return to ‘normal’ within their communities. Currently, little support is available in the community to help young people at this time.


I have developed a new, online, evidence-based psychological support program (“Recapture Life”) to help young people adapt well to ‘life after cancer’ by teaching coping skills that build people’s resilience after stressful life events.5 The Recapture Life online program is ‘manualised’, facilitating its delivery by a range of trained professionals to increase the reach of this support.


This project will involve a new level of collaboration between researchers and community organisations to roll-out the Recapture Life program to young cancer survivors across Australia. This project will achieve the dual outcomes of, (1) enhancing the capacity of the workforce in the ‘adolescent/young adult space’, by equipping more community-based professionals with the skills to support young survivors, and (2) making world-class psychological support available to all young Australian cancer survivors.


REFERENCES

1.    Australian Institute of Health and Welfare, Cancer in adolescents and young adults in Australia 2011, in Cancer series no. 62. Cat. no. CAN 592011, AIHW: Canberra.

2.    Sansom-Daly U, Wakefield C. Distress and adjustment among adolescents and young adults with cancer: An empirical and conceptual review. Transl Pediatr 2013;2167-97.

3.    Kessler RC, et al.  Prevalence, Severity, and Comorbidity: 12-Month DSM -IV Disorders in the National Comorbidity Survey Replication. Arch Gen Psychiat 2005;62:617-27.

4.    Seitz D, et al. Postraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. Eur J Cancer 2010;46: 1596-606.

5.    Sansom-Daly UM, et al: 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 2012, 12:339.

2. Describe your approach and any preliminary findings.

When do young cancer survivors need support?

My team’s research has shown that young survivors’ distress can peak following cancer treatment completion, as they try to reintegrate back into ‘normal life’ with reduced hospital-based supports.1 Indeed, 24% of survivors experience anxiety and depression post-treatment, that can last for years without intervention.2 These adverse mental health outcomes may feed into the overwhelming societal impact of youth cancer: in Australia, adolescent/young adult cancer results in 8,785 disability-adjusted life years lost, comparable to the burdens of cardiovascular disease (7237 years) and suicide (14,954 years).3 Targeting the vulnerable post-treatment period may protect survivors from years of future distress and poor-functioning.


What kind of support is best?

Young survivors want help to develop the psychological skills to navigate life after cancer.4 My research has shown that support that involves teaching coping strategies, over several sessions, is the most effective support in reducing distress and improving quality of life.5 Currently, cognitive-behavioural therapy (CBT) is the gold-standard in promoting resilience through adaptive skills.6 CBT trains individuals to recognise, and change, unhelpful thinking styles and behaviours underpinning their distress. It has been successfully used to prevent, and treat, anxiety and depression among cancer-free young people.7,8 Group-based formats offer a cost-effective model for delivering CBT, which capitalise on the normalising effects of peer-support that young people value.9 For young survivors, group-formats also address the sense of social-disconnection often experienced during treatment.9


Recapture Life: A new online program

‘ReCaPTure LiFe’ (Resilience & Coping skills for young People To Live well Following cancer) is a new online support program for cancer survivors aged 15-25.10 It involves survivors connecting across 6x1.5hour weekly, small-group sessions delivered using innovative online video-conferencing (like group-‘Skype’; See Appendix 1; Video-conferencing screenshot). A trained facilitator (e.g., psychologist) leads each session, supporting survivors to develop coping strategies related to specific survivorship-related concerns (Appendix 2: Session overview).


Preliminary findings

I have led a national, multi-site, randomised-controlled trial evaluating Recapture Life.10,11 This trial showed that the Recapture Life program is feasible, acceptable, meets survivors’ needs for psychological support, and reduces their distress over time.11 We delivered online groups across time-zones, to survivors living >4000kms apart.11 We also published world-first guidance on how clinicians can appropriately address unique cancer-related concerns in online, group contexts.12,13 This has laid solid foundations for expanding the use of online interventions in supporting Australian survivors.


The next phase

Despite these promising data, the lack of mental-health professionals in Australian adolescent/young adult oncology is a significant barrier to delivering this model of survivorship support. This next phase will involve building on new research-community partnerships to enable a large-scale dissemination of Recapture Life.

Using gold-standard implementation science methodology, we will work with community organisations to, (1) train community-based professionals to deliver Recapture Life; (2) deliver Recapture Life groups to a diverse population of adolescent/young adult survivors across Australia; (3) evaluate Recapture Life’s efficacy in improving survivors’ outcomes (e.g., distress); and (4) measure the success of the community implementation itself (e.g., organisational barriers to delivery). (Appendix 3: Trial flowchart).


REFERENCES

1.  Sansom-Daly UM, Wakefield CE: Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review. Transl Pediatr 2013, 2:167-197.

2.  Seitz D, et al: Posttraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. Eur J Cancer 2010, 46:1596-1606.

3.  Begg S, et al. The burden of disease and injury in Australia 2003. Cat. no.PHE 82. Canberra:AIHW.

4.  Thompson K, Thomas D: A facilitated peer support and education based survivorship group for adolescents and young adults living with cancer. Building Cancer Support Groups. Melbourne: onTrac@PeterMac Victorian Adolescent & Young Adult Cancer Service for Cancer Australia; 2009.

5.  Sansom-Daly UM, et al: 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 2012, 12:339.

6.  Butler AC, et al: The empirical status of cognitive-behavioral therapy: A review of meta-analyses. Clin Psychol Rev 2006, 26(1):17–31.

7.  Cartwright-Hatton S, et al: Systematic review of the efficacy of cognitive behaviour therapies for childhood and adolescent anxiety disorders. Br J Clin Psychol 2004, 43(4):421–436.

8.  Compton SN, et al: Cognitive-Behavioral Psychotherapy for Anxiety and Depressive Disorders in Children and Adolescents: An Evidence-Based Medicine Review. J Am Acad Child Adolesc Psychiatry 2004, 43(8):930–959.

9.  Roberts CS, et al: A support group intervention to facilitate young adults' adjustment to cancer. Health Soc Work 1997, 22(2):133–141.

10. Sansom-Daly UM, et al: 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 2012;12: 339.

11. Sansom-Daly UM, et al: Harnessing e-health to promote resilience in survivorship. Invited plenary. Presented at the Teenage Cancer Trust 8th International Conference on Teenage and Young Adult Cancer Medicine, London, UK, 7th July, 2014.

12. Sansom-Daly UM, et al: Consensus Among International Ethical Guidelines for the Provision of Videoconferencing-Based Mental Health Treatments. JMIR Mental Health 2016,3(2):e17.

13. Sansom-Daly UM, et al: Ethical and clinical challenges in delivering group-based cognitive-behavioural therapy to adolescents and young adults with cancer using videoconferencing technology. Aust Psychol 2015,50:271–278.

3. What is the impact of your research to help cancer patients?

Quality, not just quantity, of life years saved

Recent medical advances have led to a growing population of adolescent/young adult cancer survivors.1 Aiming for physical survival for these young people in not enough, however. Adolescents/young adult patients’ youth during their cancer experience means that they have many years of life in which to deal with the aftermath of cancer. The skills and life experiences that young people accrue during this important developmental stage are critical to their ability to transition into healthy, well-adjusted adults.2


This cancer burden coincides with the peak time of onset of mental health disorders - the time when anxiety and depression diagnoses are most likely to emerge.3 Indeed, over a decade post-diagnosis, 24.3% of adolescent/young adult cancer survivors have clinical depression or anxiety, almost twice the rate of their healthy peers.4 Providing survivors with the right support, at the right time in their cancer journey, is critical to preventing these long-term mental health impacts from emerging. Timely intervention means not only reducing survivors’ distress in the early months post-treatment, but also protecting their ability to function well into adulthood for years to come.


Barriers to accessing support


Significant leaps have occurred in Australia in the provision of best-practice, adolescent/young adult-specific

healthcare in the last decade, with the establishment of the Australian Youth Cancer Services. However, while Youth Cancer Centres have expanded access to age-appropriate cancer care during the treatment phase, gaps remain in the psychosocial support of survivors once they return home to their communities. Many survivors live hundreds of kilometres from their treatment centres,5 and there are only 0.83 psychologists per 10,000 people available within regional/rural Australian communities,6 and only six Youth Cancer Services clinical psychologists across Australia. Consequently, providing timely, substantial support to the growing population of young cancer survivors within the existing service-delivery model is challenging.


Improving clinical practice

Recapture Life is an online, evidence-based program to develop young survivors’ resilience. It is designed to reach survivors living even the furthest distance from metropolitan hospital centres: its online nature means that it can bridge the barriers of geographical distance, as well as of the lack of psychologists trained in youth cancer across the country. The future of psychosocial support for young survivors in Australia will rely on our capacity to make evidence-based programs such as Recapture Life more widely available.


Fortunately, there is a strong network of community organisations in Australia dedicated to supporting young people with cancer, including CanTeen, Redkite, and the Cancer Council. By working collaboratively with diverse organisations supporting young survivors in the community, this project will build upon the networks and grass-roots knowledge of these organisations to expand the reach of the Recapture Life program. This collaborative process will ensure that not only does the standard ‘menu’ of survivorship care improve for adolescent/young adult survivors across Australia, but also, that the workforce itself will be up-skilled and strengthened, with a wave of new clinicians capable of delivering world-class, evidence-based psychological support to young survivors, regardless of their locality.


REFERENCES

1.    Levi F, et al: Trends in cancer mortality at age 15 to 24 years in Europe. Eur J Cancer 2003, 39(18):2611–2621.

2.  Millar B, et al: Emerging adulthood and cancer: how unmet needs vary with time-since-treatment. Palliat Support Care 2010, 8(2):151–158.

3.    Kessler RC, et al: Prevalence, severity, and comorbidity of 12-month DSM-IV disorders in the National Comorbidity Survey Replication. Arch Gen Psychiat 2005, 62:617-627.

4.    Seitz D, et al: Posttraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. Eur J Cancer 2010, 46:1596-1606.

5.    Daniel G, et al: Accommodation in pediatric oncology: parental experiences, preferences and unmet needs. Rural Remote Health. 2013;13(2):2005.

6.    Australian Institute of Health and Welfare. Australian health expenditure by remoteness: A comparison of remote, regional and city health expenditure. Health and welfare expenditure series no. 41. Cat. No. Hwe 50. Canberra: AIHW, 2011.

4. What ideas would you like to explore, or currently are exploring, to take this research further?

Strengthening the adolescent/young adult workforce

In order to broaden the reach of gold-standard care to adolescents/young adults with cancer across Australia, greater capacity is needed in the community workforce. Developing world-class intervention programs within the academic sector is only the first step to improving the mental health of young survivors. This project has a strong focus on developing resources to train diverse, community-based professionals to deliver Recapture Life. This will include experiential, in-person training workshops, written manuals providing guidance around program-delivery, and validated clinical supervision/consultation processes to support facilitators. Up-skilling more professionals will increase the speed of disseminating Recapture Life, and will leave the workforce stronger and more psychosocially-capable into the future. 


Uncovering the mechanisms of research translation

There is, on average, a lag of 17 years between mental health research discoveries, and the implementation of new knowledge into clinical practice.1 This project focuses on measuring the process of research translation, in order to inform and expedite the process of implementing future interventions into practice in the wider community. Consequently, this project will be assessing not only ‘what’ (e.g., what improvements does Recapture Life lead to?) but also ‘how’ (e.g., how does Recapture Life need to be tailored to suit a community-delivery model?). Exploring these complex processes will assist in closing the implementation gap between research evidence and real-world implementation in psycho-oncology for young people.


Application to other illnesses

The evidence-based principles underpinning Recapture Life hold significant potential to benefit other vulnerable groups. I will develop sideways collaborations across disease specialties within the Sydney Children’s Hospital Network to explore how tailoring Recapture Life could address the needs of young people with other serious illnesses, who experience similar developmental challenges.2 We are also adapting Recapture Life to enhance the resilience of parents of younger children with cancer/serious illness (see Q5, Publications).


REFERENCES

1.    Bryant J, et al: Examining and addressing evidence-practice gaps in cancer care: a systematic review. Implement Sci 2014, 9:5908-9.

2.    Sansom-Daly UM, et al: A Systematic Review of Psychological Interventions for Adolescents and Young Adults Living With Chronic Illness. Health Psychol 2011, 31(3):380-393.

5. Please demonstrate your track-record. Share a selection of publications, citations, awards etc.

Selected Publications (27 total; 13 first author, 3 senior author)

1.   Sansom-Daly, U.M., McGill, B.C., Anazodo, A.C., Plaster, M., Maguire, F., O’Dwyer, C., Ellis, S.J., Robertson, E., Cohn, R.J., Wakefield, C.E. (2016). The Reality of Relapse: Impact of Cancer Relapse on Survivorship Interventions and Patient-Reported Outcomes Data. Pediatric Blood & Cancer, 63(8):1492-3. doi: 10.1002/pbc.26001. 

2.  Sansom-Daly, U.M., Wakefield, C.E., McGill, B.C., Wilson, H.L., Patterson, P. (2016). Consensus Among International Ethical Guidelines for the Provision of Videoconferencing-Based Mental Health Treatments. JMIR Mental Health, 3(2): e17. doi:  10.2196/mental.5481

3.    Sansom-Daly, U.M., Lin, M., Robertson, E.G., Wakefield, C.E., McGill, B., Girgis, A., Cohn, R. (2016). Health literacy in adolescents and young adults: An updated review. Journal of Adolescent and Young Adult Oncology, 5(2), 106-118. doi:10.1089/jayao.2015.0059.

4.    Sansom-Daly, U.M., McGill, B.C., Kasparian, N., Patterson, P., Muscara, F. & Wakefield, C.E. (2016). Navigating the impact of serious illness across the family system using evidence-based therapeutic approaches. In R.G. Menzies, M. Kyrios & N. Kazantzis (Eds.), Innovations and future directions in the behavioural and cognitive therapies (pp.176-181). Queensland: Australian Academic Press.

5.   Sansom-Daly, U.M., Wakefield, C.E., McGill, B.C., 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, 50, 271–278. doi:10.1111/ap.12112. **NB: Invited paper for the Special Issue on Tele-Psychology and Mental Health: Research and Practice.

6.   Wakefield, C.E., Sansom-Daly, U.M., McGill, B.C., Ellis, S., Doolan, E.L., Robertson, E., Mathur, S., Cohn, R.J. (2016). Acceptability and feasibility of an e-mental health intervention for parents of childhood cancer survivors: “Cascade”. Supportive Care in Cancer, 24(6):2685-2694.  doi:10.1007/s00520-016-3077-6

7.   Sansom-Daly, U.M., Wakefield, C.E. (2013). Distress and adjustment among adolescents and young adults with cancer: An empirical and conceptual review. Translational Pediatrics, 2(4):167-197.

8.    Wakefield, C.E., Patterson, P., McDonald, F., Wilson, H., Davis, E., Sansom-Daly, U.M. (2013). Assessment of psychosocial outcomes in adolescents and young adults with cancer: A systematic review of available instruments. Clinical Oncology in Adolescents and Young Adults. 3: 13–27.

9. 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.

10. Sansom-Daly, U.M., Peate, M., Wakefield, C.E., Bryant, R.A., Cohn, R.J. (2012). A Systematic Review of Psychological Interventions for Adolescents and Young Adults Living with Chronic Illness. Health Psychology, 31(3),380–393.


Recent Awards (10 total; combined value $28.8K)

2014                The Premier’s ‘Rising Star’ PhD Student Award, Cancer Institute NSW (Value: $10,000)

2014                The Tracey Goodall Early Career Award, Australian Association for Cognitive and Behavioural Therapy (AACBT) (Value: $2000)

2014                The TOW Research Awards, Open Senior Category, Health-Science Alliance (Value: $3000)

2014                CanTeen Australia Study Scholarship (Value: $5000)

2012                Faculty of Science Postgraduate Research Competition School of Psychology Prize (Value: $1000).

2011               The Adam J Berry Memorial Fund. Awarded to one early-career Australian researcher each year by the Australian Academy of Science and US National Institutes of Health Foundation to assist them to gain research experience and forge collaborations by working with a researcher of their choice at one of the National Institutes of Health (NIH), USA. 


Selected Recent Grants/Research Support (CI on 9 grants; total value >$4,300,000)

  1. Wakefield, C.E., Cohn, R.J., Girgis, A., Butow, P., King, M., Patterson, P., Wallace, H., Sansom-Daly, U. (CIH) Development and implementation of real-world, sustainable, interventions to prevent chronic physical and mental health conditions in paediatric cancer survivors and their families. 2016-2020, Cancer Council NSW, plus 20% additional funding support from UNSW. $2,694,894.
  2. Sansom-Daly, U.M., Wakefield, C.E., Cohn, R.J., Wiener, L., Girgis, A., Sanson-Fisher, R., Patterson, P., Donovan, L., Anazodo, A., Drew, D. (CIA) Breaking the silence around end-of-life: Pilot testing a new advance care planning guide for adolescents and young adults with cancer. 2015-2016 (12 month). Co-funded by the Australian & New Zealand Children’s Haematology & Oncology Group (ANZCHOG) and CanTeen Australia. $59,974.16.
  3. Sansom-Daly, U.M. (CIA) Novel approaches to address barriers to care for adolescents and young adults with cancer. 2016-2020. National Health and Medical Research Council (NHMRC) Early Career Fellowship. $188,786.40.
  4. Sansom-Daly, U.M. (CIA) Novel approaches to address barriers to care among adolescents and young adults with cancer: Intervention research targeting vulnerable populations. 2015-2017. Cancer Institute NSW Early Career Fellowship. $179,796
  5. Wakefield, CE., Cohn, RJ., Girgis, A., McCarthy, M., Grootenhuis, M., Sansom-Daly, U. (CIF) A multicentre phase II randomised controlled trial of a parent/carer-targeted intervention to improve quality of life in families of young cancer survivors. 2014-2016. Cancer Australia. $457,352.65
  6. Anazodo, A., Sansom-Daly, U.M., Patterson, P., McCowage, G. (CIB) Development of a better model of care for adolescents and young adults with cancer. Is Tele-health an effective means of implementing psychosocial support to AYAs with cancer? 2014-2016. Kids Cancer Alliance, Cancer Institute NSW Translational Research Centre. $300,000
  7. Wakefield, CE, Cohn, RJ., Butow, P., Bryant, R., Sawyer, S., Sansom-Daly, U. (CIF) ‘ReCaPTure LiFe’: A phase II randomised trial of a psychological intervention to support adolescent and young adult cancer survivors. 2012-2013. Co-funded by Cancer Australia and Beyond Blue. $270,566.50


Comments

2
Brittany McGill
almost 2 years ago

Very proud to be part of this important project. This funding will allow us to roll the program out to more young people in need.

Eden Grace Robertson
almost 2 years ago

Awesome project! This funding will allow access to the program that will allow many young people to benefit. Good luck!