Health psychology and behavioural science is at the heart of good clinical practice – and research – in oncology. The process of curing cancer and transitioning patients to a state of remission is primarily a medical endeavour. However, the bigger mission of the oncology field – to carry patients from diagnosis through to survivorship (or end-of-life) in a way that preserves their dignity, autonomy, minimizes distress, and maximizes quality of life – requires an arsenal of evidence-based behavioural strategies and psychosocial supports.
The Australasian Society for Behavioural Health in Medicine (ABSHM)’s annual scientific meeting last week in Sydney proved a stimulating forum to consider these issues. Across the tightly-packed program were several key take-aways that will be of interest to the oncology community…
Theme 1: We can turbo-charge our supportive care services with digital technologies (but we need better evidence)
Patient-reported outcomes – or ‘PROs in practice’
Digital technologies have been hailed as a way to overcome numerous barriers to care. Digital health in all its many guises was a strong repeat performer across the conference. Professor Frank Penedo from the University of Miami set the scene at the conference’s first plenary with a big picture view of his team’s successes implementing electronic patient-reported outcomes (PROs) into practice with adult ambulatory cancer patients at Northwestern University. Prof Penedo highlighted a compelling reminder for the rationale for embedding PROs in practice: citing his team’s previous work finding that simply the act of reporting on your symptoms using PROs can lead to statistically and clinically-meaningful improvements on health-related quality of life. They also found tantalizing data indicating that patients randomized to monitor and self-report their symptoms also experienced a 5-month survival advantage. Importantly, clinicians felt the process added value to their clinical care, and that their awareness of a patient’s symptoms ‘changed the flavor of their consultations’. Patients also felt generally positive about the process – provided that it would be enhancing, and not replacing, face-to-face care. Professor Penedo’s ultimate message was that PROs enabled care to be tailored and personalized; making patient care ‘value based’.
Telehealth for long-term child cancer survivors
The potential for digital health featured prominently in other sessions with an impressive variety of applications. Dr Jordana McLoone from Sydney Children’s Hospital and UNSW Sydney reported on progress their new ‘Re-Engage’ nurse-led telehealth intervention has made in re-connecting the approximately 50% of disengaged long-term childhood cancer survivors to appropriate health-related follow-up in survivorship. This brief intervention has led to significant improvements in survivors’ perceived self-efficacy to manage their health and healthcare. As a result of the intervention, over 50% of the survivors were also found to require specialist referrals for their cardiac health, their metabolic health, and over 80% for their mental health. This speaks to the huge gaps in care that exists, unseen, if these survivors remain disengaged from the system. New models of care like Re-Engage seek to shift the focus to the prevention, rather than the treatment, of late effects to reduce this burden.
‘There’s an app for that…’
The potential (and, potential limitations) of app-based eHealth interventions was also examined. Elizabeth Hernandez from Dr Danette Langbecker’s group at the University of Queensland described herself as ‘a radiation therapist with a question’. Her question? Whether app-based interventions can help cancer survivors self-manage their pain, psychological distress, fatigue and sleep. Ms Hernandez’s systematic review found only seven mobile app interventions targeting self-management that had been evaluated, and only two of these seven studies conducting a randomized controlled trial. Their review cautiously suggested there may be emerging evidence to support the benefit of apps for self-management: the most common symptom to improve was fatigue (4/7 studies), followed by pain (3/7), and sleep (2/7) with only one intervention leading to reductions of distress.
Given the thousands of health-related apps currently listed on iTunes, the fact that only 7 have been evaluated may be cause for concern
However, we still lack data about who is accessing these apps, who is using them, and why? Unfortunately, it’s also likely that the technology has outpaced our development of evidence here: given the thousands of health-related apps currently listed on iTunes, the fact that only 7 have been evaluated may be cause for concern. More research is needed here!
Online video groups for AYA cancer survivors
At the other end of the spectrum, in my group, we have found promising results using a more intensive eHealth intervention to address mental health in AYA cancer survivors. Using a six-session group-based videoconferencing model, the Recapture Life (for 15-25 year old survivors) and Re-claim Life (for 25-40 year olds) interventions have transformed the traditional cancer support group into the digital realm (akin to a virtual, group Skype). Our current work partnering with community organisations (Canteen, Cancer Council NSW) to deliver these groups has broadened the reach of these programs, and is a new model for building capacity in evidence-based psycho-oncological care tailored towards AYAs. Things we have learned through the implementation process have included: being very open to the benefits of reshaping/re-branding interventions to fit the model and image of your partnering organisations; the need to leave plenty of time to allow for repeat training sessions when staff (in either organization) change, and building in time and flexibility to adapt training, facilitator, and participant materials.
Theme 2: Understanding what works – and doing more of it
Chronic pain (and oncology)
Professor Louise Sharpe, from the University of Sydney, delivered an outstanding plenary critically examining the evidence base for psychological therapies for chronic pain. This was a tour de force of a condition that affects, it turns out, one in five Australians. And while chronic pain is not the specialty of most oncology health professionals, these data are worth paying attention to as chronic pain can develop following any type of injury, including surgery – so it’s likely that anyone practicing in oncology can recall survivors who have continued to experience ongoing, unexplained, and debilitating pain even after their cancer has been cured and treatment completed.
(And as an aside, emerging data from colleagues overseas suggests that persistent pain is an important trigger and maintaining factor for fear of cancer recurrence).
The good news to emerge from Prof Sharpe’s plenary is that we have several evidence-based psychological therapies that work in treating chronic pain. The leader of these has been cognitive behavioural therapy (CBT); and in a large dismantling study Prof Sharpe’s team has been able to show that ‘cognitive’ elements of CBT (i.e., the skills related to identifying and tackling problematic, unhelpful thinking styles) are actually critical to the success of these treatments. Behavioural strategies (simply getting back into activities) are not enough without it. Emerging evidence suggests that CBT, as well as ‘third-wave’ cognitive-behavioural therapies such as Acceptance and Commitment Therapy (ACT) and mindfulness-based therapies may also be similarly effective in different circumstances, Prof Sharpe argued. For example, evidence suggests mindfulness-based therapies may be more effective for chronic pain patients with a history of depression; by contrast, other evidence suggests that ACT may be more effective for chronic pain patients who are older, whereas younger patients may respond better to CBT.
Importantly, these are all interventions where there is a lot of existing expertise and capacity within clinical psycho-oncology services. Deploying them effectively when faced with a survivor experiencing chronic pain is critical.
The theme of analysing (and enhancing) effective intervention components was one also touched on by Prof Frank Penedo in his plenary on Day 1, when he outlined his team’s work culturally-adapting a mindfulness-based stress reduction (MBSR) intervention for Hispanic/Latino prostate cancer survivors. Working together with consumers, his group tailored traditional MBSR skills components to enhance several aspects, such as ‘familism’, directly addressing the cultural stigma around cancer (which he equated to the stigma around HIV), and enhancing the experiential/role play exercises related to communication with family. His team found significant improvements in sexual and physical wellbeing as a result of this program – an encouraging result for the ability for effective psychological interventions to be tailored and adapted in culturally-appropriate ways.
Theme 3: Relationships matter
Taking care with (and of) our patients
The notion that relationships matter in clinical oncology comes as no surprise. This idea was reflected back to us across several disparate presentations across the conference. Prof Gaston Arnolda from the Macquarie University NHMRC Centre for Research Excellence in Implementation Science in Oncology unpacked a large UK-based dataset on patient experience surveys. Two factors seemed very strongly predictive of patients being more satisfaction with their care: being able to easily contact a specialist nurse, and their perception that the clinician had the right paperwork with them at their most recent visit. At their heart, both these items seem reflective of patients’ perceptions of their clinical relationships with their clinicians and team: that there is someone trusted and reliable at the other end of the phone that they can contact; and that the expert treating you cares enough (and is prepared enough) to be on top of the details when they meet with you. These suggest some interesting (and seemingly straightforward) tweaks to improve patients’ experiences of care.
End of life communication
Several fantastic PhD researchers also highlighted important aspects of the therapeutic relationship with young people. Ms Holly Evans, from UNSW Sydney, presented fascinating data showing that among adolescents and young adults with cancer, experimentally priming a greater sense of relationship-attachment helps them feel more inclined to approach a conversation around end-of-life. In clinical practice, health-professionals may need to focus on actively fostering a sense of ‘secure attachment’ for young people with their treating team, to lay a good foundation when end-of-life conversations need to happen.
Health literacy in young people
Ms Danielle Gessler, from the University of Sydney, also presented a new model of health literacy among AYAs, highlighting ways in which it is shared across and between family members. Her model is supported by a recent qualitative study she has undertaken, and will help underpin efforts to develop training for health-professionals working with this cohort.
It is more than just good medicine that goes into the treatment of human disease
Prof Frank Penedo noted on Day 1 that cancer survivorship research had only really received serious attention over the past 15-20 years. This makes cancer survivorship research itself a field in its adolescence. From the diverse array of presentations at ASBHM 2020 I’d say the field is making solid headway towards addressing some of the pressing issues that remain – like mental health, late effects and multi-morbidity, and barriers to care. The prominence of cancer research at ASBHM was encouraging, and suggests that our field is continuing to embrace a cross-pollination of scientific and clinical disciplines – with the eventual goal of improving patient care.
As after all, to quote Dr Jordana McCloone on ASBHM’s final day: it is more than just good medicine that goes into the treatment of human disease.