By Dr Haryana Dhillon – University of Sydney.
The second Victorian Psycho-Oncology Research Conference, held recently in Melbourne, addressed the theme of psycho-oncology across the lifespan.
Prof. Jim Bishop, Executive Director of VCCC, set the scene indicating that we know many people diagnosed and treated for cancer are still not receiving the specific information they need about their disease and treatment to help them self-manage acute and long-term side effects. With a stellar line up of invited international speakers in Prof James Coyne, Prof Tom Hack, A/Prof Christopher Nelson, and Assistant Professor Christopher Recklitis, it was expected to be a lively and engaging meeting. The international and national faculty did not disappoint.
Routine Screening: for and against
Prof. Coyne presented the case against routine screening for distress in oncology patients. His arguments against screening include the poor performance of many measures of distress (anxiety and depression), additional burden on nursing and social work staff conducting screening, and ultimately the perception that those most in need of psychological support and intervention are still not receiving this in the oncology setting. Overtime it has become clear that a diagnosis of cancer disrupts mental health services and provider relationships that are in place pre-diagnosis for existing mental health challenges.
As time passes people resume their pre-existing mental health services rather than engage with care within cancer centres. It is clear that the onus is on us as oncology health professionals to minimise this disruption and ensure that mental health issues are managed with strong integration between the cancer centres, general practice and community care providers. The discussion of routine screening for distress rounded off the conference with a plenary panel discussion. It was clear that distress is important, if we are going to screen for distress better measures are needed, and we must ensure that funding pressures do not result in less supportive care services for the patients most in need.
Living with cancer across the lifespan
The changing needs of people living with cancer at different life stages was eloquently highlighted by a number of speakers. Prof. Hack emphasised the different impact of cancer and its treatment across the lifespan. In childhood cancers it is physiology and development that are compromised, while in adolescent and young adults it disrupts social interaction and self-esteem associated with the period during which they would usually be establishing themselves as independent adults, in mid-life it is concern about family, finances, and relationship challenges predominate; while for the over 65 age group it is often cancer as a chronic illness and the co-morbidities that prove most concerning.
In a related session addressing the adolescent and young adult (AYA) population Dr Maria McCarthy presented data from Dr Sarah Drew’s ‘Youth Friendly Cancer Care’ project incorporating qualitative interventions, a national survey and consultation with stakeholders. Data from the qualitative study clearly indicates that the AYA’s and their parents commonly experience the location of care as not appropriate, either too juvenile or too old. There are gaps in the discussion between healthcare professionals and their AYA patients, particularly regarding health promotion issues such as alcohol and drug use, and sexual relationships, contraception, and safe sex. AYA patients reported low access to social work and psychology services after cancer treatment, at the times we know they experience the adjustment difficulty.
Several speakers highlighted the challenge AYA patients have with establishing their independence, they are more likely to continue living at home or return to the family home than the general population, with high negative financial impacts from their disease, treatment, and disruption of schooling and study. A/Prof Recklitis indicated that AYA survivors of childhood cancer report post-traumatic stress (PTS) symptoms but most do not meet the diagnostic criteria for PTS disorder, despite this their PTS symptoms are causing them distress and should be addressed.
Moving to the other end of the life span, many older cancer patients experience ageism and are more commonly offered less aggressive (and potentially less effective) treatments. They experience higher levels of depression, often untreated as healthcare professionals assume depression is part of ageing. While older patients may experience cognitive decline impacting their decision-making, age-related adaptive processes can offset this decline and assist them in making decisions congruent with their values and preferences. The key message is, regardless of age, “ask – don’t assume” as individualised care is important.
Dr Chris Steer, from Border Medical Oncology, has found in an audit of clinic notes and review of multi-disciplinary team (MDT) meeting discussions that geriatric assessments are not done and there was little discussion of geriatric issues during MDT meetings. He gave a personal experience of incorporating geriatric assessment into an oncology service. This has successfully been done with existing resources, incorporating efficient screening and referral for supportive care, linking patients to assessment by existing aged care and community services not previously used by oncology services. This approach better addresses the needs of the older patient and allows needs of the caregiver to be concurrently addressed.
So you’ve tested positive for a genetic mutation
A session exploring genetic issues in adulthood also highlighted the existing evidence-based interventions for women with known mutations for breast cancer. A/Prof. Bettina Meiser presented the results of a randomised controlled trial assessing the impact of treatment-focused genetic testing in women newly diagnosed with breast cancer. In this study educational materials were not inferior to standard care consultations in familial cancer centres, suggesting that women should be provided written information to assist them in the decision-making.
Kristi Smith gave a very personal presentation of her experience of testing positive for a breast cancer gene at an AYA stage of life. Kristi’s insightful presentation highlighted how the challenges of living with positive genetic test impact across the lifespan, influencing decisions about work, relationships, child-bearing and prophylactic interventions. Her discussion, while personal, beautifully captured how women can perceive these issues differently across their lives and from each other. A positive gene test result is never simple, the emotional responses can be both happy and sad, empowering and confronting. Kristi really valued direct advice from healthcare professionals and was greatly influenced by an older woman living with a BRCA1 mutation. Her own advice to people testing positive for genetic mutations is that having knowledge and options is a good thing, but not liking any of those options is ok.
The conference committee, organisations and convenor, A/Prof. Penny Schofield are to be congratulated on producing a varied and fascinating day. Living with cancer at any age is challenging, we are getting to better understand those challenges, but there is much to be done to improve the lives and experience of people who find themselves in a cancer centre for treatment.
Dr Haryana Dhillon is Research Fellow, Survivorship Research Group and Deputy Director, CeMPED Central Clinical School at the University of Sydney.
The Second Victorian Psycho-Oncology Research Conference was run by the Victorian Comprehensive Cancer Centre, Paediatric Integrated Cancer Service, Western & Central Melbourne Integrated Cancer Service with support of Psycho-Oncology Cooperative Research Group, University of Sydney; University of Melbourne. Sponsors: ONTrac at Peter Mac, CanTeen.