Ovarian Cancer Australia's Collaborations in Psychosocial Research; Addressing Priorities and Unmet Needs
Ovarian Cancer Australia knows the importance of supporting women in all aspects of their life following a cancer diagnosis including their psychological, social and emotional wellbeing and as such collaborates with major Australian universities and other institutions on a range of research in these areas. To ensure our work in this area is relevant and in line with the needs of those affected in 2019 Ovarian Cancer Australia collaborated with a team at the University of Sydney (Estelle Goarin, Louise Sharpe and Joanne Shaw) on a Delphi study to establish research priorities in the area of ovarian cancer psychosocial research.
The study sought responses from women with an ovarian cancer diagnosis, researchers, clinicians and journal editors and 32 respondents took part. In the first round respondents were asked the following questions; “What are the current psychosocial issues faced by women diagnosed with ovarian cancer?”, “What psychosocial issues cause the most impairment in the lives of women living with ovarian cancer?”, “Are there any psychosocial issues that, in your opinion, are significantly under-researched in ovarian cancer?”, and “What psychosocial issues should be the focus of future ovarian cancer research?
The team then worked in collaboration to group the resulting responses into themes (data from a large scale 2017 survey of unmet needs assisted in ensuring all possible themes and groupings were considered.) 36 themes, covering a range of psychosocial concerns, were established in this round. In Round 2 respondents were asked to rank these 36 themes in order of priority and to nominate their top 5 psychosocial issues, in order of importance. This round established consensus from the group of respondents on 21 issues. In Round 3, respondents were again asked to rank all 21 issues and rate their 5 top priorities.
In the rating section, the top priorities were as follows:
1. Effective Psychosocial Interventions
2. Insomnia
3. Fear of Cancer Recurrence
4. Side effects of treatment
5. Sexual Concerns
6. End of Life Issues
In the ranking section, the top priorities were:
1. Effective Psychosocial Interventions
2. Fear of Cancer Recurrence
3. Side Effects of Treatment
4. Family and Caregiver Concerns
5. Access to Psycho-oncology Treatment
6. Survivorship
As allocated resources for all aspects of cancer research are often limited, results of this Delphi study should guide researchers and organisations to focus future research on top established priorities, such as effective psychosocial interventions and fear of cancer recurrence.
Ovarian Cancer Australia is currently undertaking research collaborations on a range of the topics identified including fear of cancer recurrence, sleep issues and sexual concerns. Please see a full list of psychosocial research collaborations below.
For more information or enquiries regarding OCA's psychosocial research projects please contact Hayley Russell, Support Coordinator at support@ovariancancer.net.au
Current Projects
Title | Authors | Collaborating Institution |
|---|
Scanxiety in People with Ovarian Cancer | Professor Louise Sharpe and Audrey Bennett | University of Sydney |
Experiences and priorities of people with ovarian cancer, their families, friends and carers | Dr Michelle Peate, Dr Jen Marino, Maree Pasvanis, Daniella Salib | University of Melbourne |
Sexuality, Intimacy, and Quality of Life in women with ovarian cancer and their partners | Dr Lesley Stafford, Elizabeth Knoetze, Victoria Wilson | University of Melbourne and The Royal Women’s Hospital |
iConquer Fear: Adaptation of an evidence-based face-to-face treatment for fear of cancer recurrence to an online self-management intervention and evaluation of its usability | Dr Ben Smith and colleagues | Centre for Oncology Education and Research Translation (CONCERT), Ingham Institute for Applied Medical Research |
ConquerFear Advanced: A randomized control trial to reduce fear of cancer recurrence in patients with advanced disease | Professor Louise Sharpe and colleagues | University of Sydney |
Ovarian cancer: investigating Variation in care and survival, Aetiology and Risk factors to Improve outcomes in Australia via National data linkage. The OVARIAN study. | Professor Penny Webb and colleagues | QIMR Berghofer Medical Research Institute |
Pilot Qualitative Study; Conquer Fear from Ovarian Cancer | Associate Professor Haryana Dhillon | University of Sydney |
Fear of Cancer Recurrence Among Carers of Patients with Gynaecological Cancers | Kyra Webb, Dr Joanne Shaw & Professor Louise Sharpe | University of Sydney |
Cognitive bias modification for interpretation (CBM-I) in management of fear of cancer recurrence/progression in women with breast and ovarian cancer | Poorva Pradhan, Louise Sharpe & Wendy Lichtenthal | University of Sydney and Memorial Sloan Kettering Cancer Center |
Losing sleep: The impact of sleep disturbance and fatigue on the quality of life of women with ovarian cancer post-treatment. | Amanda Hutchinson, John Wilson, Tayla Bradley, Isabella Ryan, Crystal Yates and Ilke Onur | University of South Australia |
Pathways for genetic testing for ovarian cancer in Australia Phase 1: Understanding referral pathways and potential variation | Natalie Taylor, Karen Canfell, Anna deFazio, Paul Grogan, Carolyn Nickson, Lara Petelin, Julia Steinberg, Gabriella Tiernan, Amy Vassallo, Louiza Velentzis, Sue Hegarty & April Morrow | University of Sydney |
Completed Projects and Publications
Title | Authors | Collaborating Institution |
|---|
Getting the MOST out of follow-up: a randomized controlled trial comparing 3 monthly nurse led follow-up via telehealth, including monitoring CA125 and patient reported outcomes using the MOST (Measure of Ovarian Symptoms and Treatment concerns) with routine clinic based or telehealth follow-up, after completion of first line chemotherapy in patients with epithelial ovarian cancer. Published in The International Journal of Gynaecological Cancer | Paul Cohen, Penelope Webb, Madeleine King, Andreas Obermair, Val Gebski, Phyllis Butow, Rachael Morton, Wanda Lawson, Patsy Yates, Rachel Campbell, Tarek Meniawy, Michelle McMullen, Andrew Dean, Jeffrey Goh, Orla McNally, Linda Mileshkin, Philip Beale, Rhonda Beach, Jane Hill, Cyril Dixon, Sue Hegarty, Jim Codde, Angela Ives, Yeh Chen Lee, Alison Brand, Anne Mellon, Sanela Bilic, Isobel Black, Stephanie Jeffares, Michael Friedlander | |
Psychosocial Research Priorities in Ovarian Cancer; A Delphi Study | Louise Sharpe, Estelle Goarin | University of Sydney |
Do Symptoms and Their Interpretation affect women’s response to an OC Resource? Published in Frontiers in Psychology | Poorva Pradhan, Louise Sharpe, Hayley Russell, Phyllis Butow & Allan Ben Smith | University of Sydney, University of New South Wales |
The impact of ovarian cancer on individuals and their caregivers: A qualitative analysis. Published in Psycho-Oncology | Jit Hui Tan, Louise Sharpe & Hayley Russell | University of Sydney |
The role of interpretation biases and symptom burden in fear of cancer recurrence/progression among ovarian cancer survivors. Published in Psycho-Oncology | Poorva Pradhan, Louise Sharpe, Phyllis Butow, Hayley Russell | University of Sydney |
The men’s needs study: Exploring the wellbeing of men caring for women with ovarian cancer. Published in Supportive Care in Cancer | Dr Janelle Levesque, Claudia Farnsworth, Rhys Luckey | Monash University |
Sexual functioning after ovarian cancer: are women receiving the information and support they need? Published in Supportive Care in Cancer | Lesley Stafford, Hayley Russell, Elizabeth Knoetze, Victoria Wilson, Ruth Little | The University of Melbourne, Royal Women's Hospital |
Understanding Fear of Cancer Recurrence and Fear of Cancer Progression in Ovarian Cancer. Published in Psycho-Oncology | Professor Louise Sharpe & Daelin Coutts-Bain | University of Sydney |
‘Sometimes I can't look in the mirror’: Recognising the importance of the sociocultural context in patient experiences of sexuality, relationships and body image after ovarian cancer. Published in European Journal of Cancer Care | Sally-Anne Boding, Hayley Russell, Ricki Knoetze, Victoria Wilson, Lesley Stafford | University of South Australia |
Measuring Buffers of Death Anxiety and Fear of Cancer Recurrence in Women with Ovarian Cancer | Matthew Watt, Louise Sharpe, Angela Jones, Hayley Russell | University of Sydney |