Research projects

Understanding the psychosocial sequelae of surviving testicular cancer

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Proudly supported by The Movember Foundation.


Principal researchers

Professor Ian Olver
Professor Phyllis Butow
Dr Tim Luckett
Dr Peter Grimison
Associate Professor Guy Toner
Professor Madeleine King
Mr John Stubbs
Associate Professor Martin Stockier
Dr Elizabeth Hovey
Mr Allan Smith

Institution

University of Sydney

Funding

$190,800 from beyondblue – Total funding $209,880

Co-funded with

Cancer Australia

Award type

Priority-driven Collaborative Cancer Research Scheme (PdCCRS)

Project completion year

2013

Project brief

This research will establish whether depression in testicular cancer survivors is correlated with demographic characteristics and cancer-related factors. Improved understanding of the correlates of depression will lead to better design, focus and timing of interventions, thereby providing data for future studies.

Information from this study will provide important data on the prevalence and correlates of psychosocial wellbeing in survivors of testicular cancer using a multidisciplinary approach. The research explored a comprehensive range of demographic, disease, psychosocial and care factors as predictors of psychosocial outcomes in cross-sectional analytic study.

Aims of the study

The psychosocial impact of testicular cancer will be determined (and so recognised) amongst survivors who have completed treatment, using established tools. Information gathered on the correlates of psychosocial outcomes will begin the process of mapping different pathways to care with patient outcomes. The findings will also be used to inform a future prospective study as the best available means of highlighting likely causal relationships with the power to inform intervention.

The research will evaluate the only available disease-specific measure of quality of life in testicular cancer patients with the aim of equipping the research community with a fully validated tool for future use.

Preliminary findings

Study participants were able to complete the questionnaire on paper or online. A comparison of the data quality from paper and online questionnaires was conducted.

Data analysis is currently ongoing. Preliminary analysis of the qualitative data revealed that difficulties experienced by testicular cancer survivors related to four major themes: loss of confidence in self and others, loss of normal identity, loss of functional capacity, and conflicting expectations. Most testicular cancer survivors felt ill-prepared to deal with a cancer diagnosis so early in their lives, which exacerbated difficulties. Re-establishing a new normal, social comparison and support alleviated difficulties. In-depth analysis currently underway is attempting to identify characteristics and experiences specific to survivors reporting high levels of psychological distress.

The comparison of data quality from online and paper questionnaires showed that online questionnaire completion can be offered in a cancer sample without compromising data quality. In fact, data quality from online questionnaires may be superior due to lower rates of participant non-response. Investigators should be aware of potential sampling bias created by more highly educated participants and managers/professionals choosing to complete online questionnaires. Besides this issue, online questionnaires offer an efficient method for collecting high-quality data, with faster return and fewer reminders.

Pre-testing of the testicular cancer-specific quality of life measure (the QLQ-TC26) was conducted in collaboration with the European Organisation for the Research and Treatment of Cancer (EORTC). The resulting EORTC report showed that the QLQ-TC26 was well received and understood by men with testicular cancer and that most scales showed moderate to good internal consistency. Further analysis of the psychometric properties of the QLQ-TC26 will be conducted.

Outcomes and impacts of research, including potential benefits to cancer control and people affected by cancer

This project will provide estimates of the prevalence of anxiety, depression, psychosocial distress, unmet needs and poor quality of life in Australian testicular cancer patients six months to five years after treatment completion. It will provide the most comprehensive exploration to date of demographic, disease, care, psychological and recovery factors as predictors of psychosocial outcomes in a well-designed cross-sectional analytic study. The qualitative phase of the study will provide in-depth understanding of the quantitative findings about prevalence and risk factors. It is anticipated that data from the study will improve cancer outcomes by informing the better design, focus and timing of multidisciplinary interventions to improve long-term psychosocial outcomes, including the identification of which groups may be at risk and likely to benefit from screening and early psychosocial intervention.

Translation of research findings

The quantitative and qualitative data from the study will provide invaluable guidance for a planned prospective study, which will make it possible to plan appropriate and targeted interventions for men with testicular cancer, with the potential to reduce morbidity for this population. The researchers will also accrue valuable information about the psychometric qualities in an Australian sample of the only available quality of life measure specifically designed for testicular cancer patients, which will equip both clinicians and researchers with a validated tool to assess disease-specific quality of life issues in this group.

It is anticipated that the results of this project and future related research will improve the clinical management of men affected by testicular cancer via the successful identification and follow-up of testicular cancer survivors at high risk of psychosocial distress and impaired quality of life. Effective screening and appropriately targeted and timed interventions will reduce psychosocial morbidity in this population.

References

A Smith, M King, P Butow, I Olver. Comparing the quality of data from postal and online questionnaires. ACSPRI Social Science Methodology Conference 2010. Sydney, Australia, December 2010. (Oral Presentation)

A Smith, M King, P Butow, I Olver, T Luckett, P Grimison, G Toner, J Stubbs, M Stockier, E Hovey. Understanding the psychosocial sequelae of surviving testicular cancer. OZPOS and PoCoG Psycho-oncology Professional Day 2010. Melbourne, Australia, November 2010. (Oral Presentation)

A Smith, M King, P Butow, I Olver, T Luckett, P Grimison, G Toner, J Stubbs, M Stockier, E Hovey. Understanding the psychosocial sequelae of surviving testicular cancer. Clinical Oncological Society of Australia Annual Scientific Meeting 2010. Melbourne, Australia, November 2010. (Poster Presentation)

A Smith, M King, P Butow, I Olver. Understanding the psychosocial sequelae of surviving testicular cancer. Sydney Cancer Conference 2010, Sydney, Australia, July 2010. (Poster Presentation)

Luckett T, King MT, Stockier MR. Quality of life research in prostate and testicular cancer. Cancer Forum. Mar 2010: Vol 34, Issue 1.

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