Psycho-oncology & Quality of Life
The Psycho-Oncology Research Group investigates the psychological, social and behavioural aspects of cancer, from the time of a cancer diagnosis until end of life. Our psycho-oncology research program is translational in its focus, in that our priority research areas are informed by the challenges faced by those providing and receiving cancer care; we apply the most stringent research methods to develop a strong evidence base to inform best practice; and we engage early with key stakeholders and policy makers to maximise evidence-informed cancer care.
Our research addresses some of the major psychosocial dimensions of cancer, including:
- Understanding the unmet needs and responses of patients, their families and caregivers to cancer at all stages of the disease.
- Determining the influence of the content and process of communication between the health care team and the patient and family on coping, treatment compliance and psychosocial outcomes.
- Identifying the psychological, behavioural and social factors which may influence the disease process, including the impact of cultural, language and socioeconomic differences.
- Developing and testing strategies that can be implemented within health services to minimise the negative impact of cancer.
Congratulations to Dr Sylvie Lambert who received the Hiroomi Kawano New Investigator Award, which is awarded to a new investigator for outstanding research contributions in the field of psycho-oncology.Sylvie received her award at the International Psycho-Oncology Congress in Lisbon in October 2014.
Congratulations to Prof Afaf Girgis and co-authors on the award of Paper of the year: Health Services and Epidemiological, South Western Sydney Clinical School, UNSW Medicine, UNSW, for the following paper: Girgis A, Lambert SD, McElduff P, Bonevski B, Lecathelinais C, Boyes A, Stacey F. Some things change, some things stay the same: A longitudinal analysis of cancer caregivers' unmet supportive care needs. Psycho-Oncology, 2013, 22(7), 1557-1564.
Well done to Dr Janelle Levesque and Prof Afaf Girgis who received the Dart West Breast Cancer Grant at the second annual Ingham Institute Awards night in November 2014. This grant will go towards pilot work to develop intervention materials for Chinese-Australian patients with breast cancer and their caregivers.
Professor Afaf Girgis
Professor Afaf Girgis is Director of the Psycho-oncology Research Group and a leading Australian behavioural scientist in Psycho-Oncology. She received the Clinical Oncology Society of Australia Inaugural Psycho-oncology Award in 2012 and over the past 25 years, she has gained an international reputation for research on development and psychometric testing of measures to assess cancer patients’, caregivers’ and health care professionals’ unmet needs; developing and psychometrically testing measures of psychological wellbeing; conducting complex multi-centre randomised controlled trials of psycho-oncology interventions; undertaking longitudinal studies to understand the longer-term impact of cancer on patients and caregivers; and managing large project budgets. Afaf has served on key state and national committees in behavioural and psychosocial research, professional training, cancer control and public health.
Since 1988, Prof Girgis been awarded more than $38 million in research funding and published more than 300 publications (peer-reviewed papers, abstracts, edited book, book chapters, reports), with many in leading psycho-oncology and public health journals. Her work is highly cited (5900+ citations) and she has had 120+ conference and workshop invitations (Invited Speaker, Plenary Speaker, Session Chair, Organiser), including at the Inaugural Flinders Centre for Innovation in Cancer Survivorship Conference 2013, Joint Meeting of IPOS 14th World Congress and COSA's 39th Annual Scientific Meeting 2012, Multinational Association of Supportive Care in Cancer 2010, International Symposium in Vancouver, BC Cancer Agency 2008 Annual Cancer Conference, and Memorial Sloan Kettering Cancer Centre 2006. She was invited to convene the inaugural Clinical Oncological Society of Australia (COSA) Cancer Survivorship Workshop in 2010.
Dr Janelle Levesque
Dr Janelle Levesque is an Early Career Researcher working as a Project Manager with the Psycho-Oncology Research Group. Since completing her PhD in 2012, Janelle has worked on the Coping-Together and PROMPT-Care projects. Janelle has also completed a Graduate Certificate in Research Management ensuring that she possesses the core skills required to successfully manage research trials from planning to completion.
Janelle’s PhD examined the psychological outcomes of the adult offspring of cancer patients, providing her with comprehensive knowledge of the psychosocial challenges faced by the family members of cancer patients. Her research interests encompass the investigation of the psychosocial impact of cancer on patients, caregivers and the broader family unit, and the development and delivery of interventions to improve the psychosocial outcomes of patients with cancer and their family members in clinical practice. Janelle’s research goals include the development of programs to support caregivers and family members throughout the cancer trajectory from diagnosis to survivorship, to promote the integration of self-management interventions into routine medical care, and to enhance understanding of the needs of culturally diverse patients and their family.
Ms Hayley Candler
Hayley Candler [B.Psych (Hons), M.Couple & Family Therapy] works as a Research Officer for the Psycho-oncology Research Group, and is based at the Calvary Mater Hospital in Newcastle, NSW. She brings to the team experience in both psychological practice and clinical research. Hayley practised as a psychologist over an 8 year period, in both private practice and public health settings, then combined her love of research and helping people to take up a role as a Clinical Research Assistant; responsible for the execution and coordination of randomised clinical trials in a respiratory medicine setting.
More recently, she led the development of two self-directed psychosocial intervention booklets for use in the Coping-Together pilot study with couples facing a recent diagnosis of prostate cancer, and contributed significantly to the project management and data collection processes involved in that trial, including extensive participant recruitment and interviewing. Hayley also provided a substantial amount of content for the psychosocial resources currently under evaluation in the NHMRC-funded Coping-Together RCT.
Hayley has since managed the Newcastle-based, day-to-day activities involved in the PACT: Psychosocial Assessment, Care & Treatment project, which has involved working with patients receiving treatment for head and neck or urological cancers, and the clinicians providing their care, in order to improve the psychosocial support and services they require. When she’s not working, Hayley enjoys riding her bicycle, yoga and singing. For the future, Hayley looks forward to finishing her home renovations and travelling extensively.
Ms Elly Law
Elly Law is a PhD student with the Psycho-Oncology Research Group. She comes from a psycho-oncology background of clinical experience in both nursing and psychology. Elly’s PhD project is exploring the impact of a colorectal cancer (CRC) diagnosis for both patients and caregivers, from a biological, psychological and health utilisation perspective. This project is two-fold, the first involving biomarker analysis (including telomere length) and its relationship with psychosocial predictors of poorer outcomes among CRC patients and their caregivers. The second, a qualitative research sub-study, will explore the impact of the health utilisation environment for colorectal patients and carers – in particular the investigation of support networks within the treatment environment and how patients/carers perceive that support and its importance. Elly’s research goals include continuing to develop research skills in psycho-oncology to enable her to continue research in this area.
Dr Sylvie Lambert (Conjoint)
Dr. Sylvie Lambert is based at McGill University, Montreal, Canada, after moving from Australia where she was a National Health and Medical Research Council (NHMRC) Research Fellow at the Translational Cancer Research Unit, Ingham Institute for Applied Medical Research, University of New South Wales. Her most significant studies have included Australia’s first longitudinal caregiver well-being study, and developing a self-directed coping skills training and self-management interventions for couples facing cancer called Coping-Together. Dr. Lambert now plans to expand the reach of Coping-Together to patients and caregivers with low literacy and from culturally and linguistically diverse backgrounds. Her other areas of interest include the longitudinal assessment of the impact of cancer on patients and their family caregivers, psychometric analysis using Rasch analysis and mixed research methodology (quantitative and qualitative).
Patient Reported Outcome Measures (PROMs) have been used widely for screening for depression, anxiety and symptoms in oncology patients. Computer based applications that collect patients’ responses and communicate them to the treating health professional in real-time have the potential to improve patient wellbeing and cancer outcomes. The project aims to pilot test the implementation of an oncology eHealth platform, PROMPT-Care, which is integrated into the hospital’s Oncology Information System (MOSAIQ) to support cancer patients to achieve and maintain improved health and wellbeing and better cancer outcomes. The system facilitates patient centred care through real-time feedback of PROMs to their clinical team and provision of self-management resources which are responsive to individuals’ PROMs. This is a collaborative project between the South Western Sydney and the Illawarra Shoalhaven Local Health Districts, with funding from the Cancer Institute NSW and the Bupa Health Foundation.
STATUS: Currently recruiting for the pilot study.
Interventions to enhance and develop coping skills to promote patients’ illness adjustment to a cancer diagnosis have been tested, but there are significantly fewer studies that have developed and examined effective support for their partners. This is despite partners reporting as much if not more distress than patients. Coping-Together is an innovative coping skills intervention designed for patients and their partners, incorporating current, evidence-based strategies for illness self-management and coping. This study examines both the efficacy and cost-efficacy of the Coping-Together intervention to empower patients and partners to manage the physical and psychosocial challenges they face after a cancer diagnosis. This NHMRC-funded national collaborative project includes partners from University of New South Wales, University of Newcastle, University of Queensland, Deakin University and University of Louisville.
STATUS: Currently recruiting. Contact Janelle Levesque on email@example.com or call 1800 104 597 for further information.
Courtesy of Ambro at freedigitalphotos.net
3. SKILLS Pilot Study
Breast cancer is the most common cancer in Australian women and confronts patients and carers with a wide range of complex physical, psychosocial, and health care challenges. There is a significant need for culturally appropriate resources to assist CALD patients to manage their psycho-social needs and enhance communication with their health care providers. The overall aim of the project is to undertake a qualitative study to inform the cultural adaptation of an illness self-management resource and patient reported outcomes platform for Chinese women diagnosed with breast cancer and their primary carer. This project is funded by a Dart West Developments Breast Cancer Grant, Ingham Institute for Applied Medical Research.
STATUS: Currently recruiting. Contact Janelle Levesque on firstname.lastname@example.org or call 02 8738 9244 for further information.
4. Colorectal Cancer Cohort Feasibility Study
Colorectal cancer (CRC) is a common cancer in Australia, and affects patients from widely differing genetic backgrounds. Despite aggressive treatments including adjuvant radiation and chemotherapy, approximately 40% of patients with Stage III colon cancer ultimately develop incurable, metastatic disease. There is a need to better identify patients who will do well, in order to spare them the toxicity of treatment as much as possible, and those who will do poorly, in order to find new therapies based on their individual genetic and phenotypic targets. Further, psychosocial morbidity is commonly experienced by both patients and their partner/carer. The biological processes underpinning treatment outcomes, psychological morbidity, and prognosis remain unclear. This pilot aims to:
- Collect data on psychosocial factors experienced by CRC patients and their carers.
- Establish a bank of potential histological, haematological, biochemical, genetic, proteomic and immune-humoral markers that may be associated with outcomes of interest.
- Develop the processes and procedures and determine the required sample size to inform the conduct of a large cohort study which will collect data over the next several years.
STATUS: Currently recruiting. Contact Elly Law at email@example.com
5. An exploration of the social support experience of colorectal cancer patients and their caregivers within a cancer treatment setting
Social support is one way to facilitate adjustment to cancer, playing a vital role in helping to deal with the disadvantages resulting from cancer and its treatment. The physical environment, personal characteristics and network characteristics can all influence the opportunities for, and quality of, social exchange. This is particularly relevant to patients and carers within a cancer treatment setting as they both spend significant amounts of time waiting for treatment. During this time opportunities for informal conversations with other patients/caregivers arise. Little is known about this incidental support and its role in alleviating the distress associated with a cancer diagnosis and subsequent treatment. This study aims to explore the incidence, nature, perceptions and significance of such non-traditional pathways of support for colorectal cancer patients and their caregivers.
STATUS: Recruitment due to start in early 2015. For further information contact Elly Law at firstname.lastname@example.org
6. PACT: Psychosocial Care, Assessment & Treatment Study
Current guidelines recommend integration of psychosocial care (including distress screening and tailored interventions) into routine services. There is limited research evaluating integrated models of care in clinical practice. This study aims to develop, implement and assess the impact, acceptability and cost of an integrated, patient-centred Psychosocial Assessment, Care and Treatment (PACT) model of care for patients with urological and head and neck cancers. The new model of care has been introduced at the John Hunter Hospital (JHH), Newcastle NSW. This Cancer Institute NSW-funded collaborative project includes partners from the University of Newcastle, Hunter New England Local Health District and the Centre for Health Economics Research and Evaluation (CHERE) of the University of Technology Sydney.
STATUS: Recruiting patients and health care professionals of JHH once more in March 2015. Contact Hayley Candler on (02) 4033 5118 or at email@example.com for further information.
Short CE, James EL, Girgis A, D’Souza MD, Plotnikoff RC. Main outcomes of the Move More for Life Trial: A randomised controlled trial examining the effects of tailored and targeted-print materials for promoting physical activity among post-treatment breast cancer survivors. Psycho-Oncology DOI: 10.1002/pon.3639 (accepted 8th July 2014).
Regan TW, Lambert SD, Kelly B, McElduff P, Girgis A, Kayser K, Turner J. Cross-sectional relationships between dyadic coping and anxiety, depression, and relationship satisfaction for patients with prostate cancer and their spouses. Patient Education and Counselling 2014; 96(1):120-127.
Lambert SD, Kelly B, Boyes A, Cameron A, Adams C, Proietto A, Girgis A. Insights into preferences for psycho-oncology services among women with gynaecologic cancer following distress screening. Journal of the National Comprehensive Cancer Network 2014, 12, 899-906
Goldstein D, Bell ML, Butow P, Sze M, Vaccaro L, Dong S, Liauw W, Hui R, Tattersall M, Ng W, Asghari R, Steer C, Vardy J, Parente P, Harris M, Karanth NV, King M, Girgis A, Eisenbruch M, Jefford M. Immigrants' perceptions of the quality of their cancer care - An Australian comparative study, identifying potentially modifiable factors. Annals of Oncology 2014; 25(8):1643-9
Chambers S, Girgis A, Occhipinti S, Hutchison S, Turner J, McDowell M, Mihalopoulos C, Carter R, Dunn J. A randomised trial comparing two low intensity psychological interventions for distressed cancer patients and caregivers. Oncology Nursing Forum 2014; Vol. 41, No. 4: 256-266.
Girgis A, Abernethy A, Currow D. Caring at the end of life: Do cancer caregivers differ from other caregivers? BMJ Supportive & Palliative Care 2014; 0:1–5 (doi:10.1136/bmjspcare-2013-000495). Girgis A, Kelly B, Boyes A, Haas M, Viney R, Descallar J, Candler H, Bellamy D, Proietto A. The PACT Study Protocol: A time series study investigating the impact, acceptability and cost of an integrated model for psychosocial screening, care and treatment of patients with urological and head and neck cancers. BMJ Open 2014; Jan 9;4(1):e004147 (doi: 10.1136/bmjopen-2013-004147).
Wagland K, Levesque JV, Connors J. Disease isolation: The challenges faced by mothers living with multiple myeloma in rural and regional Australia. European Journal of Oncology Nursing 2014; doi:10.1016/j.ejon.2014.10.003
Levesque JV, Maybery DM. Predictors of benefit finding in the adult children of patients with cancer. Journal of Psychosocial Oncology 2014;32: 535-554. doi: 10.1080/07347332.2014.936646
Levesque JV, Maybery DM. The Parental Cancer Questionnaire: Scale structure, reliability and validity. Supportive Care in Cancer 2014; 22: 23-32 doi:10.1007/s00520-013-1935-z
Butow P, Girgis A, Schofield P. Psychosocial aspects of delivering cancer care: An update. Cancer Forum, 2013, 37(1): 20-22.
Lambert SD, Pallant JF, Boyes AW, King MT, Britton B, Girgis A. A Rasch analysis of the Hospital Anxiety and Depression Scale (HADS) among cancer survivors. Psychological Assessment, 2013, 25(2), 379-390. DOI: 10.1037/a0031154.
Mitchell G, Girgis A, Jiwa M, Sibbritt D, Burridge L, Senior H. Providing general practice needs-based care for carers of people with advanced cancer: A randomized controlled trial. British Journal of General Practice, 2013; 63(615):e683-e690(8).
Lambert SD, Girgis A, Turner J, Regan T, Candler H, Britton B, Chambers S, Lawsin C, Kayser K. "You need something like this to give you guidelines on what to do": Patients' and partners' use and perceptions of a self-directed, coping skills training resource. Supportive Care in Cancer, 2013; 21(12), 3451-3460; doi 10.1007/s00520-013-1914-4.
Lambert S, Girgis A, Turner J, McElduff P, Levesque J, Kayser K, Mihalopoulos C, Shih STF, Barker D. A parallel-group, randomised controlled trial of a multi-media, self-directed, coping skills training intervention for patients with cancer and their partners: Design and rationale. BMJ Open, 2013, 3(7), e003337. doi:10.1136/bmjopen-2013-003337
Boyes A, Girgis A, D’Este C, Zucca A, Lecathelinais C, Carey M. Prevalence and predictors of the short-term trajectory of anxiety and depression in the first year after a cancer diagnosis: a population-based longitudinal study. Journal of Clinical Oncology, 2013, 31(21), 2724-2729. doi:10.1200/JCO.2012.44.7540
Girgis A, Lambert SD, McElduff P, Bonevski B, Lecathelinais C, Boyes A, Stacey F. Some things change, some things stay the same: A longitudinal analysis of cancer caregivers' unmet supportive care needs. Psycho-Oncology, 2013, 22(7), 1557-1564.
Lambert SD, Girgis A, Lecathelinais C, Stacey F. Walking a mile in their shoes: anxiety and depression among partners and caregivers of cancer survivors at 6 and 12 months post-diagnosis. Supportive Care in Cancer, 2013, 21(1), 75-85. doi:10.1007/s00520-012-1495-7
Butow PN, Bell M, Aldridge LJ, Sze M, Eisenbruch M, Jefford M, Schofield P, Girgis A, King M, Duggal-Beri P, McGrane J, Goldstein D. Unmet needs in immigrant cancer survivors: a cross-sectional population based study. Supportive Care in Cancer, 2013, 21(9), 2509-2520. doi:10.1007/s00520-013-1819-2
Boyes AW, D'Este CA, Carey ML, Lecathelinais C, Girgis A. How does the Distress Thermometer compare to the Hospital Anxiety and Depression Scale for detecting possible cases of psychological morbidity among cancer survivors? Supportive Care in Cancer, 2013, 21 (1), 119-127. doi:10.1007/s00520-012-1499-3
Butow PN, Aldridge L, Bell ML, Sze M, Eisenbruch M, Jefford M, Schofield P, Girgis A, King M, Duggal-Beri P, Goldstein D, and the Psycho-Oncology Co-operative Research Group (PoCoG) CALD team. Inferior health-related quality of life and psychological well-being in immigrant cancer survivors: A population-based study. European Journal of Cancer, 2013, European Journal of Cancer, 2013, 49, 1948–1956. doi:10.1016/j.ejca.2013.01.011
Girgis A, Lambert S, Johnson C, Waller A, Currow D. Physical, psychosocial, relationship and economic burden of caring for people with cancer: A review. Journal of Oncology Practice, 2013; 9(4):197-202. doi: 10.1200/JOP.2012.000690.
Levesque JV, Maybery D. Parental cancer: Catalyst for positive growth and change? Qualitative Health Research, 2012: 23, 397-408. doi 10.1177/1049732311421617
Levesque, J., & Girgis. Illness self-management in Chinese women with breast cancer and their carers: Cultural adaptation of Coping-Together. Funded by Dart West Developments Breast Cancer Grant, Ingham Institute for Applied Medical Research.
Shaw, T., Sanson-Fisher, R., Dadich, A., Girgis, A., & Braithwaite, J. Development of an implementation science community of practice and education program. Funded by Cancer Institute NSW.
Girgis, A., & Delaney, G. Patient reported experience collaborative project grant – Phase 2. Funded by Cancer Institute NSW.
Hudson, P., Girgis, A., Mitchell, G., Philip, J., Parker, D., Currow, D., Liew, D., & Thomas, T. Family meetings for hospitalized palliative care patients: Benefits and resource implications. Funded by Victorian Cancer Agency.
Barton, M., Lee, S., Girgis, A., Delaney, G., Bokey, L., & Ranson, M. Centre for Oncology Education and Research Translation (CONCERT). Funded by Cancer Institute NSW Translational Cancer Research Centre.
Wakefield, C.E., Cohn, R.J., Girgis, A., McCarthy, M., Grootenhuis, M., Sansom-Daly, U. A multicentre phase II randomised controlled trial of a parent/carer-targeted intervention to improve quality of life in families of young cancer survivors. Funded by Cancer Australia.
Knight, A., Delaney, G., Liaw, S-T., Pennock, R., & Girgis, A. Fostering integration of general practices with cancer services through improved communication pathways. Funded by Cancer Institute NSW Innovation Grant Program – Evidence to Practice Grant.
Girgis, A., Delaney, G., Miller, A., Arnold, A., Carolan, M., Della-Fiorentina, S., Kaadan, N., Avery, S., van Domburg, N., Ng, W., & Spring, K. Patient reported experience collaborative project. Funded by Cancer Institute NSW.
Sanson-Fisher, R., Shaw, T., Girgis, A., &Aranda, S. Developing a priority setting framework for reducing evidence-practice gaps in cancer control. Funded by Cancer Institute NSW.
Shaw, T., Braithwaite, J., Girgis, A., & Sanson-Fisher, R. Implementation Research Education Program. Funded by Cancer Institute NSW.
Meiser, B., Kissane, D., Girgis, A., Butow, P., Goldstein, D., Hale, S., Perry, A., Aranda, S., & Sargeant, C. Communication skills training for oncology health care professionals working with culturally and linguistically diverse patients. Funded by Australian Research Council Linkage Grant.
Girgis, A. Assessing unmet need for psychosocial support of people with cancer in South Australia: Can Cancer Council SA partner with key stakeholders to do more? Funded by Cancer Council South Australia.
Knight, A., Dennis, S., & Girgis, A. Towards seamless cancer care: what do GPs in South West Sydney need to facilitate better integration with cancer services? Funded by Cancer Institute NSW Primary Health Care Grants Program.
Butow, P., Thewes, B., Turner, J., Gilchrist, J., Girgis, A., Sharpe, L., Bell, M., Beith, J., Mihalopoulos, C., Boyle, F., Clarke, S., King, M., Boyes, A., Hill, G., & Armstrong, D. Evaluation of a psychological and educational intervention for fear of cancer recurrence: A cluster randomised controlled trial. Funded by Cancer Australia, beyondblue and National Breast Cancer Foundation.
Girgis, A., & Kelly, B. Feasibility study of an integrated, patient-centred psychosocial care model for patients with urological and head and neck cancers. Funded by Cancer Institute NSW.
Girgis, A., Lambert, S., Turner, J., McElduff, P., Kayser, K., Mihalopoulos, C. Coping-Together: A randomised controlled trial of a self-directed coping skills intervention for patients with cancer and their partners. Funded by NHMRC.