Cancer Survivorship Consortia International Research & Clinical Priorities: Australia

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1 Cancer Survivorship Consortia International Research & Clinical Priorities: Australia Afaf Girgis PhD Centre for Health Research & Psycho-oncology (CHeRP) Cancer Council NSW, University of Newcastle, Hunter Medical Research Institute and Priority Research Centre for Health Behaviour Newcastle, Australia MASCC 2010 (Vancouver)

2 QoL symptoms at 2 years post-diagnosis (QLQ-C30) mean score (out of 100)

3 1. Current state of research 2. Current state of clinical practice 3. Priority research questions for international collaboration

4 Interest in survivorship issues growing rapidly among consumers, researchers and clinical community

5 Current state of research To date, priorities largely driven by: Breast cancer consumers Funding largely from breast cancer organisations

6 2007 National Breast Cancer Foundation-funded Breast Cancer Survivorship Workshop: Research priorities 1. Physical side effects - Fatigue, lymphoedema, cognitive function, joint pain, menopause, general QOL, other issues 2. Psychosocial needs - Interventions, support groups, fear of recurrence 3. Existential and practical issues - Re-establishing an identity, finances, insurance 4. Special needs groups - Young, old women, high risk, CALD, indigenous women 5. Optimal services - Follow-up, well-being clinics, staffing

7 2009 National Survivorship Think Tank : Research priorities 1. Physical issues: exercise & breast cancer survival, fatigue, lymphoedema, cognitive function, weight loss/gain 2. Psychosocial issues: eg measures of distress (pts, carers), interventions re fear of recurrence, uptake of communication skills guidelines and training, impact on relationships, economic/social/cultural impacts, research re vulnerability and resilience 3. Recurrence: data on recurrence, better tests for metastatic disease, interventions to prevent recurrence, approaches for managing fear of recurrence 4. Models of care: including prevention, surveillance and management aspects of follow-up care

8 Current descriptive research, eg: Meaning of survivorship Unmet needs, distress in survivors, caregivers Needs of specific populations eg rural, migrants Fear of recurrence Long-term side effect of cancer treatment, eg cognitive, lymphoedema, infertility Insurance, occupational issues

9 Current intervention research, eg: Lifestyle interventions to improve QoL and survival, eg exercise, diet Pilots of models of follow-up care (BC, CRC) Targeting specific needs eg sexuality intervention for prostate cancer couples Targeting highly distressed survivors and partners/caregivers with accessible interventions (incl economic measures), eg: Tele-based psychological intervention (BBAC) Self-directed coping intervention (Coping-Together)

10 1. Current state of research 2. Current state of clinical practice 3. Priority research questions for international collaboration

11 CANCER IN AUSTRALIA 1/4 of all cancers diagnosed occur in migrants 60% of all new cancer cases in Australia are diagnosed in people living in NSW or Victoria 30% of Australians affected by cancer live in rural or regional areas Growing population of survivors: approx 3% of population (665,000) now living with a history of cancer Population: 21 million Major challenges in delivering cancer care and survivorship care

12 Current state of clinical practice Very patchy - state of play reflects a need to do something, but evidence is not keeping up with demand for action Survivorship Centres in early/development phase: Victoria: Already funded (philanthropic) NSW: In early development stage (LAF?)

13 National Stakeholder Workshop Nov 2010 Clinical Oncological Society of Australia (COSA) Evidence to inform workshop discussions Cancer Survivors Follow-up Care Study

14 Cancer Survivors Follow-up Care Study First comprehensive Australian study of current practices & preferences re s/ship care across a range of cancers: 400 survivors, 2 yrs post-dx (cancer centres) 50 survivors, 3.5 yrs post-dx (CSS) 50 survivors, 5 yrs post-dx (CSS) 100 adult survivors of childhood cancers, 5 yrs post-dx (Children s Hospital)

15 Cancer Survivors Follow-up Care Study Aims Aspects of quality survivorship care rated as important Follow-up care received Areas not adequately addressed by current services (eg needed but didn t get or didn t meet need) Acceptability of models of s/ship care (specialist, GP, nurse, shared, s/ship clinic, phone/survey, internet)

16 1. Current state of research 2. Current state of clinical practice 3. Priority research questions for international collaboration

17 A straw poll of consumers, researchers, clinicians 1. Relevant & meaningful s/ship measures 2. S/ship issues in indigenous, under-studied, minority populations, older survivors 3. S/ship trajectories (longitudinal) survivors, caregivers 4. Follow-up care practices & preferences study 5. Role of family practitioners in f/up care, management of long-term toxicities - patterns of care study 6. Studies of impact of longer-term toxicities & treatment side effects on QoL and s/ship 7. Evaluation of pt-held treatment/care plans 8. Models of f/up care comparison of outcomes between countries

18 Other priority questions: A consumer perspective 1. Assessment of workforce and other investments needed can we afford best practice s/ship care? 2. Role of definitions in service design & planning? Disease-free survivors vs survivors living with disease 3. Care of pt vs survivor who s responsible? Embedding self-management principles 4. What are the issues influencing translation of policy into practice?

19 Finally, a plug for collaborating with us in the land down under! Strong research groups with track record in psychosocial, lifestyle, survivorship & clinical research Good links between psychosocial and clinical community National psycho-oncology cooperative trials group (PoCoG) welcomes international associate members afaf.girgis@newcastle.edu.au

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