1. C a n c e r S u p p o r t S e r v I c e s Colorectal (bowel) Cancer Research at the Cancer Council Queensland A/Prof Anna Hawkes Manager, Psycho-oncology Research Unit The Cancer Council Queensland Spring Hill, Brisbane AnnaHawkes@cancerqld.org.au

2. C a n c e r S u p p o r t S e r v I c e s Lisas Story When I was diagnosed with bowel cancer I was calm and collected, but looking back, I was in denial. I didnt understand why cancer had picked on me; I was healthy, I thought I ate properly and exercised enough. I felt like my body had somehow failed me. I found I needed to know more, so I began to read about bowel cancer but I had to stop as I found I was only reading the negative stories. I decided that I wanted to experience this for myself….

3. C a n c e r S u p p o r t S e r v I c e s ….. A year after my diagnosis, I found I needed to talk to someone who had gone through the same experiences I had. My family were very supportive, however it was also very difficult for them to deal with my cancer diagnosis. I felt like I needed to talk to someone who understood my experiences…... I still have problems with bowel movements two years after my diagnosis. Early on, I thought I would return to normal, but now I realise there is a different type of normal and that I will have to deal with this for the rest of my life.

4. C a n c e r S u p p o r t S e r v I c e s BACKGROUND CRC most common cancer for men and women combined around 12,500 new cases per year 4,500 deaths per year (80 people a week) – in remote areas 60% of people survive CRC Develops from tiny growths (polyps) in the colon or rectum Symptoms include bleeding from rectum, persistent change in bowel habit, unexplained tiredness and abdominal pain Risk of CRC increases: age (greater if over 50), family history, history of polyps or IBD, poor diet, inactive, overweight Healthy diet and exercise could prevent up to 75% of cases

5. C a n c e r S u p p o r t S e r v I c e s CRC can be treated successfully if detected early Rotary Program: Bowelscan –To raise awareness and provide Faecal Occult Blood Tests (FOBT) to test for blood in the faeces –Developed 1982, over 250 clubs involved annually National Screening Program –Screening recommended every 2 years –Turning 50, 55 or 65 yrs (then 55-74 yrs) –Mailed FOBT kits –GP follow up if necessary Low uptake –34% nationally, 29% QLD –Lower in remote areas

6. C a n c e r S u p p o r t S e r v I c e s Little known about the long-term outcomes, needs and concerns of CRC survivors 57% CRC survivors have ongoing unmet needs –Health professional support and information of greatest need CRC survivors suffer significant physical, lifestyle and psychosocial difficulties –25-40% report ongoing psychosocial problems Majority are not meeting guidelines for lifestyle behaviours –Smoking, nutrition, alcohol and physical activity

7. C a n c e r S u p p o r t S e r v I c e s For CRC survivors, an improvement in lifestyle behaviours may result in: – physical functioning – fatigue – risk of cancer recurrence – risk of second primary cancer – risk of other chronic diseases

8. C a n c e r S u p p o r t S e r v I c e s RESEARCH AIMS 1.To examine in detail how patients fare after a diagnosis of colorectal cancer: CRCQOL - Largest study of its kind 2.To develop and trial a support program to improve well- being for CRC survivors: CanChange - First trial of a comprehensive support program for CRC survivors 3.To investigate geographical differentials in CRC screening in Queensland: CanScreen - 1st Australian-based study to explore CRC screening and knowledge by geographical location

9. C a n c e r S u p p o r t S e r v I c e s 1. CRCQOL 2000 adults diagnosed with CRC between Jan 2003 and Dec 2004 Contacted 4-6 months post-diagnosis then every year for 5 years Health outcomes collected by telephone interview and self administered questionnaire

10. C a n c e r S u p p o r t S e r v I c e s CRCQOL RESULTS Compared with QLD population, 1 year post-diagnosis CRC survivors more likely to be: –Underweight (2.4% vs 1.2%) –Obese (21.3% vs 19.7%) –A former smoker (53% vs 42%) –Risky drinker (22% vs 16%) –Inactive (37% vs 20%) 10-20% of CRC survivors distressed at 1 year

11. C a n c e r S u p p o r t S e r v I c e s 2. CANCHANGE Support program Focus on lifestyle support Patient empowerment and self management Telephone delivered by trained health coaches Includes: –Fortnightly health coaching sessions for 6 months –interactive computer application –participant handbook

12. C a n c e r S u p p o r t S e r v I c e s Currently piloting the program Full trial from 2009 Investigators from: –TCCQ –University of Queensland –QIMR –University of Alberta, Canada –Medical Oncologist –Consumer Representative

13. C a n c e r S u p p o r t S e r v I c e s CANCHANGE PILOT RESULTS 100% program adherence 76% program excellent 100% recommend CanChange to other CRC patients 80% program helped them address current issues 100% health coach excellent, 75% handbook excellent Improvements in diet, physical activity and quality of life.. it was absolutely wonderful, helped me so much and I didn't want it to end….

14. C a n c e r S u p p o r t S e r v I c e s 3. CANSCREEN Queensland population-based survey to identify CRC screening knowledge and behaviour –Randomly recruiting 3000 urban & remote –Postal survey

15. C a n c e r S u p p o r t S e r v I c e s GP survey of attitudes towards CRC symptoms and screening, and knowledge of screening program and guidelines for management –Randomly recruiting 500 remote and metro GPs –Postal survey

16. C a n c e r S u p p o r t S e r v I c e s SIGNIFICANCE CRCQOL will help us to understand health outcomes for CRC survivors CanChange may be translated in to practice through telephone helplines (e.g. Cancer HELPLINE), and will provide much needed support for CRC survivors CanScreen will improve our understanding of CRC screening and the impact of geographical location

17. C a n c e r S u p p o r t S e r v I c e s TAKE HOME MESSAGES CRC can be treated successfully if detected early Diet and exercise important in reducing risk of CRC, as well as CRC recurrence CCQ research will improve understanding and support for people at risk of, and diagnosed with, CRC For more information contact: –AnnaHawkes@cancerqld.org.auAnnaHawkes@cancerqld.org.au –Cancer HELPLINE 13 11 20

18. C a n c e r S u p p o r t S e r v I c e s ACKNOWLEDGEMENTS Sara Gollschewski Susan Bell Brigid Hanley Monica West Jan Howell Dr Renault, Dr Colosimo, Dr Clark Bowel Cancer Support Group Study Participants (Lisa) Cancer Australia