Referral for information & support as part of routine cancer management

1. Referral for information & support as part of routine cancer management D Hill, P Livingston, V White, D Akkerman

2. Background Paradoxes: • Clinicians viewed as most credible source of medical information. • Time for answering questions limited. • Information is the greatest reported unmet need of cancer patients. • High satisfaction among Cancer Information Support Service (CISS) users. • Patients must initiate contact with CISS. • Lack of awareness • Lack of provider referral

3. Cancer Information Support Service • Staffed by trained oncology nurses. • Information on range of issues: • cancer treatment • coping strategies with cancer diagnosis • referral to local health, welfare & support services

4. Challenge • Find a way of connecting cancer patients to a support service at appropriate times: • cost-effective • all patients at earliest opportunity • access during stressful periods • Focus on males: • underutilise health services, and • less research to improve health outcomes in men with cancer

5. Aim • To assess whether a specialist referral and outcall program reduces psychological morbidity associated with a cancer diagnosis.

6. PROSTATE & MALE COLORECTAL PATIENTS(N=1020)PRESENTING FOR CANCER DIAGNOSIS Block randomisation Consultation with specialist (diagnosis) ACTIVE REFERRAL 2: 1 CISS outcall PASSIVEREFERRAL ACTIVE REFERRAL 1: 4 CISS outcalls Recruitment Recruitment Recruitment Baseline questionnaire Call 1: <1 week after diagnosis Possible patient-initiatedcalls to CISS: 1300 66 22 80 Call 2: 6 wks post-diagnosis Call 3: 3 mths post-diagnosis 4-month telephone questionnaire Call 4: 6 mths post-diagnosis 7-month telephone questionnaire 12-month telephone questionnaire

7. Issues covered by nurse counsellors • The cancer dx • Treatment management issues • What to expect from surgery • Communication with specialist • Partner / family issues • Psychological / emotional issues • Understanding the language of cancer • Diet and nutrition • Other support services

8. Assessment • Patients interviewed at 4, 7 & 12 months post-diagnosis. • Psychological distress. • Fear of recurrence, pain & suffering. • Social support; quality of life. • Patient satisfaction with referral process & outcall program. • Specialists’ satisfaction with referral process.

9. Total referrals110 Ineligible3 Total eligible107 Refused at baselinen=13 (12%) Withdrew at 4 monthfollow-upn=14* (13%) Participants79 (74%) *1 patient was deceased at the 4 month follow-up

10. Worry about cancer ** * *p=0.001; ** p=0.003

11. Worry about dying * *p=0.001

12. Worry about physical problems associated with surgery/treatment * *p=0.001

13. Satisfaction with the Service • 88% reported calls from CISS acceptable. • 83% found the calls helpful. • 86% of the Active Referrals said the timing of the calls was helpful.

14. Satisfaction with the Service "Instead of asking stupid questions, now ask sensible questions - broadened my knowledge of disease" "I just thought the referral process was a matter of course, thought it was a good idea“ "I think probably that prostate cancer is not greatly talked about by men - so the more discussions take place, the easier it becomes to talk not only to your doctor, but to other men as well!"

15. Conclusions Preliminary results indicate that the: • intervention has the potential to reduce psychological morbidity associated with a cancer diagnosis; • service acceptable to patients; and • if effective, referral for information and support could be included in the management of all patients from diagnosis.