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

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

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

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

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

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

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 Issues covered by nurse counsellors

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. Assessment

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

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

Worry about dying * *p=0.001

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

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.

Satisfaction with the Service "I just thought the referral process was a matter of course, thought it was a good idea“ "Instead of asking stupid questions, now ask sensible questions - broadened my knowledge of disease" "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!"

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