Referral%20for%20information%20

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
(N1020)PRESENTING FOR CANCER DIAGNOSIS
Block randomisation
Consultation with specialist (diagnosis)
PASSIVEREFERRAL
ACTIVE REFERRAL 1 4 CISS outcalls
ACTIVE REFERRAL 2 1 CISS outcall
Recruitment
Recruitment
Recruitment
Baseline questionnaire
Call 1 lt1 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
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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.

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Total referrals 110
Ineligible 3
Total eligible 107
Refused at baseline n13 (12)
Withdrew at 4 month follow-up n14 (13)
Participants 79 (74)
1 patient was deceased at the 4 month
follow-up
10
Worry about cancer


p0.001 p0.003
11
Worry about dying

p0.001
12
Worry about physical problems associated with
surgery/treatment

p0.001
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

• "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!"
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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.