Making hard choices easier:

1
Making hard choices easier

• A fertility-related decision aid

Sue Rovelli1, Michelle Peate2,3, Bettina
Meiser2,3, Martha Hickey4 Michael Friedlander2,3.

• RHWNPOW
• Dept of Med Onc, Prince of Wales Hospital
• Prince of Wales Clinical School, University of
  NSW
• School of Womens and Infants Health, University
  of WA

This study has been funded by the Cancer Council
NSW.
2
Breast cancer in Australia

• 13,000 women are diagnosed with breast cancer
  each year

• 6-7 of these women ? 40

• Many women have not started or completed their
  families

• Cancer treatments commonly impact on fertility

• Chemotherapy ? permanent or temporary amenorrhea
• Endocrine (hormonal) therapy ? time spent on
  treatment

• Fertility preservation important

3
Impact of age on menopause after breast cancer
Graph adapted from Goodwin P, Ennis M, Pritchard
K, Trudeau M, Hood N. Risk of menopause during
the first year after breast cancer diagnosis. J
Clin Oncol 199917(8)2365-2370.
4
Fertility options
Interventions possible

• Small window of opportunity
• Rely on the oncologist to initiate discussion

• varying success rates,
• delays in cancer treatment,
• availability,
• cost,
• partner status,
• impact on the cancer.

5
Women need

• High-quality, fertility-related information.
• (Young Breast Cancer Action Group)

• effects of cancer treatments on fertility,
• effects of fertility treatment on cancer,
• pregnancy after cancer

• Discussed at the earliest possible opportunity
• (Lee et al JCO (2006) 24 2917)

• Preferred methods specialist decision aid
• (Thewes et al, JCO (2005) 23 5155)

6
What is a Decision Aid (DA)

• User friendly, structured information

• Weigh up the pros and cons of choices

• Not to persuade, but can provide decision
  support by helping the patient to
• Comprehend relevant clinical information
• Clarify and communicate own attitudes towards
  decision
• Arrive at a decision consistent with their
  personal values

• Decision aids improve Knowledge
• 
  Quality of decision making

• Choices more likely to be based on Clearer
  values
• More
  realistic expectations

7
Need for a DA

• Difficult decisions where information is complex
  with uncertain outcomes

Need for better fertility-related educational
materials

DECISION AID Currently no decision aids specific
to fertility-related issues
8
Aims hypotheses

• The development of a fertility-related decision
  aid
• Evaluation of the decision aid compared to usual
  care

9
Development of the DA
10
Content of DA
Topics covered include

• Background information about breast cancer and
  female fertility
• Assisted Reproductive Technology options
• Values Clarification Exercises

11
Pilot Testing Results

• How thoroughly was it read?
• 94 very or quite
• 6 not very
• How long did it take?
• 63 15-30 min
• 25 31-40 min 12 longer than 41 minutes

• All participants
• Were very satisfied or satisfied
• Found it to be informative, useful clearly
  presented
• Felt that the information was balanced
• Improved their understanding to some extent

12
Pilot Testing Results

• 94 of participants found it
• Easy to read
• Relevant
• Met or exceeded expectations

• 88 of participants felt that the
• Amount of information was about right
• DA provided a clear explanation of issues

• 81 of participants
• Reported the DA as being appealing to look at

• Would they recommend it?
• 87.5 yes

13
Evaluation of DA
DA adapted
14
Study overview

• 22 clinics around Australia

• 120 women recruited by Breast Care Nurses
• 60 control
• 60 intervention

• Eligibility 40 years, not yet commenced
  adjuvant treatment, not yet completed their
  families

• Block assignment

• 3 questionnaires baseline, 1 month 12 months
• Measuring decision related outcomes

15
Evaluation of DA USUAL CARE
16
Demographics

• 67 women (59 completed first follow-up, 27 final
  questionnaires completed)
• 21 40 years (mean 33.9 years)
• Relationship status
• Not in a relationship 22
• In a committed relationship 78
• Education
• High school 21
• Diploma/Certificate 27
• Bachelor degree or higher 42

17
Demographics

• Employment
• Full-time 57
• Part-time 21
• Home duties 10
• Other 12
• Parity
• 61 currently without children
• 80 wanting children in the future (85 in next 5
  yrs)
• 15 undecided
• 39 with (biological) children
• 48 want more children,
• 52 unsure

18
The Current Experience

• It is stressful enough without having to
  co-ordinate decisions to have treatments on
  contradicting advice I find that there is not
  enough information as to how the treatment will
  effect my fertility and therefore solutions
  around this 33yrs

I dont really know much about fertility
treatment options. Its all quite scary and at my
age this situation is starting to make me feel
pressure (sic) 35yrs
Having children was never on my list of things I
wanted to achieve BUT now that option may be
taken away from me I think about children
(having) more... 37yrs
I dont think enough emphasis is given to
fertility options for younger women. Differing
information between oncologists is very scary...
39yrs
19
Information needs Impact of cancer treatment on
fertility
20
Information needs Available fertility options
21
Discussion of fertility issues

• 92 discussed with a health professional (55
  health professional initiated)
• Medical Oncologist 80
• Surgeon 51
• Fertility Specialist/
• Gynecologist 51
• Breast Care Nurse 44
• General Practitioner 10
• Psychologist/ Social Worker 7

• 54 have been referred to a fertility specialist

22
Fertility information provision

• Impact of cancer treatment and fertility
• Very satisfied 14
• Satisfied 53

• Fertility treatment options
• Very satisfied 8
• Satisfied 49

More detail on (fertility) options and
contacts ...relevant to your specific age
group. ...a separate booklet... ...more
comprehensive info...
23
What does this mean?

• Need for decision support
• About fertility-issues
• Specific to younger women with breast cancer

Where to from here?
Evaluate the decision aid!!!
24
Acknowledgements

• Thanks to the following clinics and their staff
  for their involvement and assistance NSW Prince
  of Wales Hospital, Royal Womens Hospital, Mater
  Medical Centre, Royal North Shore Hospital,
  Strathfield Breast Centre, Liverpool Hospital,
  Campbelltown Hospital, Wollongong Hospital, St
  George Hospital, Westmead Hospital, Royal Prince
  Alfred Hospital, Shoalhaven Hospital, Concord
  Hospital, St Vincents Hospital. VIC St
  Vincents Hospital, Peter MacCallum Cancer
  Institute, Goulburn Valley Base Hospital SA
  Royal Adelaide Hospital. WA Sir Charles Gardner
  Hospital, Mount Medical Centre, Royal Perth
  Hospital. QLD Royal Brisbane Women's
  Hospital. ACT Calvary Hospital
• Thanks also to the following people for their
  assistance R Martinello, J Fallon-Ferguson, K
  Parkinson, C Wakefield, K Luxford, E Villanueva,
  C Lewis, S Rovelli, F Boyle, SA McLachlan, KA
  Phillips, R Stuart-Harris, J Irle and U
  Sansom-Daly.
• Special thanks to the women participating in this
  study.
• Contact details Michelle Peate
• 
  m.peate_at_unsw.edu.au