The GAEA Initiative Background

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The GAEA InitiativeBackground

• Adjuvant endocrine therapy is used to reduce risk
  of breast cancer recurrence
• risk of local or distant recurrence and of
  developing contra lateral breast cancer
  following breast cancer surgery
• risk not well defined
• Little is known about womens experience of, and
  knowledge about
• adjuvant endocrine therapy
• patients understanding of the risk of breast
  cancer recurrence

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The GAEA InitiativeBackground

• Adjuvant endocrine therapy
• usually given after surgery and radiotherapy
• recommended for all women with tumours assessed
  as responsive to hormone treatment
• proven to reduce the risk of recurrence by at
  least one third
• generally given for 5 years - new evidence shows
  value of extending the treatment duration
• two classes of adjuvant endocrine therapy
• anti-oestrogens
• aromatase inhibitors
• clinical evidence comparing both classes shows
  significant benefit of aromatase inhibitors

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The GAEA InitiativeAims

• Determine post-menopausal breast cancer patients
  knowledge about risk of recurrence in early
  breast cancer
• Find out patients understanding of the purpose
  of adjuvant endocrine therapy
• Ascertain patients attitudes towards adjuvant
  endocrine therapy
• Identify the informational and support needs of
  women regarding adjuvant endocrine therapy and
  how these needs can be met
• Gathering Information on Adjuvant Endocrine
  TherApy

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Collaborating Organisations

• Collaboration between
• European School of Oncology (ESO)
• European Oncology Nursing Society (EONS)
• Novartis Oncology
• Europa Donna, the European Breast Cancer
  Coalition, acting as patient advocacy resource

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• The GAEA Initiative
• Survey

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The GAEA Initiative Survey

• A European survey forms part of The GAEA
  Initiative
• Aims are to
• Determine breast cancer patients knowledge about
  and attitudes towards adjuvant endocrine therapy
• Ascertain their informational needs and support
  needs
• Define how to meet these needs

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Survey Objectives

• Determine post-menopausal breast cancer patients
  knowledge about risk of recurrence in early
  breast cancer
• Delineate post-menopausal breast cancer patients
  understanding of the purpose of adjuvant
  endocrine treatment
• Ascertain post-menopausal breast cancer patients
  attitudes towards adjuvant endocrine treatment
• Identify the informational and support needs of
  women about adjuvant endocrine therapy and how
  these needs can be met

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• Survey Methodology

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Survey Methodology
Dec 05
Literature Review
Qualitative Research 32 in-depth interviews
across Europe 1 focus group in Sweden
Developmental stage
Feb 06
Quantitative Research 9 EU countries Qualitative
findings and literature review used to develop
questionnaire Questionnaires completed 547
Mar 06
Survey
Aug 06
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Quantitative Survey Respondents
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Hypotheses Tested in Survey

• Patients not always involved in decision making
  about adjuvant endocrine therapy to the degree
  they would desire
• Women do not explicitly understand the purpose of
  adjuvant endocrine therapy is to reduce risk of
  recurrence
• Womens desire for information about their
  disease and treatment varies considerably
• Patients relationships with their physicians
  vary considerably
• Many women do not use all of the support networks
  available to them
• family members, caregivers and support groups
  play a key role in supporting breast cancer
  patients
• provision of support to breast cancer patients is
  sub-optimal

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Recruitment Methodology

• Women recruited via
• Snowball technique
• respondents passed on survey details to other
  women they know with breast cancer
• GAEA posters and leaflets
• placed in doctors surgeries, pharmacies,
  supermarkets etc
• Through physicians
• Partner networks
• physicians passed survey details onto their
  patients fitting the recruitment criteria
• patient advocacy groups, breast cancer
  conferences, breast cancer nurses etc.

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Recruitment Criteria

• Women recruited based on meeting the following
  screening criteria
• diagnosed with early breast cancer
• first time diagnosed with any type of cancer
• cancer has not spread to any other parts/organs
  of their body
• currently receiving one of the following adjuvant
  endocrine therapies
• anastrozole
• exemestane
• letrozole
• tamoxifen
• have been receiving this therapy for ? one year
• post-menopausal (at least one year prior to
  diagnosis)

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Interview Completion Methodology

• Women chose how they completed the questionnaire
  from the following options
• Self-completion by post 10
• Self-completion by Internet 8
• By telephone (interviewer assisted) 43
• Face-to-face interview / interviewer assisted
  completion 39
• Questionnaires validated and translated into
  local languages
• All research carried out by independent market
  research agency

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Weighting

• Each countrys data weighted according to size
  relative to the incidence of breast cancer across
  the EU
• Results in a more representative sample of the
  actual population of women with breast cancer in
  the EU
• Weighting factors for the current study
  calculated using incidence figures from Globocan
  2002 (WHO)

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Respondent Demographics
lt0.5 Full-time, part-time,
self-employed College graduate post
graduate
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Respondent Demographics
Average number of years since initiation 2.6
years Average time between diagnosis and
initiation 4.2 months
lt0.5
Q When were you first diagnosed with breast
cancer? When did you first start taking this
hormone/endocrine therapy?
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• The GAEA Initiative Survey
• Results

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Top Line Survey Findings

• Only 1 in 3 women surveyed personally involved in
  the decision to start adjuvant endocrine therapy
• Less than a half of women surveyed made aware of
  different treatment options available to them by
  their healthcare professional
• Less than half of women received information on
  how their adjuvant endocrine therapy works
• A third of women surveyed not aware of any
  support services at the time of their diagnosis
• Older women, less well-educated women and those
  with no Internet access least informed and least
  involved in treatment decision making

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• Involvement in Treatment Decisions

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Involvement in Decision-Making and Knowledge of
Endocrine Therapy

• Less than 1 in 4 (22) patients fully or highly
  involved in the decision to start hormone therapy
• 41 said they were not involved in the decision
  at all
• 23 aware of different treatment options, but
  were not involved in the decision to start
  endocrine therapy
• Women who had a high or full level of involvement
  in the treatment decision were significantly more
  aware of side effects and the risk of recurrence
  compared to those who had little or no
  involvement (p 0.05)

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Awareness of different treatment options
Q Did a doctor or nurse make you aware of the
different types of hormone treatments that you
could take?

• Awareness of treatment
• options is higher (plt0.05)
• amongst
• Women aged 60 years or younger (55)
• Women who have completed higher education (54)
• Women who have internet access (57)

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Level of Involvement with Treatment Decisions
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Q Which of the following statements best
describes your level of involvement, if any, in
the decision to start you on hormone treatment
for your breast cancer?
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Level of Involvement with Treatment DecisionsBy
Patient Demographics

Age




Education


Internet access

Q Which of the following statements best
describes your level of involvement, if any,
in the decision to start you on hormone treatment
for your breast cancer?
Differences noted where plt0.05
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Involvement in Treatment Decisions
Q Who was involved in deciding that you should
receive the hormone tx which you are currently
taking? Of the people involved in this decision
who was the main decision maker?
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Involvement in Treatment Decisionswith Level of
Satisfaction
Q Which of the following statements best
describes your level of involvement, if any, in
the decision to start you on hormone treatment
for your breast cancer? How satisfied or
dissatisfied were you with your level of
involvement in the decisions that were made about
your hormone treatment?
Letters in RED text are shown where a cell value
is significantly higher (plt0.05) than the value
in the column represented by the letter
No response n5
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Doctor-Patient Relationship
Mean 4.3 4.2 3.6 3.6 3.3
Q Thinking about the doctor who has been / is
most involved in your hormone treatment, to what
extent do you agree or disagree with each of the
following statements?
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• Attitudes Towards Adjuvant Endocrine Therapy

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Patients are positive about taking adjuvant
endocrine therapy
Mean 3.7 3.7 3.5 3.5 3.4 3.2
Weighted Base All BC patients (n547) Source Q15
(To what extent do you agree or disagree with
the following statements)
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• Provision of Information on Adjuvant Endocrine
  Therapy

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Information Given at Initiation of Adjuvant
Endocrine Therapy

• Less than half the women (44) received
  information about how their treatment works
• Almost half the women (47) claimed they were not
  made aware of alternative treatment options at
  the initiation of their current treatment
• Only 25 were informed of the possible severity
  of side-effects
• Only 20 were informed of the duration of
  side-effects
• Only 22 were informed of the risk of their
  cancer recurring at the end of their adjuvant
  endocrine therapy
• Younger women, better educated women and women
  with access to Internet received more information
  than older, less well educated women

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Information Given at Initiation
Characteristic differences plt0.05
gt Internet access (63), 60 or younger (63)
gt Internet access (49), 51-60 (53)
gt internet access (31)
gt 50 or younger (34)
gt internet access (27), 51-60 (27)
gt Internet access (19), 51-60 (19)
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Awareness of Different Treatment Options
Q Did a doctor or nurse make you aware of the
different types of hormone treatments that you
could take?

• Awareness of treatment
• options is higher (plt0.05)
• amongst
• Women aged 60 years or younger (55)
• Women who have completed higher education (54)
• Women who have internet access (57)

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Awareness of Side Effects and Risk of
Recurrenceby Involvement in Treatment Decision
Risk of cancer returning when on AET
Risk of cancer returning when stopped taking AET
AB
ABC
AB
ABC
A
A
A
A
B
C
D
E
A
B
C
D
E
A
Long term consequences of taking AET
Different side effects thatmay be experienced
How long side effects might be experienced for
AB
A
A
A
ABD
AB
AB
AB
A
A
A
B
C
D
E
A
B
C
D
E
A
B
C
D
E
A
Letters in RED text are shown where a value is
significantly higher (plt0.05) than the value in
the column (letters in BLACK text) represented by
the letter
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Risk of Recurrence

• Widespread confusion about risk of recurrence of
  breast cancer
• confusion greater in older and less well educated
  women
• Nearly 1 in 3 women (29) did not know how their
  risk of recurrence compared to other women
• However, womens perceived risk does not
  influence their likelihood to frequently examine
  themselves

Q Based on what you understand about your breast
cancer, which of the following statements best
describes what you feel your risk is of the
cancer returning, compared with other women who
have had breast cancer?
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Patients perception of risk can influence their
belief about whether they are cured
I believe I am cured
Weighted Base All BC patients (n547) Source Q15
b/g /Q14 (To what extent do you agree or
disagree with the following statements) (Based
on what you understand about your breast cancer,
which of the following statements best describes
what you feel your risk is of the cancer
returning, compared with other women who have had
breast cancer?)
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• Information and Support

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Information and Support Needs

• Doctors considered most useful source of
  information
• A third of women (34) said they were not aware
  of any support services
• Less than half (44) of women made aware of
  breast cancer support groups
• among those women aware of support services, a
  third (32 ) found these services either
  extremely or somewhat useful
• Older women, less-well educated women and those
  without Internet access used fewer sources of
  information

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Health professionals, family and friends are the
main source of support for patients
Women who have used this source are (plt0.05)
gt Internet access, lt71
lt 71
gt Lower ed.
lt 61-70
gt younger, gt higher ed., gt internet access
Weighted Base All BC patients (n547) Source
Q18 (Listed below are a number of sources of
support which you may or may not have used. For
each of the sources of support listed, please
indicate whether you found it to be A) of very
little use, B) somewhat useful, C) extremely
useful, D) never used this source)
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Information Sources Considered to be Extremely
Useful




Q Listed below are a number of sources of
information which you may or may not have used to
understand more about hormone treatment for
breast cancer. For each of the sources of
information listed, please indicate whether you
found it to be A) of very little use, B)
somewhat useful, C) extremely useful, D) never
used this source
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Sources of Support Patients MadeAware of When
First Diagnosed
Q Which, if any, of the following sources of
support were you made aware of when you were
first diagnosed with breast cancer?
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What Women Want from Healthcare Professionals
Explain things in simple terms
Provide easy access to the breast cancer team at
all times
Provide follow-up care and information for when I
leave hospital
Take time to explain the disease and treatment
Explain how to alleviate hot flushes
Be sympathetic and offer comfort
Encourage me to have faith in my treatment
Make sure I understand the importance of taking
medication every day
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• Conclusions

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Conclusions

• Patients are
• not sufficiently involved in treatment decision
  making
• not sufficiently aware of different treatment
  options
• The provision of information at the initiation of
  adjuvant endocrine therapy is sub-optimal
• patients who were actively involved in the
  treatment decision received the most
  comprehensive information
• Older patients, those who are less well educated
  and those without Internet access were less
  involved in decision making and received less
  information

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Call to Action

• All patients, regardless of age or educational
  level, should understand
• how adjuvant endocrine therapy works
• different treatments available
• possible side effects
• risk of recurrence
• This understanding is necessary to allow patients
  to make informed decisions about their treatment
  
• Better communication between patients and
  healthcare professionals required
• Special efforts required to address significant
  needs of older women, less well educated women
  and those with no Internet access

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Next Steps

• GAEA findings provide initial insight into
  womens information needs
• Further research required to develop greater
  understanding of womens needs
• Development of strategies and educational tools
  to help meet knowledge gaps

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The GAEA Initiative 2007

• Publications of survey findings
• Presentation of findings at international
  meetings (medical, nursing, patient advocacy)
• Research grants
• Healthcare professionals / patient educational
  initiatives