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Little is known about women’s experience of, and knowledge about adjuvant

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2 : The GAEA Initiative Background 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 women’s experience of, and knowledge about adjuvant endocrine therapy patients’ understanding of the risk of breast cancer recurrence
3 : The GAEA Initiative Background 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
4 : The GAEA Initiative Aims 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
5 : 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
6 : The GAEA Initiative Survey
7 : 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
8 : 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
9 : Survey Methodology
10 : Survey Methodology Qualitative Research 32 in-depth interviews across Europe & 1 focus group in Sweden Developmental stage Literature Review Survey Quantitative Research: 9 EU countries Qualitative findings and literature review used to develop questionnaire Questionnaires completed: 547 Dec 05 Feb 06 Mar 06 Aug 06
11 : Quantitative Survey Respondents
12 : 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 Women’s 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
13 : 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.
14 : 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)
15 : 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
16 : Weighting Each country’s 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)
17 : Respondent Demographics * <0.5% ** Full-time, part-time, self-employed *** College + graduate + post graduate
18 : Respondent Demographics Q: When were you first diagnosed with breast cancer? When did you first start taking this hormone/endocrine therapy? * <0.5% Average number of years since initiation: 2.6 years Average time between diagnosis and initiation 4.2 months
19 : The GAEA Initiative Survey Results
20 : 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
21 : Involvement in Treatment Decisions
22 : 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)
23 : Awareness of different treatment options Awareness of treatment options is higher (p<0.05) amongst: Women aged 60 years or younger (55%) Women who have completed higher education (54%) Women who have internet access (57%) Q: Did a doctor or nurse make you aware of the different types of hormone treatments that you could take?
24 : Level of Involvement with Treatment Decisions 22% 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?
25 : Level of Involvement with Treatment Decisions By Patient Demographics Age Education Internet access * * * * * * * * *Differences noted where p<0.05 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?
26 : 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?
27 : Involvement in Treatment Decisions with Level of Satisfaction No response n=5 Letters in RED text are shown where a cell value is significantly higher (p<0.05) than the value in the column represented by the letter 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?
28 : 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?
29 : Attitudes Towards Adjuvant Endocrine Therapy
30 : Weighted Base: All BC patients (n=547) Source: Q15 (To what extent do you agree or disagree with the following statements) Patients are positive about taking adjuvant endocrine therapy Mean 3.7 3.7 3.5 3.5 3.4 3.2
31 : Provision of Information on Adjuvant Endocrine Therapy
32 : 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
33 : Information Given at Initiation > Internet access (63%), 60 or younger (63%) > Internet access (49%), 51-60 (53%) > 50 or younger (34%) > internet access (31%) > internet access (27%), 51-60 (27%) > Internet access (19%), 51-60 (19%) Characteristic differences p<0.05
34 : Awareness of Different Treatment Options Awareness of treatment options is higher (p<0.05) amongst: Women aged 60 years or younger (55%) Women who have completed higher education (54%) Women who have internet access (57%) Q: Did a doctor or nurse make you aware of the different types of hormone treatments that you could take?
35 : Awareness of Side Effects and Risk of Recurrence by Involvement in Treatment Decision Risk of cancer returning when on AET Risk of cancer returning when stopped taking AET Different side effects that may be experienced Long term consequences of taking AET How long side effects might be experienced for A A AB AB A A ABC ABC A AB AB A A AB A A AB A ABD Letters in RED text are shown where a value is significantly higher (p<0.05) than the value in the column (letters in BLACK text) represented by the letter B C D E A B C D E A B C D E A B C D E A B C D E A
36 : 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, women’s 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?
37 : Weighted Base: All BC patients (n=547) 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?) Patients’ perception of risk can influence their belief about whether they are cured I believe I am cured
38 : Information and Support
39 : 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
40 : Health professionals, family and friends are the main source of support for patients Weighted Base: All BC patients (n=547) 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) > Lower ed. Women who have used this source are (p<0.05): < 71+ < 61-70 > Internet access, <71+ > younger, > higher ed., > internet access
41 : 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
42 : Sources of Support Patients Made Aware 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?
43 : 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 Be sympathetic and offer comfort Explain how to alleviate hot flushes Encourage me to have faith in my treatment Make sure I understand the importance of taking medication every day
44 : Conclusions
45 : 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
46 : 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
47 : Next Steps GAEA findings provide initial insight into women’s information needs Further research required to develop greater understanding of women’s needs Development of strategies and educational tools to help meet knowledge gaps
48 : 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
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