Background: Metastatic breast cancer (MBC) is the fifth most common cause of death from cancer globally.1 MBC is incurable and its trajectory complicated. Patients have only a few days to choose treatments after an unexpected diagnosis, and most conversations with health care professionals (HCPs) are oral, a communication method with low retention accuracy (14%).2 Patients and caregivers feel ill prepared and overwhelmed. Yet when visuals are introduced into HCP/patient communication, accurate recall can be as high as 85% for low-literacy populations.2 Aim: Test if visually based communication tools can be used by HCPs to increase MBC patient and caregiver understanding of MBC as incurable, and confidence in making treatment decisions for quality of life. Methods: Survey of MBC patients (n=487) communication experience prior to treatment of Stage IV; interviews with HCPs (n=20) in the clinic to identify communication barriers with patients; empathy role play with HCPs and patients to clarify viewpoints (n=7); analysis of patient materials; in-depth interviews with MBC patients and communication experts (n=12); iterative design process of communication tool prototype with MBC patient group (n=48) and HCPs. Results: Only 1 in 8 patients were educated with visuals during initial discussions with HCPs. Less than half of patients (46%) included HER2 and hormone receptor status when asked to describe their subtype. One-third of patients felt they did not have enough knowledge to participate in decision-making for treatment and 58% of patients felt rushed to start; 71% did not recall discussing goals/hobbies; and just 62% discussed pain and symptom management. HCPs want to deliver difficult news in a clear and empathetic way, reduce repetition, save time educating patients, and have better tools for caregivers; current patient materials are impersonal and overwhelming. Iterative development and testing of the MBC Communication Toolkit prototype with HCPs and patients showed patients understood treatment options more easily with a visual metaphor while HCPs using the prototype said the images were effective for communicating symptoms and treatment options. Conclusion: A visual approach to improving communication between MBC patients and caregivers and their HCPs seems possible based on positive results of patient interpretation and practitioner feedback. Visual tools can help HCPs engage patients with information to enable them to understand their disease, goals, and nature of treatments so they can make informed, appropriate decisions. REFERENCES 1. International Agency for Research on Cancer: Breast cancer: estimated incidence, mortality and prevalence worldwide in 2012. Available at https://globocan.iarc.fr/Pages/fact-sheets_cancer.aspx 2. Houts PS, Witmer JT, Egeth HE, et al: Using pictographs to enhance recall of spoken medical instructions II. Patient Educ Couns 43:231-242, 2001 https://doi.org/10.1016/S0738-3991(00)00171-3
Background: Breast cancer (BC) is the most common cancer in Malaysia but has the worst survival in the Asia Pacific region. Main drivers identified in previous research include late-stage disease at presentation, poor adherence to treatment and sociocultural barriers. Factors affecting late presentations include lack of awareness on basic symptoms of BC and poor access to early detection. Although BC awareness campaigns have been done, Hadi et al., showed low BC awareness among university students in Malaysia. This is an evaluation of the “Show You Care, Be Aware” campaign that was done in University of Malaya, Kuala Lumpur in October 2017. The campaign was carried out using KYL materials through use of posters, awareness booths and public forums. The materials contain information on the normal breast, 12 symptoms of BC, information on breast self examination (BSE), screening and diagnostic (detection) pathways in Malay and English language. Aim: To evaluate the campaign effect on breast health literacy. Methods: A quasi-experimental research was conducted. The KYL materials were forward and backward translated by 2 native bilingual individuals. The context and content of the translation was ensured to be accurate and fitted into the KYL design. A total of 679 participants participated in the study. A self-designed questionnaire was used to assess effectiveness of the materials. Educational intervention sessions were provided in the form of KYL materials (leaflets, posters and banners) displayed in awareness booths in the campus. Discussion on leaflets and questions and answers, and practical demonstrations of BSE dummy were done. The questionnaire was administered through face to face interview. The data were analyzed via SPSS 20; descriptive and Wilcoxon matched paired signed rank test was performed. Results: 72% (n=492) of our participants were Malay, 19% (n=119) Chinese and 10% (n=68) Indians and others. Majority of our participants were female (94.2%), age 30 or below (61%), single (62.9%), had college or university education (85.7%). Most of our participants, 96.2% stated that the language used in the KYL materials were clear and understandable; 95.3% thought materials were attractive and 89.2% found them acceptable in Malaysian culture. 52.7% preferred Malay materials, 40.4% English and 6.5% in both Malay and English. The materials improved perceived knowledge on the process of detecting BC (96.5%). 92.8% agreed or strongly agreed that they felt more confident in recognizing the symptoms of BC themselves. There was an increase in self reported knowledge of BC; mean scores before and after exposure to KYL materials were 2.83 versus 4.30 respectively ( P < 0.001). Conclusion: Health education using KYL materials promoted breast cancer awareness, confidence in detecting symptoms and knowing processes of diagnosis among urban and educated Malaysians. Future research in lower educated and rural communities in Malaysia is warranted.
This abstract was not presented at the conference. Citation Format: Mohd Taib NA, Islam T, Su TT, Musthaffa S, Abdullah Din N, Rahman Z, Mohamed KNB, Kaur S, Filza J, Shaheera F, Ellsworth Beaumont C. Not presented [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P6-14-04.
This abstract was withdrawn by the authors. Citation Format: Ellsworth Beaumont C, Nwankwo E. Withdrawn [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P1-02-08.
Background: Nigeria, annually, has the highest numbers of death from breast cancer (BC) in Africa, estimated at 10,000. While BC incidence is declining in many parts of the world, it is increasing in Nigeria. Delay in BC diagnosis in Nigeria is due to: i) health care professionals (HCPs) and patients having poor knowledge of BC causation and symptoms; ii) incorrect diagnosis of symptoms; iii) delay in treatment seeking; iv) use of ineffective/harmful treatment methods.1 Low literacy rates, fear of cancer and the cultural taboos associated with BC create communication hurdles difficult to overcome.2 Aim: Increased HCP and patient of knowledge of BC causes, symptoms and detection, and improved communication between HCP and patients, resulting in increased and improved diagnostic protocol adherence, more patients self-reporting symptoms, and ultimately down-staging of patients. Methods: i) Aggregation of historical data of participating clinics of patients BC stage at diagnosis; ii) survey of HCP knowledge of BC symptoms and diagnostic protocols before and after seeing Worldwide Breast Cancer´s (WBC) Know Your Lemons (KYL) education materials; iii) frequency of display of KYL posters in clinics; iv) HCP survey of frequency of BC health discussions during a clinic visit; v) pre- and postsurvey of patient knowledge, interest and willingness to report symptoms at community education sessions, vi) count of number of patients reporting symptoms while making/attending clinic appointments. Results: Increase in HCP knowledge of symptoms and diagnostic protocols before and after seeing the KYL education materials; more visible use of patient friendly BC education materials displayed in the clinic; increase in frequency of breast health discussions initiated by HCPs with their patients; improved patient interest and knowledge of symptoms and diagnostic protocols; increase in patient confidence in being able to recognize a BC symptom; increase in patients making clinic appointments and self-referring symptoms to HCPs. Conclusion: As proven in other parts of the world with the KYL education materials, the researchers aim to prove, in undertaking this study in Lagos, Nigeria, that training HCPs (e.g., patient navigators, community workers, primary care physicians, mammography technicians) and patients in the signs/symptoms and risk factors for breast cancer using WBC´s bright, appealing and eye catching KYL materials can improve how HCPs and patients communicate about BC symptoms and detection option, which leads to earlier stage of diagnosis. 1. Agba et al, 2012; American Cancer Society, 2011; Cancer Today, 2012; Ogundipe, 2011; Osain, 2011; Prevalence of Breast Cancer, 2015. 2. Okpara and Kabongo, 2011; Total Facts Nigeria, 2017; World Atlas, 2017.
Worldwidebreastcancer.com is an online resource designed to increase understanding of the basics of breast cancer detection through good design. Tools are used in 8 countries by 500+ advocacy groups reaching 1MM+ people in English, Spanish, Turkish, Arabic, Japanese, Gujarati and Samoan. The Metastatic Breast Cancer Alliance (MBCA) is an advocate-led coalition aiming to transform and improve the lives of people living with metastatic breast cancer (MBC). Different from early breast cancer, MBC is not curable and is the cause of virtually all breast cancer deaths; ∼40,000 die annually of MBC. People with MBC are always in treatment, switching drug regiments as their disease progresses. Survival and quality of life depends on patients' treatment decisions; yet many do not have a high level of engagement during in-office conversations with their oncologists. Objective: Develop a visual tool kit to help MBC patients, with little or no engagement in a treatment decision-making process, communicate on equal ground with their health care professionals (HCPs) about their diagnosis, treatment, and quality of life. Low literacy rates, fear of cancer and the cultural taboos associated with breast cancer, create hurdles difficult to overcome. Despite a large number of education campaigns, none offer a multilingual, multicultural solution leaping these hurdles for MBC patients. Methods: A USER Design Thinking Model Framework (Beaumont, 2011) with 4 cyclical phases: (1)USER: understand the needs of patients and stakeholders; (2)SYSTEM: understand the communication along the patient pathway; (3)ESTABLISH: determine patient centered needs; (4)REALIZE: develop physical tools to address needs and, going back to the USER phase, test with patients and stakeholders, evaluating their usefulness along the patient pathway to determine recommendations for the next round of improvements. Tools are being developed at a National Cancer Institute, before being trialed in two different cliniacal settings. Results: Based on this project's ground breaking Stage 1 targeting women with early stages of breast cancer, we anticipate the results will show that visual metaphors overcome health literacy and communication issues for MBC patients not engaged in treatment plans. Stage 1 results showed the majority of participants (n=67) were able to interpret visuals accurately without the use of text in terms of symptoms (65%) and anatomy (86%) of breast cancer. Health practitioners using the materials reported the images were effective in communicating symptoms. Conclusion: A visual approach to improving communication between MBC patients and their HCPs seems possible based on positive results of patient interpretation and practitioner feedback from research and testing with early stage breast cancer. Visual tools help HCPs engage patients with information to enable them to understand their disease, and goals and nature of treatments, so they can make informed decisions right for them. 1. www.mbcalliance.org/ 2. Pfizer Oncology. 2014: Breast Cancer: A Story Half Told, p.9. www.pfizer.com/files/news/Statement_ofNeed.pdf Citation Format: Beaumont C, Crawford-Gray K. Communication design toolkit for metastatic breast cancer patients and their health care professionals. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P5-09-05.
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