scholarly journals The "Begin Exploring Fertility Options, Risks and Expectations" (BEFORE) decision aid: development and alpha testing of a fertility tool for premenopausal breast cancer patients

Author(s):  
Brittany Speller ◽  
Kelly Metcalfe ◽  
Erin D. Kennedy ◽  
Marcia Facey ◽  
Ellen Greenblatt ◽  
...  

Abstract Background Premenopausal breast cancer patients are at risk of treatment-related infertility. Many patients do not receive sufficient fertility information before treatment. As such, our team developed and alpha tested the Begin Exploring Fertility Options, Risks, and Expectations decision aid (BEFORE DA). Methods The BEFORE DA development process was guided by the International Patient Decision Aids Standards and the Ottawa Decision Support Framework. Our team used integrated knowledge translation by collaborating with multiple stakeholders throughout the development process including breast cancer survivors, multi-disciplinary health care providers (HCPs), advocates, and cancer organization representatives. Based on previously conducted literature reviews and a needs assessment by our team – we developed a paper prototype. The paper prototype was finalized at an engagement meeting with stakeholders and created into a graphically designed paper and mirrored online decision aid. Alpha testing was conducted with new and previously engaged stakeholders through a questionnaire, telephone interviews, or focus group. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. Results Our team developed an 18-page paper prototype containing information deemed valuable by stakeholders for fertility decision-making. The engagement meeting brought together 28 stakeholders to finalize the prototype. Alpha testing of the paper and online BEFORE DA occurred with 17 participants. Participants found the BEFORE DA usable, acceptable, and most provided enthusiastic support for its use with premenopausal breast cancer patients facing a fertility decision. Participants also identified areas for improvement including clarifying content/messages and modifying the design/photos. The final BEFORE DA is a 32-page paper and mirrored online decision aid (https://fertilityaid.rethinkbreastcancer.com). The BEFORE DA includes information on fertility, fertility options before/after treatment, values clarification, question list, next steps, glossary and reference list, and tailored information on the cost of fertility preservation and additional resources by geographic location. Conclusion The BEFORE DA, designed in collaboration with stakeholders, is a new tool for premenopausal breast cancer patients and HCPs to assist with fertility discussions and decision-making. The BEFORE DA helps to fill the information gap as it is a tool that HCPs can refer patients to for supplementary information surrounding fertility.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 108-108
Author(s):  
Brittany Speller ◽  
Marcia Facey ◽  
Amanda Sissons ◽  
Corinne Daly ◽  
Erin Diane Kennedy ◽  
...  

108 Background: Young breast cancer patients are at risk of temporary or permanent infertility following the administration of gonadotoxic cancer treatments. Currently patients do not feel they receive enough information to make informed fertility decisions before treatment. We aim to determine the fertility-related information health care providers and breast cancer survivors consider valuable to include in a Canadian decision aid (Can-DA) for young breast cancer patients by reviewing existing decision support resources. Methods: A qualitative descriptive approach was used to evaluate 6 decision support resources created in other jurisdictions. Using purposeful sampling, 8 multi-disciplinary health care providers and 8 breast cancer survivors from across Canada evaluated 1 to 2 decision support resources in structured interviews. Interviews were conducted in-person and by telephone from March to June 2016 and ranged in length from 30 to 90 minutes. Interviews were transcribed verbatim, organized in NVivo, and analyzed deductively using the pre-defined sections of the interview guide as a framework. Results: Each decision support resource had valuable components to adapt for the Can-DA. Participants valued the inclusion of Canadian-specific and accurate information on resources for additional support and the success rates and cost ranges of fertility preservation procedures. There were mixed views on the impact and value of including in-depth fertility information such as adoption and other fertility-related options after treatment. Discrepancies were also seen on the value of personal stories and an explicit values clarification exercise. There was consensus on the inclusion of only pertinent fertility-related information that does not replicate information in supplementary patient education material to avoid overwhelming patients. Conclusions: The evaluation provided valuable insight on the information and design features to consider for the Can-DA. Findings will be used in combination with the International Patient Decision Aid Standards criteria to ensure the Can-DA meets the fertility information needs of young breast cancer patients in Canada.


2019 ◽  
Vol 26 (13) ◽  
pp. 4372-4380 ◽  
Author(s):  
Katharine Yao ◽  
Jeff Belkora ◽  
Clara Lee ◽  
Kristine Kuchta ◽  
Catherine Pesce ◽  
...  

2021 ◽  
pp. 1-5
Author(s):  
Ayu Ratuati Setiawan ◽  
Feny Tunjungsari ◽  
Mochamad Aleq Sander

BACKGROUND: Cancer is a disease caused by abnormal growth of body cells that turn malignant and continue to grow uncontrollably. One of the treatments for breast cancer is mastectomy. The quickness of decision-making determines the survival rate of prognosis patients. OBJECTIVE: This study aimed to determine the relationship of self-acceptance with decision-making duration in cancer patients to perform a mastectomy. METHODS: An analytic observation method with cross-sectional design. The samples were taken by purposive sampling method with 50 samples of breast cancer patients. Data collected include age, last level of education, marital status, profession, stage of cancer during mastectomy, self-acceptance score, and decision-making duration to perform a mastectomy. RESULTS: The data analyzed with the Kruskal–Wallis test. The test showed the relationship of self-acceptance (p = 0.027) with decision-making duration in breast cancer patients to perform a mastectomy. CONCLUSION: In Conclusion, there is a relationship of self-acceptance with decision-making duration in breast cancer patients to perform a mastectomy.


2013 ◽  
pp. 311-321
Author(s):  
Catharine Clay ◽  
Alice Andrews ◽  
Dale Vidal

Author(s):  
Ming-Feng Hou ◽  
Fu Ou-Yang ◽  
Chung-Liang Li ◽  
Fang-Ming Chen ◽  
Chieh-Han Chuang ◽  
...  

AbstractIn Western countries, breast cancer tends to occur in older postmenopausal women. However, in Asian countries, the proportion of younger premenopausal breast cancer patients is increasing. Increasing evidence suggests that the gut microbiota plays a critical role in breast cancer. However, studies on the gut microbiota in the context of breast cancer have mainly focused on postmenopausal breast cancer. Little is known about the gut microbiota in the context of premenopausal breast cancer. This study aimed to comprehensively explore the gut microbial profiles, diagnostic value, and functional pathways in premenopausal breast cancer patients. Here, we analyzed 267 breast cancer patients with different menopausal statuses and age-matched female controls. The α-diversity was significantly reduced in premenopausal breast cancer patients, and the β-diversity differed significantly between breast cancer patients and controls. By performing multiple analyses and classification, 14 microbial markers were identified in the different menopausal statuses of breast cancer. Bacteroides fragilis was specifically found in young women of premenopausal statuses and Klebsiella pneumoniae in older women of postmenopausal statuses. In addition, menopausal-specific microbial markers could exhibit excellent discriminatory ability in distinguishing breast cancer patients from controls. Finally, the functional pathways differed between breast cancer patients and controls. Our findings provide the first evidence that the gut microbiota in premenopausal breast cancer patients differs from that in postmenopausal breast cancer patients and shed light on menopausal-specific microbial markers for diagnosis and investigation, ultimately providing a noninvasive approach for breast cancer detection and a novel strategy for preventing premenopausal breast cancer.


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