Using Mixed Methods with Multiple Stakeholders to Inform Development of a Breast Cancer Screening Decision Aid for Women with Limited Health Literacy

Background. When stakeholders offer divergent input, it can be unclear how to prioritize information for decision aids (DAs) on mammography screening. Objectives. This analysis triangulates perspectives (breast cancer screening experts, primary care providers [PCPs], and patients with limited health literacy [LHL]) to understand areas of divergent and convergent input across stakeholder groups in developing a breast cancer screening DA for younger women with LHL. Design. A modified online Delphi panel of 8 experts rated 57 statements for inclusion in a breast cancer screening DA over three rounds. Individual interviews with 25 patients with LHL and 20 PCPs from a large safety net hospital explored informational needs about mammography decision making. Codes from the qualitative interviews and open-ended responses from the Delphi process were mapped across stakeholders to ascertain areas where stakeholder preferences converged or diverged. Results. Four themes regarding informational needs were identified regarding 1) the benefits and harms of screening, 2) different screening modalities, 3) the experience of mammography, and 4) communication about breast cancer risk. Patients viewed pain as the primary harm, while PCPs and experts emphasized the harm of false positives. Patients, but not PCPs or experts, felt that information about the process of getting a mammogram was important. PCPs believed that mammography was the only evidence-based screening modality, while patients believed breast self-exam was also important for screening. All stakeholders described incorporating personal risk information as important. Limitations. As participants came from one hospital, perceptions may reflect local practices. The Delphi sample size was small. Conclusions. Patients, experts, and PCPs had divergent views on the most important information needed for screening decisions. More evidence is needed to guide integration of multiple stakeholder perspectives into the content of DAs. [Box: see text]

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Health Literacy and Breast Cancer Screening among Mexican American Women in South Texas

Journal of Cancer Education ◽

10.1007/s13187-011-0239-6 ◽

2011 ◽

Vol 27 (1) ◽

pp. 132-137 ◽

Cited By ~ 31

Author(s):

José A. Pagán ◽

Cynthia J. Brown ◽

David A. Asch ◽

Katrina Armstrong ◽

Elena Bastida ◽

...

Keyword(s):

Breast Cancer ◽

Health Literacy ◽

Cancer Screening ◽

Breast Cancer Screening ◽

Mexican American ◽

South Texas ◽

Mexican American Women ◽

American Women

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Towards informed decisions on breast cancer screening: Development and pilot testing of a decision aid for Chinese women

Patient Education and Counseling ◽

10.1016/j.pec.2015.04.014 ◽

2015 ◽

Vol 98 (8) ◽

pp. 961-969 ◽

Cited By ~ 2

Author(s):

Irene O.L. Wong ◽

Wendy W.T. Lam ◽

Cheuk Nam Wong ◽

Benjamin J. Cowling ◽

Gabriel M. Leung ◽

...

Keyword(s):

Breast Cancer ◽

Cancer Screening ◽

Breast Cancer Screening ◽

Decision Aid ◽

Chinese Women ◽

Pilot Testing ◽

Informed Decisions

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Decision aid on breast cancer screening reduces attendance rate: results of a large-scale, randomized, controlled study by the DECIDEO group

Oncotarget ◽

10.18632/oncotarget.7332 ◽

2016 ◽

Vol 7 (11) ◽

pp. 12885-12892 ◽

Cited By ~ 9

Author(s):

Aurelie Bourmaud ◽

Patricia Soler-Michel ◽

Mathieu Oriol ◽

Véronique Regnier ◽

Fabien Tinquaut ◽

...

Keyword(s):

Breast Cancer ◽

Cancer Screening ◽

Breast Cancer Screening ◽

Decision Aid ◽

Large Scale ◽

Randomized Controlled Study ◽

Controlled Study ◽

Attendance Rate ◽

Randomized Controlled

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Deaf Adults’ Health Literacy and Access to Health Information: Protocol for a Multicenter Mixed Methods Study

JMIR Research Protocols ◽

10.2196/14889 ◽

2019 ◽

Vol 8 (10) ◽

pp. e14889 ◽

Cited By ~ 1

Author(s):

Michael M McKee ◽

Peter C Hauser ◽

Sara Champlin ◽

Michael Paasche-Orlow ◽

Kelley Wyse ◽

...

Keyword(s):

Mixed Methods ◽

Health Literacy ◽

Data Collection ◽

Health Information ◽

Visual Learning ◽

Mixed Methods Study ◽

Web Based ◽

Literacy Interventions ◽

Limited Health Literacy ◽

Limited Health

Background Deaf American Sign Language (ASL) users often struggle with limited health literacy compared with their hearing peers. However, the mechanisms driving limited health literacy and how this may impact access to and understanding of health information for Deaf individuals have not been determined. Deaf individuals are more likely than hearing individuals to use the internet, yet they continue to report significant barriers to health information. This study presents an opportunity to identify key targets that impact information access for a largely marginalized population. Objective This study aims to elucidate the role of information marginalization on health literacy in Deaf ASL users and to better understand the mechanisms of health literacy in this population for the purpose of identifying viable targets for future health literacy interventions. Methods This is an exploratory mixed methods study to identify predictors and moderators of health literacy in the Deaf population. These predictors of health literacy will be used to inform the second step that qualitatively explains the findings, including how Deaf individuals access and understand Web-based health information. Multiple interviewer- and computer-based instruments underwent translation and adaptation, from English to ASL, to make them accessible for the Deaf participants in our study. A planned sample of 450 Deaf ASL users and 450 hearing native English speakers, aged 18 to 70 years, will be recruited from 3 partnering sites: Rochester, NY; Flint, MI; and Chicago, IL. These individuals will participate in a single data collection visit. A subset of participants (approximately 30) with key characteristics of interest will be invited for a second data collection visit to observe and inquire more about their ability to directly access, navigate, and comprehend Web-based health information. The study will help assess how the ways health literacy and information are visualized may differ between Deaf individuals and hearing individuals. The study will also survey participants’ ownership and use of computer and mobile devices and their level of Web-based information use, including health information. Results Adaptation and translation of protocols and instruments have been completed and are now in use for the study. Recruitment is underway and will continue until late 2020. Results from this study will be used to provide a guide on how to structure Web-based health information in a way that maximizes accessibility and improves health literacy for Deaf individuals. Conclusions The results from this mixed methods proposal will advance what is known about health literacy and health information accessibility for Deaf individuals. This innovative study will generate rich data on how to formulate health information and health literacy interventions more accurately to take advantage of visual learning skills. International Registered Report Identifier (IRRID) PRR1-10.2196/14889

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Development of a plain-language guide for discussing breast cancer genetic counseling and testing with patients with limited health literacy

Supportive Care in Cancer ◽

10.1007/s00520-020-05800-7 ◽

2020 ◽

Author(s):

J. A. M van der Giessen ◽

M. G. E. M. Ausems ◽

E. van Riel ◽

A. de Jong ◽

M. P. Fransen ◽

...

Keyword(s):

Breast Cancer ◽

Genetic Counseling ◽

Health Literacy ◽

Healthcare Professionals ◽

Cancer Genetic Counseling ◽

Plain Language ◽

Cancer Genetic ◽

Limited Health Literacy ◽

Counseling And Testing ◽

Limited Health

Abstract Purpose Due to limited health literacy and resulting ineffective communication between healthcare professionals and patients, not all eligible patients are offered breast cancer genetic counseling and testing. We aimed to develop a plain-language guide to increase effective communication about genetic counseling and testing with breast cancer patients with limited health literacy. Methods Together with oncological healthcare professionals, we drafted a list of jargon words frequently used during (breast) cancer genetic counseling. In a focus group interview with breast cancer counselees with limited health literacy, who had received genetic counseling before, we reformulated these words in plain language. Low-literate individuals, who are not familiar with breast cancer care or genetic counseling, reflected on the draft of the guide. Completeness, acceptability, and perceived usability were tested in an online questionnaire among healthcare professionals. Results The result is a plain-language guide for genetic counseling and testing with 33 frequently used jargon words and a reformulation of these words in plain language. Acceptability and perceived usefulness of the guide among healthcare professionals (n = 58) were high. Conclusion The plain-language guide provides opportunities to facilitate communication about genetic counseling and testing with patients with limited health literacy and could enhance opportunities for patients to make informed decisions to participate in genetic testing. As the intention from healthcare professionals to use the plain-language guide is high, implementation of the guide in a real-life setting seems promising.

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Decision aid for women considering breast cancer screening

International Journal of Technology Assessment in Health Care ◽

10.1017/s026646231100050x ◽

2011 ◽

Vol 27 (4) ◽

pp. 357-362 ◽

Cited By ~ 6

Author(s):

Iris Pasternack ◽

Ulla Saalasti-Koskinen ◽

Marjukka Mäkelä

Keyword(s):

Breast Cancer ◽

Cancer Screening ◽

Breast Cancer Screening ◽

Decision Aid ◽

Service Providers ◽

Screening Program ◽

User Participation ◽

Dissemination And Implementation ◽

European Guidelines ◽

Cancer Screening Program

Objectives: The aim of this study was to describe the process and challenges of developing a decision aid for the national public breast cancer screening program in Finland.Methods: An expert team with stakeholder representation used European guidelines and other literature as basis for selecting relevant content and format for the decision aid for breast cancer screening. Feedback from women was sought for the draft documents.Results: A decision aid attached to the invitation letter for screening was considered the best way to ensure access to information. In addition, tailored letter templates for all phases of the screening program, a poster, and a public website were developed. Initial feedback from users (women, professionals, and service providers), was mainly positive. Six months after publishing, the implementation of the decision aid was still incomplete.Conclusions: Providing balanced information for women invited to breast cancer screening is demanding and requires careful planning. Professionals and service providers need to be engaged in the HTA process to ensure proper dissemination and implementation of the information. End user participation is essential in the formulation of information. There is a need to follow up the implementation of the decision aid.

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