Cargando…
Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial
BACKGROUND: Chemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41% to 79% in high-risk women. Women at high risk of developing breast cancer face the complex decision of whether to take selective estro...
Autores principales: | , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications
2021
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8262666/ https://www.ncbi.nlm.nih.gov/pubmed/34100769 http://dx.doi.org/10.2196/23839 |
_version_ | 1783719228410429440 |
---|---|
author | Jones, Tarsha Guzman, Ashlee Silverman, Thomas Freeman, Katherine Kukafka, Rita Crew, Katherine |
author_facet | Jones, Tarsha Guzman, Ashlee Silverman, Thomas Freeman, Katherine Kukafka, Rita Crew, Katherine |
author_sort | Jones, Tarsha |
collection | PubMed |
description | BACKGROUND: Chemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41% to 79% in high-risk women. Women at high risk of developing breast cancer face the complex decision of whether to take selective estrogen receptor modulators or aromatase inhibitors for breast cancer chemoprevention. RealRisks is a patient-centered, web-based decision aid (DA) designed to promote the understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision making about taking chemoprevention. OBJECTIVE: This study aims to understand the perceptions of women at high risk of developing breast cancer regarding their experience with using RealRisks—a DA designed to promote the uptake of breast cancer chemoprevention—and to understand their information needs. METHODS: We completed enrollment to a randomized controlled trial among 300 racially and ethnically diverse women at high risk of breast cancer who were assigned to standard educational materials alone or such materials in combination with RealRisks. We conducted semistructured interviews with a subset of 21 high-risk women enrolled in the intervention arm of the randomized controlled trial who initially accessed the tool (on average, 1 year earlier) to understand how they interacted with the tool. All interviews were audio recorded, transcribed verbatim, and compared with digital audio recordings to ensure the accuracy of the content. We used content analysis to generate themes. RESULTS: The mean age of the 21 participants was 58.5 (SD 10.1) years. The participants were 5% (1/21) Asian, 24% (5/21) Black or African American, and 71% (15/21) White; 10% (2/21) of participants were Hispanic or Latina. All participants reported using RealRisks after being granted access to the DA. In total, 4 overarching themes emerged from the qualitative analyses: the acceptability of the intervention, specifically endorsed elements of the DA, recommendations for improvements, and information needs. All women found RealRisks to be acceptable and considered it to be helpful (21/21, 100%). Most women (13/21, 62%) reported that RealRisks was easy to navigate, user-friendly, and easily accessible on the web. The majority of women (18/21, 86%) felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options and that RealRisks informed their (17/21, 81%) decision about whether or not to take chemoprevention. Some women (9/21, 43%) shared recommendations for improvements, as they wanted more tailoring based on user characteristics, felt that the DA was targeting a narrow population of Hispanic or Latina by using graphic novel–style narratives, wanted more understandable terminology, and felt that the tool placed a strong emphasis on chemoprevention drugs. CONCLUSIONS: This qualitative study demonstrated the acceptability of the RealRisks web-based DA among a diverse group of high-risk women, who provided some recommendations for improvement. |
format | Online Article Text |
id | pubmed-8262666 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | JMIR Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-82626662021-07-27 Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial Jones, Tarsha Guzman, Ashlee Silverman, Thomas Freeman, Katherine Kukafka, Rita Crew, Katherine J Med Internet Res Original Paper BACKGROUND: Chemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41% to 79% in high-risk women. Women at high risk of developing breast cancer face the complex decision of whether to take selective estrogen receptor modulators or aromatase inhibitors for breast cancer chemoprevention. RealRisks is a patient-centered, web-based decision aid (DA) designed to promote the understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision making about taking chemoprevention. OBJECTIVE: This study aims to understand the perceptions of women at high risk of developing breast cancer regarding their experience with using RealRisks—a DA designed to promote the uptake of breast cancer chemoprevention—and to understand their information needs. METHODS: We completed enrollment to a randomized controlled trial among 300 racially and ethnically diverse women at high risk of breast cancer who were assigned to standard educational materials alone or such materials in combination with RealRisks. We conducted semistructured interviews with a subset of 21 high-risk women enrolled in the intervention arm of the randomized controlled trial who initially accessed the tool (on average, 1 year earlier) to understand how they interacted with the tool. All interviews were audio recorded, transcribed verbatim, and compared with digital audio recordings to ensure the accuracy of the content. We used content analysis to generate themes. RESULTS: The mean age of the 21 participants was 58.5 (SD 10.1) years. The participants were 5% (1/21) Asian, 24% (5/21) Black or African American, and 71% (15/21) White; 10% (2/21) of participants were Hispanic or Latina. All participants reported using RealRisks after being granted access to the DA. In total, 4 overarching themes emerged from the qualitative analyses: the acceptability of the intervention, specifically endorsed elements of the DA, recommendations for improvements, and information needs. All women found RealRisks to be acceptable and considered it to be helpful (21/21, 100%). Most women (13/21, 62%) reported that RealRisks was easy to navigate, user-friendly, and easily accessible on the web. The majority of women (18/21, 86%) felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options and that RealRisks informed their (17/21, 81%) decision about whether or not to take chemoprevention. Some women (9/21, 43%) shared recommendations for improvements, as they wanted more tailoring based on user characteristics, felt that the DA was targeting a narrow population of Hispanic or Latina by using graphic novel–style narratives, wanted more understandable terminology, and felt that the tool placed a strong emphasis on chemoprevention drugs. CONCLUSIONS: This qualitative study demonstrated the acceptability of the RealRisks web-based DA among a diverse group of high-risk women, who provided some recommendations for improvement. JMIR Publications 2021-06-08 /pmc/articles/PMC8262666/ /pubmed/34100769 http://dx.doi.org/10.2196/23839 Text en ©Tarsha Jones, Ashlee Guzman, Thomas Silverman, Katherine Freeman, Rita Kukafka, Katherine Crew. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 08.06.2021. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included. |
spellingShingle | Original Paper Jones, Tarsha Guzman, Ashlee Silverman, Thomas Freeman, Katherine Kukafka, Rita Crew, Katherine Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial |
title | Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial |
title_full | Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial |
title_fullStr | Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial |
title_full_unstemmed | Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial |
title_short | Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial |
title_sort | perceptions of racially and ethnically diverse women at high risk of breast cancer regarding the use of a web-based decision aid for chemoprevention: qualitative study nested within a randomized controlled trial |
topic | Original Paper |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8262666/ https://www.ncbi.nlm.nih.gov/pubmed/34100769 http://dx.doi.org/10.2196/23839 |
work_keys_str_mv | AT jonestarsha perceptionsofraciallyandethnicallydiversewomenathighriskofbreastcancerregardingtheuseofawebbaseddecisionaidforchemopreventionqualitativestudynestedwithinarandomizedcontrolledtrial AT guzmanashlee perceptionsofraciallyandethnicallydiversewomenathighriskofbreastcancerregardingtheuseofawebbaseddecisionaidforchemopreventionqualitativestudynestedwithinarandomizedcontrolledtrial AT silvermanthomas perceptionsofraciallyandethnicallydiversewomenathighriskofbreastcancerregardingtheuseofawebbaseddecisionaidforchemopreventionqualitativestudynestedwithinarandomizedcontrolledtrial AT freemankatherine perceptionsofraciallyandethnicallydiversewomenathighriskofbreastcancerregardingtheuseofawebbaseddecisionaidforchemopreventionqualitativestudynestedwithinarandomizedcontrolledtrial AT kukafkarita perceptionsofraciallyandethnicallydiversewomenathighriskofbreastcancerregardingtheuseofawebbaseddecisionaidforchemopreventionqualitativestudynestedwithinarandomizedcontrolledtrial AT crewkatherine perceptionsofraciallyandethnicallydiversewomenathighriskofbreastcancerregardingtheuseofawebbaseddecisionaidforchemopreventionqualitativestudynestedwithinarandomizedcontrolledtrial |