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Exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors
BACKGROUND: Approximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finish treatment. Counseling about the risk of infertility prior to cancer treatment has been proven to improve quality of life after cancer treatment. As a result of this, guidelines foc...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9351061/ https://www.ncbi.nlm.nih.gov/pubmed/35922784 http://dx.doi.org/10.1186/s12905-022-01901-z |
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author | Sparidaens, Ellen Marie Beerendonk, Catharina C. M. Fleischer, Kathrin Nelen, Willianne L. D. M. Braat, Didi D. M. Hermens, Rosella P. M. G. |
author_facet | Sparidaens, Ellen Marie Beerendonk, Catharina C. M. Fleischer, Kathrin Nelen, Willianne L. D. M. Braat, Didi D. M. Hermens, Rosella P. M. G. |
author_sort | Sparidaens, Ellen Marie |
collection | PubMed |
description | BACKGROUND: Approximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finish treatment. Counseling about the risk of infertility prior to cancer treatment has been proven to improve quality of life after cancer treatment. As a result of this, guidelines focus on informing women on this topic prior to treatment. However, it is equally important to provide fertility related information after primary treatment has been completed, when the wish to conceive might become actual. Therefore, the aim of this study was to identify the fertility and early menopause related information needs of young breast cancer survivors and to design, develop and implement online information material with input of stakeholders. METHODS: A phenomenological qualitative study consisting of four phases was performed: identification of information needs through semi-structured interviews from a professional perspective (1) and a patient perspective (2). Exploration of stakeholders perspective regarding development and implementation of online information material (3) and development and implementation of the information material (4). RESULTS: Professionals indicated that there are no guidelines regarding the provision of fertility related information during cancer survivorship. Survivors reported unmet information needs. Women identified the following as most important information needs (a) fertility preservation options, (b) the risk of menopause or infertility, and (c) long term consequences of early menopause. A wide range of stakeholders involved in breast cancer care were interviewed. Based on their proposed design the information material was implemented on a nationwide website aiming at informing and supporting breast cancer patients. CONCLUSIONS: Fertility and early menopause related information needs of young breast cancer survivors and their professionals were identified. Information material has been designed, developed and nationally implemented. This way, professionals in breast cancer care are provided with an information tool that helps them meet the information needs and preferences of their patients. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12905-022-01901-z. |
format | Online Article Text |
id | pubmed-9351061 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-93510612022-08-05 Exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors Sparidaens, Ellen Marie Beerendonk, Catharina C. M. Fleischer, Kathrin Nelen, Willianne L. D. M. Braat, Didi D. M. Hermens, Rosella P. M. G. BMC Womens Health Research Article BACKGROUND: Approximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finish treatment. Counseling about the risk of infertility prior to cancer treatment has been proven to improve quality of life after cancer treatment. As a result of this, guidelines focus on informing women on this topic prior to treatment. However, it is equally important to provide fertility related information after primary treatment has been completed, when the wish to conceive might become actual. Therefore, the aim of this study was to identify the fertility and early menopause related information needs of young breast cancer survivors and to design, develop and implement online information material with input of stakeholders. METHODS: A phenomenological qualitative study consisting of four phases was performed: identification of information needs through semi-structured interviews from a professional perspective (1) and a patient perspective (2). Exploration of stakeholders perspective regarding development and implementation of online information material (3) and development and implementation of the information material (4). RESULTS: Professionals indicated that there are no guidelines regarding the provision of fertility related information during cancer survivorship. Survivors reported unmet information needs. Women identified the following as most important information needs (a) fertility preservation options, (b) the risk of menopause or infertility, and (c) long term consequences of early menopause. A wide range of stakeholders involved in breast cancer care were interviewed. Based on their proposed design the information material was implemented on a nationwide website aiming at informing and supporting breast cancer patients. CONCLUSIONS: Fertility and early menopause related information needs of young breast cancer survivors and their professionals were identified. Information material has been designed, developed and nationally implemented. This way, professionals in breast cancer care are provided with an information tool that helps them meet the information needs and preferences of their patients. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12905-022-01901-z. BioMed Central 2022-08-03 /pmc/articles/PMC9351061/ /pubmed/35922784 http://dx.doi.org/10.1186/s12905-022-01901-z Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Article Sparidaens, Ellen Marie Beerendonk, Catharina C. M. Fleischer, Kathrin Nelen, Willianne L. D. M. Braat, Didi D. M. Hermens, Rosella P. M. G. Exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors |
title | Exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors |
title_full | Exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors |
title_fullStr | Exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors |
title_full_unstemmed | Exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors |
title_short | Exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors |
title_sort | exploration of fertility and early menopause related information needs and development of online information for young breast cancer survivors |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9351061/ https://www.ncbi.nlm.nih.gov/pubmed/35922784 http://dx.doi.org/10.1186/s12905-022-01901-z |
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