Mahmoodi, N, Bekker, HL orcid.org/0000-0003-1978-5795, King, NV orcid.org/0000-0002-4215-2323 et al. (2 more authors) (2018) Are publicly available internet resources enabling women to make informed fertility preservation decisions before starting cancer treatment: an environmental scan? BMC Medical Informatics and Decision Making, 18 (1). ARTN 104. ISSN 1472-6947
Abstract
Background: To identify publicly available internet resources and assess their likelihood to support women making informed decisions about, and between, fertility preservation procedures before starting their cancer treatment.
Methods: A survey of publically available internet resources utilising an environmental scan method. Inclusion criteria were applied to hits from searches of three data sources (November 2015; repeated June 2017): Google (Chrome) for patient resources; repositories for clinical guidelines and projects; distribution email lists to contact patient decision aid experts. The Data Extraction Sheet applied to eligible resources elicited: resource characteristics; informed and shared decision making components; engagement health services.
Results: Four thousand eight hundred fifty one records were identified; 24 patient resources and 0 clinical guidelines met scan inclusion criteria. Most resources aimed to inform women with cancer about fertility preservation procedures and infertility treatment options, but not decision making between options. There was a lack of consistency about how health conditions, decision problems and treatment options were described, and resources were difficult to understand.
Conclusions: Unless developed as part of a patient decision aid project, resources did not include components to support proactively women’s fertility preservation decisions. Current guidelines help people deliver information relevant to treatment options within a single disease pathway; we identified five additional components for patient decision aid checklists to support more effectively people’s treatment decision making across health pathways, linking current with future health problems.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
Keywords: | Patient decision aid; Shared decision making; Fertility preservation; Cancer treatment; eHealth; Environmental scan |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Cancer and Pathology (LICAP) > Patient Centred Outcomes Research The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Health Economics (Leeds) The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Psychiatry and Behavioural Sciences (Leeds) |
Funding Information: | Funder Grant number Teenage Cancer Trust NO EXT REF GIVEN Yorkshire Cancer Research Not Known |
Depositing User: | Symplectic Publications |
Date Deposited: | 06 Nov 2018 12:00 |
Last Modified: | 25 Jun 2023 21:34 |
Status: | Published |
Publisher: | BioMed Central |
Identification Number: | 10.1186/s12911-018-0698-3 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:138213 |