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BMC Medical Informatics and Decision Making
Published in: BMC Medical Informatics and Decision Making 1/2018

Open Access 01-12-2018 | Research article

Are publicly available internet resources enabling women to make informed fertility preservation decisions before starting cancer treatment: an environmental scan?

Authors: N. Mahmoodi, H. L. Bekker, N. V. King, J. Hughes, G. L. Jones, on behalf of the Cancer, Fertility and Me research team

Published in: BMC Medical Informatics and Decision Making | Issue 1/2018

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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.
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Metadata
Title
Are publicly available internet resources enabling women to make informed fertility preservation decisions before starting cancer treatment: an environmental scan?
Authors
N. Mahmoodi
H. L. Bekker
N. V. King
J. Hughes
G. L. Jones
on behalf of the Cancer, Fertility and Me research team
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2018
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-018-0698-3

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