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

BMC Med Inform Decis Mak. 2018 Nov 19;18(1):104. doi: 10.1186/s12911-018-0698-3.

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.

Keywords: Cancer treatment; Environmental scan; Fertility preservation; Patient decision aid; Shared decision making; eHealth.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Consumer Health Information* / statistics & numerical data
  • Decision Making*
  • Decision Support Techniques*
  • Female
  • Fertility Preservation*
  • Humans
  • Internet* / statistics & numerical data
  • Neoplasms / therapy*