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Free Online Decision Tools to Support Parents Making Decisions About Their Children's Chronic Health Condition: An
Tessa Wilkin1, Ami Stott1, Jody L Lin2
1Discipline of Genetic Counselling, University of Technology Sydney (T Wilkin, A Stott, A McEwen, and E Turbitt), Ultimo, NSW, Australia.
Background:
Medical decisions parents make on their children's behalf can be challenging. Free online decision support tools are created to help parents faced with these decisions.
Objective:
We used an environmental scan to identify free, online tools that support parents in making decisions about their children's chronic health condition. We described the tools and assessed their potential to harm, content, development process, readability, and whether their use changed decision makers' knowledge and alignment of their preferences with their final decision.
Data Sources And Eligibility:
Decision aid repositories, Google searches, and key informants identified decision support tools. Eligible tools were freely available online and for parents of children with chronic health conditions.
Appraisal Methods:
Two reviewers independently assessed the tools' quality based on the International Patient Decision Aid Standards (IPDAS). Tool readability was assessed using the Flesch Reading Ease test.
Results:
From 21 free, online decision support tools, 14 (67%) provided sufficient detail for making a specific decision (IPDAS qualifying criteria). None sufficiently met IPDAS certification criteria necessary to reduce the possibility of patient harms when using the tool. Three (14%) were fairly easy or easy to read. Of those evaluated by developers (n = 6), 2 improved knowledge and 4 improved alignment of preferences with the available options.
Limitations:
Google searches and key informant sources are not replicable.
Conclusions:
Free, online decision support tools for parents of children with chronic health conditions are of variable quality, most are difficult to read, and there is limited evidence their use achieves intended outcomes.
Registration Number:
Registered with Open Science Framework 20 July 2021(AEST) osf.io/b94yj.
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