Available online 11 February 2023

Author links open overlay panel, , , , , , AbstractBackground

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.

Objectives

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), two improved knowledge and four 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

Section snippetsWhat this Review Adds

There is evidence that decision support tools improve patient decision making in adult healthcare. Comparatively less is known about the availability and outcomes of the use of decision support tools in pediatric and adolescent healthcare.

We found that tools for parents making decisions about their child's chronic health condition are difficult to read and many do not meet international standards for quality.

How to Use this Review

Clinicians could use our central list of identified decision support tools with parents of children with chronic health conditions. Future research is indicated to develop decision support tools that are more accessible and could be used with children.

Design

We conducted an environmental scan to identify free, online decision support tools that are designed for parents to use while making decisions for their children with chronic health conditions. This methodology, which is widely used to identify decision support tools, has been recommended by decision making experts to understand tools available to patients.11,12 Google searches were conducted to mimic the user experience. The Google searches were supplemented by searching decision support tool

Aim 1a (identify)

We identified 2403 records combined across all sources. This included 803 decision support tools from repositories and key informants and 1600 URLs from the Google search. From these records, we screened 83 decision support tools with a total of 21 decision support tools meeting the inclusion criteria (see Figure 1). The majority (n=34) were excluded as they did not meet the definition of a chronic condition (exclusion criteria (i); see Figure 1, for other exclusion reasons). Seven decision

Main findings

We found 21 free, online decision support tools available for parents of children across a variety of chronic health conditions. These tools engage parents in the decision-making process beyond simply providing information. Most decision support tools we found were for parents making management (pharmaceutical or non-pharmaceutical) decisions for their children with a chronic, physical condition. Two-thirds met the minimum IPDAS qualifying criteria, meaning they provided sufficient detail for

Conclusions

We found 21 free, online decision support tools for parents of children with chronic health conditions. Most tools were for parents making decisions about medical management (both pharmaceutical and non-pharmaceutical) of their child's physical chronic condition. The decision support tools were difficult to read and of variable quality. We found limited evidence these decision support tools lead to a change in parents’ knowledge or alignment of their preferences with their final decision.

Declaration of Competing Interest

The authors have no conflicts of interest relevant to this article to disclose.

Funding/support

This project is supported by the Graduate School of Health Seed Grants Program 2021 (University of Technology Sydney).

Acknowledgements

Thank you to Ana Shah Hosseani, Information Services Librarian, University of Technology Sydney Library for assistance developing the search strategy. Thank you to the key informants who responded to our emails, provided advice and suggested decision support tools.

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© 2023 Published by Elsevier Inc. on behalf of Academic Pediatric Association