Free Online Decision Tools to Support Parents Making Decisions About Their Children's Chronic Health Condition: An Environmental Scan.


Journal

Academic pediatrics
ISSN: 1876-2867
Titre abrégé: Acad Pediatr
Pays: United States
ID NLM: 101499145

Informations de publication

Date de publication:
07 2023
Historique:
received: 31 08 2022
revised: 31 01 2023
accepted: 04 02 2023
medline: 10 7 2023
pubmed: 13 2 2023
entrez: 12 2 2023
Statut: ppublish

Résumé

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. 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. 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. 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. 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. Google searches and key informant sources are not replicable. 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. Registered with Open Science Framework 20 July 2021(AEST) osf.io/b94yj.

Sections du résumé

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.

Identifiants

pubmed: 36775123
pii: S1876-2859(23)00018-9
doi: 10.1016/j.acap.2023.02.002
pii:
doi:

Types de publication

Journal Article Review Research Support, N.I.H., Extramural

Langues

eng

Sous-ensembles de citation

IM

Pagination

874-883

Subventions

Organisme : NIAMS NIH HHS
ID : K23 AR079778
Pays : United States

Informations de copyright

Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.

Auteurs

Tessa Wilkin (T)

Discipline of Genetic Counselling, University of Technology Sydney (T Wilkin, A Stott, A McEwen, and E Turbitt), Ultimo, NSW, Australia.

Ami Stott (A)

Discipline of Genetic Counselling, University of Technology Sydney (T Wilkin, A Stott, A McEwen, and E Turbitt), Ultimo, NSW, Australia.

Jody L Lin (JL)

Department of Pediatrics, University of Utah Health (JL Lin), Salt Lake City, Utah.

Joshua Pate (J)

Discipline of Physiotherapy, University of Technology Sydney (J Pate and A Verhagen), Ultimo, NSW, Australia.

Alison McEwen (A)

Discipline of Genetic Counselling, University of Technology Sydney (T Wilkin, A Stott, A McEwen, and E Turbitt), Ultimo, NSW, Australia.

Arianne Verhagen (A)

Discipline of Physiotherapy, University of Technology Sydney (J Pate and A Verhagen), Ultimo, NSW, Australia.

Erin Turbitt (E)

Discipline of Genetic Counselling, University of Technology Sydney (T Wilkin, A Stott, A McEwen, and E Turbitt), Ultimo, NSW, Australia. Electronic address: erin.turbitt@uts.edu.au.

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