Co-design of an Easy Read survey assessing bone-health risk factors in Australian adults with Down syndrome: A pilot study

Michelle Maugham-Macan; Ruby De Greef; Catherine Franklin; Katie Brooker

doi:10.1016/j.pecglo.2026.100025

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Co-design of an Easy Read survey assessing bone-health risk factors in Australian adults with Down syndrome: A pilot study

Journal article

Open access

Peer reviewed

Co-design of an Easy Read survey assessing bone-health risk factors in Australian adults with Down syndrome: A pilot study

Michelle Maugham-Macan, Ruby De Greef, Catherine Franklin and Katie Brooker

PEC Global, Vol.2, pp.1-4

2026

DOI: https://doi.org/10.1016/j.pecglo.2026.100025

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Abstract

Down syndrome

Bone health

Survey

Co-design

Easy Read

Background Adults with Down syndrome appear to develop osteoporosis earlier than the general population, but the relative contributions of modifiable and non-modifiable risk factors are poorly characterised, and no Australian data exist. Objective To develop and pilot a co-designed Easy Read online survey of bone-health risk factors in Australian adults with Down syndrome and obtain preliminary descriptive data to inform a larger study. Method We co-designed an anonymous, online Qualtrics survey with a person with intellectual disability. Items covered modifiable lifestyle factors, family history, and secondary causes of poor bone health. Adults (≥18 years) with non-mosaic Down syndrome were recruited through Down Syndrome Association Queensland. Descriptive statistics were calculated. Results Seven adults (5 female, 2 male; aged 24–40 years) responded and completed the full survey with no missing responses. One participant started but did not finish the survey. Most met targets for modifiable factors: 6/7 took vitamin D supplements, 5/7 consumed three daily dairy serves, none smoked, and all reported ≤ 1 standard drink per week. Non-modifiable burden was notable: 4/7 reported a family history of fracture or osteoporosis, 3/7 thyroid disease, and 2/7 malabsorption. One 39-year-old participant had diagnosed osteoporosis. Only 1/7 reported their doctor had discussed bone health with them. Conclusion The co-designed Easy Read survey was developed and piloted. Findings support a larger, nationally recruited study with clinical measures.

Details

Title: Co-design of an Easy Read survey assessing bone-health risk factors in Australian adults with Down syndrome: A pilot study
Authors: Michelle Maugham-Macan (Corresponding Author) - University of the Sunshine Coast
Ruby De Greef (Author) - The University of Queensland
Catherine Franklin (Author) - The University of Queensland
Katie Brooker (Author) - The University of Queensland
Publication details: PEC Global, Vol.2, pp.1-4
Publisher: Elsevier BV
Date published: 2026
DOI: 10.1016/j.pecglo.2026.100025
ISSN: 3117-468X
Organisation Unit: School of Health - Biomedicine; Healthy Ageing Research Cluster; Cancer Research Cluster
Language: English
Record Identifier: 991266496102621
Output Type: Journal article

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