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

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.