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The raw data files for "An online pain management program for people with hypermobile Ehlers-Danlos syndrome or Hypermobility Spectrum Disorder: a three-staged development process"

Macquarie University
Cliffton Chan (Aggregated by) Emre Ilhan (Aggregated by) Leslie Nicholson (Aggregated by) Min Tze Chew (Aggregated by)
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ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Adc&rfr_id=info%3Asid%2FANDS&rft_id=info:doi10.25949/24892329.v1&rft.title=The raw data files for An online pain management program for people with hypermobile Ehlers-Danlos syndrome or Hypermobility Spectrum Disorder: a three-staged development process&rft.identifier=https://doi.org/10.25949/24892329.v1&rft.publisher=Macquarie University&rft.description=Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are painful, chronic and multi-systemic conditions. No online pain management programs for hEDS/HSD currently exist. We aimed to develop one by exploring what people with hEDS/HSD want in such programs.A Delphi was conducted via Recap and Lime Survey platforms of two stakeholder groups: participants with hEDS/HSD and healthcare professionals (HCP). Two rounds surveys were conducted. Using topics that reached consensus, the online program was developed. Usability testing was performed using the Systems Usability Scale (SUS). Utilising a Delphi approach to incorporate stakeholder input, an evidence-informed and cohort specific program was established.&rft.creator=Cliffton Chan&rft.creator=Emre Ilhan&rft.creator=Leslie Nicholson&rft.creator=Min Tze Chew&rft.date=2024&rft_rights=CC-BY-NC-ND-4.0&rft_subject=Ehlers Danlos Syndrome&rft_subject=hypermobility joint&rft_subject=online intervention program&rft_subject=pain management&rft_subject=Pain&rft.type=dataset&rft.language=English Access the data
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Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are painful, chronic and multi-systemic conditions. No online pain management programs for hEDS/HSD currently exist. We aimed to develop one by exploring what people with hEDS/HSD want in such programs.

A Delphi was conducted via Recap and Lime Survey platforms of two stakeholder groups: participants with hEDS/HSD and healthcare professionals (HCP). Two rounds surveys were conducted. Using topics that reached consensus, the online program was developed. Usability testing was performed using the Systems Usability Scale (SUS). Utilising a Delphi approach to incorporate stakeholder input, an evidence-informed and cohort specific program was established.

Issued: 2024-05-07

Created: 2024-05-07

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Ehlers Danlos Syndrome | Pain | hypermobility joint | online intervention program | pain management |

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