Navigating HOPE (Hypermobile Online Pain managemEnt): Perspectives and Experiences From People With Hypermobile Ehlers–Danlos Syndrome or Hypermobility Spectrum Disorder on a Condition‐Specific Online Pain Management Programme
A large community of hEDS/HSD patients' and healthcare providers' input were obtained from a two-staged online Delphi from a prior study. This approach was preferred to capture the greatest amount of feedback from a diverse international voice. Via the Delphi study, they provided suggestions for content topics and consensus on what they felt were important to include in a hEDS/HSD specific online pain management programme, as well as programme parameters (e.g., duration and frequency of programme; healthcare provider telehealth component; types of learning activities).
Authors
- Sarah Dennis (ORCID: https://orcid.org/0000-0003-2685-9246)
- Cliffton Chan
- Sarah Kobayashi (ORCID: https://orcid.org/0000-0001-7816-2198)
- Min Tze Chew (ORCID: https://orcid.org/0000-0003-3197-1064)
- Leslie L. Nicholson (ORCID: https://orcid.org/0000-0001-9178-2535)
- Emre İlhan (ORCID: https://orcid.org/0000-0002-4075-0733)
Institutions
- The University of Sydney (AU)
- Ingham Institute (AU)
- Macquarie University (AU)
Publication Details
- Journal
- Health Expectations
- Published
- 2025-02-01
- DOI
- https://doi.org/10.1111/hex.70186
- Primary Topic
- Connective tissue disorders research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Australian Government
- Macquarie University