None listed
Conditions
Brief summary
The HOPE program is an new online pain management program for people with hypermobile Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder. This aim of this study is to assess its feasibility, acceptability and effectiveness. We will be comparing the intervention group to a treatment-as-usual group. Outcomes will include online surveys asking about the program's feasibility and acceptability, and interviews with participants in the HOPE program on their experience with it.
Interventions
Online pain management program for hEDS or HSD (HOPE program). The content in this program were developed based on a previous modified Delphi study of participants with the conditions and healthcare professionals who have experience treating the conditions. We are in the process of preparing as a manuscript for submission and it has not been published, we are therefore unable to provide a reference. The HOPE program is an online, 12 modules, 30-45 minutes each module, 2 modules/week program. Par
Online pain management program for hEDS or HSD (HOPE program). The content in this program were developed based on a previous modified Delphi study of participants with the conditions and healthcare professionals who have experience treating the conditions. We are in the process of preparing as a manuscript for submission and it has not been published, we are therefore unable to provide a reference. The HOPE program is an online, 12 modules, 30-45 minutes each module, 2 modules/week program. Participants read through word content including topics like pain neuroscience education, medical and conservative pain management strategies, and lifestyle and behavioural suggestions. There are images and some downloadable pdf files to supplement the word content. Most modules have reflective questions that participants can choose to answer that prompts them reflect on their own pain experiences and to create their own pain action plans. Participants will have access to the program for 8 weeks (2 weeks extra in case they need it, for example due to unexpected health problems). They will be given a login name and password. Participants can access the program at their own time (self-paced) and in their location of choice over 8 weeks. They will also be allowed to continue treatment-as-usual for their pain. After 8 weeks, their access to the program will be discontinued.
Sponsors
Macquarie University
Study design
Allocation
Randomised controlled trial
Intervention model
Parallel
Primary purpose
Treatment
Masking
Blinded (masking used) (Investigator)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
• Adults aged 18 and over • Australian residents • Diagnosed with hEDS or HSD or Joint Hypermobility Syndrome (JHS) or Ehlers-Danlos Syndrome – Hypermobility Type (EDS-HT) by a medical doctor (e.g. rheumatologist, geneticist, general practitioner) • Presence of pain for more than 3 months • Sufficient English proficiency to engage with program and interview • Have access to a desktop/laptop and internet over the course of the program • Stable dosage and type of pain medication in the last 3 months • Stable medical or allied health interventions for pain (such as Physiotherapy, Psychology) in the last 3 months
Exclusion criteria
• Severe depression (Patient Health Questionnaire (PHQ-9) score >=20) • Significant suicidal ideation (PHQ-9 score >2 on item 9) • Co-existing medical conditions causing pain not known to be associated with hEDS/HSD such as active cancer, active inflammatory joint conditions
Outcome results
None listed