Charles Sturt University
Perspectives and experiences of people with hypermobile Ehlers-Danlos syndrome and hypermobility related conditions in relation to functioning, disability and management
Invitation to participate in research
You have been invited to participate in an online survey exploring perspectives and experiences of people with Ehlers-Danlos syndrome (hypermobility subtype/type III) and hypermobility spectrum disorders (HSD).
The study is being conducted by researchers from the School of Community Health at Charles Sturt University. Before you decide whether or not you wish to participate in this study, it is important for you to understand why the research is being done and what it will involve. Please take the time to read the following information carefully and discuss it with others if you wish. You also can contact the principal researcher for more information.
The survey is approximately 45-60 minutes in duration, and will provide valuable insight into the challenges and opportunities people in Australia face with regard to their hypermobility. This may highlight current needs and priorities, and reveal any gaps in clinical services in Australia to assist in understanding the extent of difficulties people face in everyday functioning, disability and management.
Why have I been invited to participate in this study?
You are eligible to complete this survey if you meet the following selection criteria:
What is the purpose of this research?
This study aims to explore your perspectives and experiences of hEDS or HSD in terms of impact on functioning and disability, and different treatment and management approaches. The survey will ask you to describe your symptoms, activity and participation, and any factors that facilitate or impair your functioning. You also will be asked to describe different treatment and management approaches you have used or currently use, and to comment on your perceptions of their effectiveness and level of satisfaction.
This research will provide insight into the perceived impact of hEDS/HSD on functioning and disability and may assist in identifying treatment and management approaches that people with hEDS/HSD consider effective and valuable. Findings therefore may provide a nation-wide perspective of the perceived impact and burden of the hEDS/HSD in Australia, as well as inform treatment and management decision-making in clinical practice, and assist in design of research trials to explore and evaluate the efficacy of different interventions.
What does this study involve?
Once you have provided informed consent you will be able to access and complete the online survey. The survey will include multiple choice, multiple answer and short answer questions. Survey responses can be saved and resumed at a later time if needed.
You will have two options when completing the survey:
We recommend that you progress through the survey section by section and have breaks in between. If you do decide to have a break, please ensure you have finished the section of the survey you are on before you leave, then access the individual links to continue through the survey. This will prevent you having to re-type answers you have already completed. The survey will be open between February 2021 and approximately April 2021. You will be asked to complete the survey within 2 weeks of providing consent. No more than two reminders will be emailed to you to complete the survey if you haven’t completed the survey within this time period.
For optimal experience filling out this survey we also recommend using a laptop or desktop PC as questions may not appear correctly on certain mobile devices and use the internet browser Google Chrome if possible.
You have been invited to participate in an online survey exploring perspectives and experiences of people with Ehlers-Danlos syndrome (hypermobility subtype/type III) and hypermobility spectrum disorders (HSD).
The study is being conducted by researchers from the School of Community Health at Charles Sturt University. Before you decide whether or not you wish to participate in this study, it is important for you to understand why the research is being done and what it will involve. Please take the time to read the following information carefully and discuss it with others if you wish. You also can contact the principal researcher for more information.
The survey is approximately 45-60 minutes in duration, and will provide valuable insight into the challenges and opportunities people in Australia face with regard to their hypermobility. This may highlight current needs and priorities, and reveal any gaps in clinical services in Australia to assist in understanding the extent of difficulties people face in everyday functioning, disability and management.
Why have I been invited to participate in this study?
You are eligible to complete this survey if you meet the following selection criteria:
- You are between 18 and 65 years of age.
- You have been diagnosed by a medical practitioner as having Ehlers-Danlos Syndrome (hypermobility type/type III) or Hypermobility Spectrum Disorder.
- You have access to a computer or other device that can access the internet.
- You are proficient in reading, writing and comprehension in the English language.
What is the purpose of this research?
This study aims to explore your perspectives and experiences of hEDS or HSD in terms of impact on functioning and disability, and different treatment and management approaches. The survey will ask you to describe your symptoms, activity and participation, and any factors that facilitate or impair your functioning. You also will be asked to describe different treatment and management approaches you have used or currently use, and to comment on your perceptions of their effectiveness and level of satisfaction.
This research will provide insight into the perceived impact of hEDS/HSD on functioning and disability and may assist in identifying treatment and management approaches that people with hEDS/HSD consider effective and valuable. Findings therefore may provide a nation-wide perspective of the perceived impact and burden of the hEDS/HSD in Australia, as well as inform treatment and management decision-making in clinical practice, and assist in design of research trials to explore and evaluate the efficacy of different interventions.
What does this study involve?
Once you have provided informed consent you will be able to access and complete the online survey. The survey will include multiple choice, multiple answer and short answer questions. Survey responses can be saved and resumed at a later time if needed.
You will have two options when completing the survey:
- Complete the survey in one sitting by clicking on the first SurveyMonkey link provided. This will take approximately 45-60 minutes of your time to complete.
- Complete the survey in multiple sittings by clicking on the individual parts of the survey that will be emailed to you. Each section of the survey will take approximately 12-15 minutes of your time to complete.
We recommend that you progress through the survey section by section and have breaks in between. If you do decide to have a break, please ensure you have finished the section of the survey you are on before you leave, then access the individual links to continue through the survey. This will prevent you having to re-type answers you have already completed. The survey will be open between February 2021 and approximately April 2021. You will be asked to complete the survey within 2 weeks of providing consent. No more than two reminders will be emailed to you to complete the survey if you haven’t completed the survey within this time period.
For optimal experience filling out this survey we also recommend using a laptop or desktop PC as questions may not appear correctly on certain mobile devices and use the internet browser Google Chrome if possible.
Once you have reviewed the above information please proceed to Frequency Asked Questions.