Understanding Factors Associated with the Well-Being and Quality of Life of Adults with Mast Cell Disorder
Link to participate – study ends Oct 30
Why is the survey being conducted?
Mast Cell Disorder is an increasingly widespread group of incurable chronic diseases characterised by a range of unpredictable and spontaneous symptoms, a high treatment burden, and long diagnosis lead-times. The purpose of this survey is to explore the factors associated with the well-being and quality of life of adults with Mast Cell Disorder. Results will also be used to inform the development of a wellbeing intervention for people with Mast Cell Disorder.
What does the survey involve?
You are asked to do an online survey which will take 30-45 minutes. This will ask questions about you (your gender, age, ethnicity), your condition (type of Mast Cell Disorder, symptoms, current treatment), your support network, your healthcare experiences, and also your feelings, perceptions and views about living with Mast Cell Disorder. You can also save the survey at any point and return later – the survey will automatically give you a return code.
Who can participate in this survey?
This survey is open to adults (aged 18 years or older) living with Mast Cell Disorder. Participants need to read and write in English.
Your consent
Completion and submission of the survey online implies your formal consent to take part in the research. It also permits your responses, including any written comments, to be used anonymously in research outputs.
Benefits and risks to you
By taking part in the survey, you can share your experiences of Mast Cell Disorder, which will help raise awareness of the effects that the condition might have on the daily lives of others with the condition. This information will be used to inform a new wellbeing intervention for people with Mast Cell Disorder. If you agree, you will have an opportunity to go into a draw to win one of 10 AUD$50 Amazon gift cards (or equivalent based on your location) as a thank you for participating in this survey. You will also have an opportunity to be invited to participate in future related research, including a wellbeing intervention.
You will be asked to give up some of your time to participate in the survey, which may be up to 45 minutes. Anticipated risks are negligible. As you will be completing the questionnaire from your own home, you will be in your own safe environment. It may be that some of the questions prompt you to think or feel more about your wellbeing. If you like to seek support for this, you can connect with your health professional and/or contact support organisations like the following in your home country (see study landing page).
How will we use any personal information?
We will summarise information across respondents so that we can describe the range of people who responded to the survey and explore commonalities.
If you choose to go into the prize draw, we will request your contact details (e-mail address) to enable us to notify the winners after the draw of the participation prizes. We will delete this information after the draw.
If you express interest in being contacted about future research or the wellbeing intervention, we will also request your contact details (e-mail address).
In both these instances, your email address will be stored separately from your survey responses, so that you cannot be linked in any way to your survey responses and cannot be identified by third parties.
No email addresses will be reported in any research publications or outputs arising from the study.
How will this personal information be stored?
All data will be entered into an electronic database that will be kept in a secure Griffith University research data drive. All data will be retained for five-years from the end of the project or, if later, the date of the last publication. It will then be deleted.
Privacy statement
Information collected from this study is confidential and anonymous. Information will not include your name. Any personal information collected is confidential and will not be disclosed to third parties without your consent, except to meet government, legal or other regulatory authority requirements. An anonymised copy of this data may be used for other research purposes. For further information consult the University’s Privacy Plan at http://www.griffith.edu.au/aboutgriffith/plans-publications/griffith-university-privacy-plan or telephone 07 3735 4375.
Your participation is voluntary
Completion of this survey is entirely voluntary. You are free to stop or withdraw from the survey at any time, without penalty. Whether or not you choose to participate in this study will have no impact on your current or future relationship with your support entity or Griffith University or any other organisation.
The ethical conduct of this research
Griffith University conducts research in accordance with the National Statement on Ethical Conduct in Human Research. If you have any concerns or complaints about the ethical conduct of this research project, please contact: The Manager, Research Ethics, Office for Research, Bray Centre, Nathan Campus, Griffith University (Tel: +61 07 3735 4375 or researchethics@griffith.edu.au).
Distribution of results
Individual results will not be provided at any point. Results will also be written up in the PhD in Clinical Psychology thesis of Kylie Veale Sotheren. Results may also be written up for publication in scientific publications/journals, and presented in relevant forums e.g., conferences.
Feedback to you
We will produce a 1-2-page summary of the findings, which will be sent to your support group or member society/organisation. We will also post this summary to the MCD and Quality of Life page on Facebook at https://www.facebook.com/MCDandQoL. Alternatively, you are free to contact the research team to receive a summary of the findings and can do so without explanation for your request. Winners of the prize draw will be directly notified by email. Notification of the prize draw and winner locations will be published on the study webpage (https://www.facebook.com/MCDandQoL).
Questions / further information
For further information, or if you have any questions, please contact:
Kylie Veale Sotheren, Investigator, kylie.vealesotheren@griffithuni.edu.au
Link to participate – study ends Oct 30