This survey is now closed.
Thank you to all those people with diabetes who generously volunteered their time to complete the survey.
What is the yourSAY (Self-management And You): Quality of Life study?
YourSAY is a series of online surveys about what it’s like to manage and live with diabetes. Each survey has a different self-management focus.
YourSAY: Quality of Life investigates the impact of living with diabetes among adults with type 1 or type 2 diabetes living in Australia or the United Kingdom (UK). Currently, there are many questionnaires available and, at face value, they appear quite similar. So, it can be hard for health professionals and researchers to decide which to use. We want to be able to make recommendations about which questionnaires are the most useful, relevant and most acceptable to people living with diabetes. So, we have put several similar questionnaires into this study – all designed to measure the impact of diabetes on quality of life – and are asking people with diabetes to complete them and tell us what they like or don’t like about each one. The results of this study will help us to: 1) better understand the impact of diabetes and its management on people’s quality of life, and 2) help us to recommend the best questionnaires for use in future studies
How can I take part?
YourSAY: Quality of Life is an online survey which will take approximately 45-60 minutes. You can complete the survey on any computer or mobile device. Before you decide if you would like to take part, it is important for you to understand why the research is being done and what it will involve. A copy of the Plain Language Statement is provided below.
Plain Language Statement
Who is conducting the survey?
The “Your SAY: Quality of Life” study is being conducted by researchers at:
- The Australian Centre for Behavioural Research in Diabetes (ACBRD), a partnership for better health between Diabetes Victoria and Deakin University, Melbourne Australia (Prof Jane Speight and Dr Elizabeth Holmes-Truscott)
- The University of Surrey, Guildford, UK (Dr Debbie Cooke)
- The University of Sheffield, UK (Prof Simon Heller and Dr Lizzie Coates)
Professor Jane Speight is the principal investigator and takes responsibilities for this study (e: email@example.com, t: +61 (0)3 8648 1850). Professor Simon Heller is the Chief Investigator in the UK (firstname.lastname@example.org).
Who can take part?
To take part in this study you must be an adult (between the ages of 18 and 75) , live in Australia or the UK, have type 1 or type 2 diabetes, and be able to read and write English without assistance.
What does the study involve?
Taking part in this study involves completion of the “Your SAY: Quality of Life” online survey. We expect this to take approximately 45 - 60 minutes. You can complete the survey using a computer, tablet, or smartphone.
This study is running until October 31st after which time it will not be possible to access the online survey.
The study invites you to ‘have your say’ and reflect on how your diabetes affects your quality of life. Some of the questions will seem like they are the same as others and this is deliberate. It is because we are comparing several questionnaires that are trying to measure the same issues. You will be asked to complete the questionnaires and at the end of each one provide a rating of what it was like to complete each one.
Completion of the survey confirms that you have read this Plain Language Statement and agree to take part in this study. The Plain Language Statement form is for you to print and keep.
Can I withdraw at any time?
You do not have to take part in this study. If you do take part, you are free to stop completing the survey at any time without giving a reason. However, your survey responses up until that point will be saved and we will be unable to withdraw your data. This is because we do not collect any of your personal or identifying information so will not be able to identify and remove your data. Choosing not to take part will not affect your relationship with the organisations running this research, that is ACBRD, Deakin University, Diabetes Victoria, the University of Surrey, Sheffield Teaching Hospitals NHS Foundation Trust or the University of Sheffield.
Are there any benefits for me personally?
There are no specific benefits to you but people take part in surveys like this for many reasons:
1) Some people find the questions interesting. Taking part offers an opportunity to think about diabetes, your health and how these affect your quality of life.
2) Others just want to take part in research that will help us to understand more about how diabetes affects people’s lives and how to help other people with diabetes.
Are there any risks to me?
There are no foreseeable risks associated with you taking part in this study. There will be no medical or blood tests involved in the study. You will only be asked to answer questions on your computer, tablet or smartphone.
If completing this survey raises any concerns for you about your diabetes and its management you may wish to discuss these with your doctor. You may also contact your local diabetes organisation helpline.
If you live in Australia, please contact the Diabetes Australia helpline: 1300 136 588, Monday to Friday, 8:30am to 5pm, or on Saturdays from 9am to 12pm.
If you live in the UK, please contact the Diabetes UK helpline: 0345 123 2399 or email: email@example.com, Monday to Friday, 9am–7pm or 0141 212 8710, email: firstname.lastname@example.org if you live in Scotland.
Does the survey ask for my contact or personal details?
You do not need to provide your contact details for this study. All the data you provide is anonymous so no-one can identify you from your answers to the questions. Some questions may seem personal, e.g. your age, your income. These are included to help us describe the people who took part. We will only refer to average age, income etc. Your personal information will not be used to identify you.
What will happen to my information?
This survey is hosted online via Deakin University (Australia), using Qualtrics (online survey software). All survey responses will be kept in a password-protected file held within the Deakin University network. After data collection is complete, survey data will be stored in secure Deakin University computer files accessible only by the ACBRD research team. A copy of the data may be shared with research team members at the University of Surrey and University of Sheffield and, if so, the data will be stored on password-protected university computers. In accordance with Australian government requirements, all data and surveys are kept for a minimum of six years after the completion of the “Your SAY: Quality of Life” study and then disposed of by erasing of electronic files.
Your responses will be analysed along with those from other people taking part in the “Your Say: Quality of Life” study. No-one can identify you from your answers to the questions that we are asking.
The overall results of the “Your SAY: Quality of Life” study will be published in a study report, in academic journals, at conferences, and in diabetes magazines and newsletters. No-one will be able to identify you from any of the information we publish or present.
Has this study been approved by an Ethics Committee?
Yes. Approval to carry out this study has been given by the Human Research Ethics Committee of Deakin University (reference: HEAD-H 03_2017) in Australia. In the UK, this study has been reviewed and given approval by the Yorkshire & The Humber - Bradford Leeds Research Ethics Committee (17/YH/0234) and the Health Research Authority (IRAS ID: 228898).
Who can I contact about this study?
If you have any complaints about any aspect of the project, the way it is being conducted, or any questions about your rights as a research participant, then you can contact the relevant research office.
If you live in Australia, please contact: The Manager, Office of Research Integrity, Deakin University, 221 Burwood Highway, Burwood Victoria 3125, Telephone: +61 (0)3 9251 7129, Email: email@example.com.
If you live in the UK, please contact: The Manager, Research Integrity and Governance Office (RIGO), University of Surrey, Senate House, Guildford, Surrey, GU2 7XH, Telephone: +44 (0) 1483 68 9103 / 2051, Email: firstname.lastname@example.org
If you live in Australia and would like further information or have any questions about the study, please contact the ACBRD (Telephone: +61 (0)3 8648 1845, Email: email@example.com).
If you live in the UK and would like further information or have any questions about the study, please contact Dr Lizzie Coates (Telephone: 0114 222 0886, Email: firstname.lastname@example.org).