part of the evaluation of the Queensland
Strategy for Chronic Disease 2005 - 2015
The Living with Diabetes study is a four-year follow-up study of quality of life and quality of care in diabetes mellitus.
The study has two broad aims:
Participants will be recruited through the National Diabetes Services Scheme (NDSS), which is an initiative of the Australian Government administered by Diabetes Australia. Recruitment packages will be sent to approximately 20,000 NDSS registrants. It is expected that around 7,000 registrants will volunteer for the study.
To be included in the study, participants must meet the following criteria:
Over half of the participants for the study will be recruited from three areas in Queensland: Innisfail, North Lakes, and Logan-Beaudesert. Some additional analysis will occur with survey data from these areas, allowing the research team to understand the way changes to services effect changes in quality of life and quality of care.
A survey will be sent to participants each year from 2008 to 2011. The study does not involve any physical examinations. The main topics covered in the survey are:
The study has been designed to allow the research team to monitor changes across time, compare changes between different parts of Queensland, and examine the way different factors influence each other (e.g. how does life stress effect a person’s ability to self-manage their illness).
The Living with Diabetes Study is a major new study that will examine the impact of diabetes mellitus on the lives of Queenslanders. This study is being conducted by the University of Queensland. The study is funded by Queensland Health under the Queensland Strategy for Chronic Disease 2005-2015.
The study will follow the progress of around 7,000 people with diabetes over the next four years. The study aims to understand the factors that influence the health and well-being of people living with diabetes mellitus, including disease and lifestyle factors, features of the health care system, and the environment. The study will also help understand the impacts of Queensland strategies to improve health services and the lives of people living with diabetes and other chronic diseases.
The study is being conducted by a research team at the University of Queensland’s School of Population Health. The team is lead by Dr. Maria Donald. Other members of the team include Professor Alan Lopez, Associate Professor Chris Bain, Dr. Robert Ware, Dr. Ruth Crowther, Dr. Ieva Ozelins, Ms. Michelle Naylor, and Ms. Amy Orlandi.
Most people who receive this package will be eligible to participate but there may be some people who are not. To participate, you must be:
If you are younger than 18 or have pregnancy-related diabetes (gestational diabetes) you will not be able to participate in this study and you should ignore this package. If you are unsure about your eligibility for the study, please call the research team on 1800 703 992.
If you choose to participate, you will be sent a survey similar to the one that is in this package each year for the next three years. Survey questions will cover a range of topics such as quality of life, satisfaction with health services, health service use, self-management, lifestyle factors (e.g. smoking, diet, physical activity), supports (e.g. social support), and emotional wellbeing. The survey should take around one hour to complete and can be completed over a number of sittings. Some questions may be of a personal nature. You are free to skip questions that you feel uncomfortable answering. If necessary, a family member or friend can help you complete the survey, provided the responses are your own.
Your name was randomly selected from the National Diabetes Services Scheme (NDSS) database, operated by Diabetes Australia. When you registered with the NDSS you indicated that you would like to be contacted when research opportunities arose.
To protect your privacy, Diabetes Australia has sent this study package to you on the University’s behalf. Your name will only be registered with the study if you return a completed survey package and consent form.
No. Participation is completely voluntary and you can withdraw from the study at any time without needing to provide a reason. Not participating will have no bearing on your registration with the NDSS or the health care you receive. If you do not wish to participate, just ignore this survey package.
If you would like to participate, you just need to complete the enclosed survey and return it to the University in the envelope provided. Your details will then be registered on the study database. Each year you will be sent a new survey to complete.
We also ask that you contact us and let us know if your contact details change so we can stay in touch.
Yes. Your contact details will be stored separately from your survey responses. Your survey responses will only be identifiable by a barcode and results will not be published in any way that could identify you.
Yes. This study has been cleared by one of the human ethics committees of the University of Queensland in accordance with the National Health and Medical Research Council's guidelines. If you would like to speak to an officer of the University not involved in the study, you may contact the Ethics Officer on 07 3365 3924.
If you are concerned about your general health or you are experiencing emotional distress, please consult your general practitioner or a 24-hour telephone advice service such as 13 HEALTH (13 43 25 84) or Lifeline Australia (13 11 14).
A dedicated free call telephone line has been set up for participants to obtain information and advice on the study. Project staff can be contacted during business hours on 1800 703 992.
Findings from the study will be distributed through this study website and through Diabetes Australia newsletters.
Each annual survey will contain similar sets of questions so we can monitor changes over time. The main topics covered in each survey are:
More detailed information about the survey instruments and types of questions can be found in the Survey Map.
This study has been cleared by one of the human ethics committees of the University of Queensland in accordance with the National Health and Medical Research Council's guidelines. If you would like to speak to an officer of the University not involved in the study, you may contact the Ethics Officer on 07 3365 3924.
