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The CHI Study* – Australian Research Centre in Sex, Health and Society (ARCSHS), La Trobe University, Melbourne.
Australian Research Centre in Sex, Health and Society Faculty of Health Sciences
215 Franklin Street, Melbourne Victoria VIC 3000 Australia
Ph: 0392855353
Fax: 0392855220
Welcome to The CHI Study
http://www.chistudy.org.au/
CHI (pronounced ‘kai’) is a national follow up study which will chart the impact of hepatitis C on the lives of people overtime – whether or not they seek treatment. The project aims to recruit three thousand or more people across Australia and will be web-based. When people are recruited to the study, they will complete a baseline questionnaire where they are asked about their health and wellbeing, their social and economic circumstances, and aspects of living with hepatitis C, including decisions about treatment and management and the impact of hepatitis C on health, work and family situations. Follow up, which will utilise an email reminder system that will be de-linked from the information participants provide, will generally occur at six-monthly intervals and more frequently where people are undergoing pivotal experiences (such as coming to terms with a recent diagnosis or undergoing treatment).
What follows, is a summary of the sort of information CHI will collect when people are recruited. Follow up questionnaires will be based largely on the information collected at baseline, but the questions will be focused on changes that may have occurred in the participant’s life since the last survey and will be more tailored to their reported circumstances (e.g. participants who remain untreated; who are currently on, or are scheduled, for treatment; who were more recently diagnosed or reinfected; or who had a poor treatment outcome).
There are aspects of the questions which we need to keep standard, so that we can compare the population of people with hepatitis C to that of other populations. This means that there are some questions which have to be asked, and asked in specific ways.
Data collection summary
Section A: Demographic information
This section asks about the participants’ background and life circumstances. Covered in this section is sex, age, Indigenous and immigration status, level of education and employment status. Financial and housing circumstances (including state of residence and postcode) are also included here.
Section B: General health status
This section includes the Short Form 12 (SF12), which is a standardised health status instrument which has been shown to be valid for measuring health in well and chronically ill populations. It is used by the health departments of many jurisdictions in Australia for routinely monitoring the health of the population. These data are regularly published, and so comparisons with our cohort will be possible. After the SF12, participants are asked about the presence and effect of any health affecting conditions they may have (apart from hepatitis C).
Section C: Hepatitis C infection and diagnosis
In this section, the questions are focused on hepatitis C specifically. The participants are asked about when and how they were diagnosed, and whether they were satisfied with the experience. We ask specifically about pre- and post test discussion, and those diagnosed more recently (in the previous three years) are asked to describe the impact of the diagnosis and how things could have been improved. All participants are asked about medical or community support services they may have been referred to at the time of diagnosis and whether they had accessed them in the first year after diagnosis. Participant perceptions of when and how they might have first become infected are also asked here. Then there are questions about tests and their results (ALT, PCR, genotype, biopsy and fibroscan), and the section concludes with the presence and frequency of possible extra-hepatic manifestations.
Section D: Treatment and management
Here participants are asked about their history and intentions about treatment. Participants who have already received treatment are asked about why they were treated, when and for how long they were on treatment, and what the outcome was (including if they didn’t complete treatment and why). The survey asks about treatment side effects, orthodox and complementary therapies they might have used to alleviate them, as well as their satisfaction level with these therapies. They are also asked how long the side effects persisted after they stopped taking the treatment.
People with no history of treatment are asked why they haven’t taken up treatment and how likely they think they are to consider treatment in the future. Both treated and untreated participants are asked about their use of complementary treatments in treating or managing their hepatitis more generally, how satisfied they were with their effects and who first told them about their use in this context.
Section E: Day to day living
This final section focuses on the day to day impact of chronic hepatitis C infection. Participants are asked about the place of hepatitis C in their lives, any impact it may have had on their physical ability to work or study and the consequences of this for their capacity to meet the daily costs of living. Patterns of health care and support service access are identified here and the impact of disclosure (both negative and positive) on family and friends, and within employment and health settings, are also explored in this section. Participants are asked about the impact of hepatitis C on their child-bearing decisions, and whether factors such as the serostatus of their partner have had any bearing on their experience of hepatitis C including their treatment decisions. Confidence in exposure management and individual strategies employed to minimise exposure risk are canvassed. Finally, participants are asked about any influence of hepatitis C on their use of alcohol and other drugs.
Note: Participants who indicate in Section D that they have cleared the virus after treatment, complete a similar Section E, but which has more focus on how life has been since clearing their infection.
Most hepatitis C research has focused on characterising the epidemiology and natural history of hepatitis C, and clinically evaluating management and treatment strategies. Broader social research, focusing on the social context and experiences of people with hepatitis C, has also been undertaken in discrete groups at particular points in time. While the medical and social literature on hepatitis C is extremely important and useful, neither the clinical or ‘snap shot’ social research approaches have been able to provide more than a partial understanding of what it means to live, grow and age with chronic hepatitis C.
What is CHI?
Most people with hepatitis C will grow old with the virus. Low mortality, low treatment uptake and limited (although improving) treatment success rates all contribute to the likelihood that someone with hepatitis C will live with the virus for many decades through many life stages and experiences. The CHI study will follow the same group of people (or ‘cohort’) with hepatitis C and document their experiences over time so that we can understand the place of hepatitis C in their lives.
Ultimately, the aims of CHI are to provide evidence based research to:
• challenge and change policy,
• improve services that people with hepatitis C access and rely on, and
• strengthen the voices of people living with hepatitis C
How will CHI work?
The CHI Study will be a primarily web-based study using the internet for data collection, and an automated email reminder system that will be delinked from any personal information.
We will spend the next few years recruiting up to three thousand people with hepatitis C and then follow them up over time. When people are recruited, we will ask about their health and wellbeing, their social and economic circumstances, and their experience of diagnosis and treatment (if relevant). Most people will be re-contacted at six-monthly intervals and asked about how life has changed over time. We will make more frequent contacts with participants who have been recently diagnosed or who are undergoing treatment to learn more about how people fare and what decisions they make while undergoing such pivotal life experiences.
Project Reference Group
We will be convening a project reference group in the near future to provide expert advice to the study. The membership of the group is yet to be established, but will include CHI project staff at ARCSHS and health and community workers offering a range of expertise in hepatitis C and the people most affected by it.
Recruiting
We will be inviting anyone 18 years old or older who has ever been told they have hepatitis C (and has the capacity to provide an informed consent) to participate in the study. Using a broad approach, we will advertise the study in the general media (such as newspapers, local council newsletters and GP surgeries) and also more specialised settings (such as liver and infectious diseases clinics, and drug and alcohol services). In particular, we wish to invite people who access specific hepatitis C related community services.
Timeline
Over the next few months we are engaging in a consultation process with all potential stakeholders to develop a shared vision of the processes and expectations for CHI. With an agreed recruitment strategy and a joint understanding of the methods and outcomes of the study, we hope to commence recruitment by mid-year 2010. The duration of recruitment will be contingent only on the interest of all players (participants and stakeholders) and the availability of funding. As well as seeking formal publication of findings, we will provide regular reports (interim and annual) to all interested parties throughout the study.
How can you help?
We are seeking your explicit support, and that of your organisation, for the project. Your participation in the consultation process is also requested, as is your cooperation in publicising the study among members and others with hepatitis C, as well as other relevant community stakeholders and consumer groups.
CHI - Chief Investigators
Dr Stephen McNally
Prof Marion Pitts
*Dr Emma Miller
Mr Jack Wallace
Prof Anthony Smith
Ms Jen Johnson
Australian Research Centre in Sex, Health and Society Faculty of Health Sciences
215 Franklin Street, Melbourne Victoria VIC 3000 Australia
Ph: 0392855353
Fax: 0392855220
First visit and review participant information.
Then to participate in study visit create new account.
When you have successfully created your account details will be provided about what to do next.
Welcome to The CHI Study
http://www.chistudy.org.au/
The CHI (Charting Health Impacts) Study is about the impact of hepatitis C on peoples’ lives. The study follows a group of people over time – looking at all the health and social aspects of life – so they can tell community organisations, doctors and governments what it is really like to live with hepatitis C.
Joining the study involves taking an anonymous online survey, which you can take your time completing. We then contact you in three to six months so you can tell us how things have changed for you.
If you have ever been told that you have hepatitis C (even if you have had treatment since then) and you are interested in participating in the study, or if you just want to find out more about the project and hepatitis C, you can access the Chi Study here.
Please be sure to let your experience count and let us know about how hepatitis C has affected you.
at http://www.chistudy.org.au.
http://www.hepccouncilsa.asn.au/compone ... -chi-study
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