How you can make a difference by participating in Supportive Care Research, and the different forms it can take.
What is Supportive Care Research?
Supportive care is commonly defined as: “the prevention and management of the adverse events of cancer and its treatment. This includes management of physical and psychological symptoms and side effects across the continuum of the cancer experience from diagnosis through treatment to post-treatment care” .
When Melanoma Institute Australia conducts a research study with a supportive care focus, we are interested to learn new ways to help people with a melanoma diagnosis cope and improve their quality of life. These studies could be on a range of topics and conducted in several ways, for example a trial to investigate the side effects of a new immunotherapy treatment, providing educational resources and professional counselling to patients experiencing anxiety, or surveying patients to directly learn about what they may need to support them better.
What Are the Different Types of Supportive Care Research We Conduct?
There are several different types of supportive care research studies that are conducted regularly at Melanoma Institute Australia. As patients are often asked to be a part of these research studies, it’s important to know what each study design usually involves. Below is a brief outline of the most common designs used in our research.
Cross-sectional studies are used to provide a snapshot of the participants at a single point in time. In these studies, participants are often asked to complete a one-time survey or an interview to learn about common experiences or opinions patients may have.
Example: To improve our services at MIA, researchers may ask 200 melanoma patients to complete a one-time survey to learn about what aspects of their quality of life can be better supported.
Cohort studies typically involve at-least one group of participants that share a characteristic of interest (called a ‘cohort’) being followed over an extended period of time to investigate how many participants develop a specific outcome.
Example: To investigate if gender is associated with psychologist referrals after a melanoma diagnosis, researchers may recruit a cohort of 100 male and 100 female melanoma patients and contact them every 6 months for a few years to see how many were referred to a psychology service.
In a clinical trial, researchers would like to find out whether a particular intervention makes a difference to a patient’s quality of life, coping, or psychological well-being. In a randomised-controlled trial, the gold standard in research, patients are randomly assigned to the intervention or control (e.g., treatment as usual) groups. Both groups are then followed over time to see whether patients in the intervention group fare better than those in the control group. This would demonstrate that the intervention is helpful.
Example: To investigate whether group therapy is better at addressing anxiety than individual therapy, researchers may randomly assign 50 patients to receive group therapy and 50 patients to receive individual therapy. Researchers can then compare the anxiety of patients in both groups over time to see whether the group therapy was better, worse, or equal to individual therapy.
How does participating in a research study result in change?
By participating in a research study, you are often dedicating your time and effort to help us improve the care of future patients. Thus, it is important to us that you feel the time and effort you spent was worthwhile and resulted in a positive change. By taking part in a research study, you are often agreeing to provide our researchers with the primary tool we need to implement these changes – data.
Data allows us to measure what changes need to be made, how best to make them, and what the results of these changes will likely be. This data allows us to conduct our analyses and communicate with the appropriate audiences to create change. This can include:
- Communicating with academic audiences both nationally and internationally to help understand the problem we are trying to solve and help guide future solutions.
- Communicating with clinicians to help improve their clinical practice and services in addressing the problem.
- Communicating with organisations to lead to organisational change and shifts is organisational culture to eliminate the problem.
- Communicating to the state and federal governments to seek more funding, support, and service development to address the problem.
It is the data you generously provide when participating in a research study that allows our researchers to create change and improve the standard of melanoma care, as we move towards our goal of zero deaths from melanoma.
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