Over the past 18 months, we have had the privilege of interviewing dozens of melanoma patients as well as their family members. In conducting these interviews, we were hoping to find out how to best support patients diagnosed with melanoma and the important people in their lives. As a part of these interviews, many patients shared their melanoma journey, from the confusing and confronting time of their diagnosis, throughout their various treatments, and life after treatment.
Anxiety, worry, and fear were topics commonly raised by patients when sharing their melanoma journey. What surprised us, however, was the proportion of patients who continued feeling this anxiety years after receiving the news that they were melanoma-free.
When consulting the available evidence, it became clear that this anxiety is rather common. The recently published State of the Nation – A Report into Melanoma, which surveyed 1,137 melanoma patients across Australia, found that 40% of melanoma patients experience anxiety . Furthermore, evidence from Melanoma Institute Australia demonstrates that in early-stage (O-II) melanoma patients specifically, 63% experience this anxiety to a degree that requires additional support .
Upon becoming familiar with the available evidence, it became clear that the supportive care of melanoma patients is often neglected. For example, in the aforementioned State of the Nation – A Report into Melanoma , 40% of melanoma patients reported that supportive care was never discussed with them throughout their diagnosis and treatment.
As a substantial number of melanoma patients experience this anxiety, worry, or fear of melanoma recurrence or progression, and it appears to continue in the years after remission, it begs the question: What can be done to better support these patients and address their anxiety?
Based on this question, our Supportive Care team at Melanoma Institute Australia has created a new research study aiming to provide additional support to early stage melanoma patients experiencing this anxiety.
This study is called the Melanoma Psychological Support Study.
What is the purpose of the study?
The primary purpose of this study is to test whether we can use a simple survey to identify patients diagnosed with early-stage melanoma who may be experiencing elevated anxiety, worry or fear that melanoma may come back or get worse. This survey is only nine questions long and takes less than five minutes to complete.
What additional support is provided to patients?
For patients identified to experience elevated fears that melanoma may come back, they will be offered two purpose-designed supports:
- The ‘Melanoma: Questions and Answers’ booklet, providing written information that may help ease some anxiety.
- Telehealth sessions with a trained psychologist, whose goal is to provide patients with effective strategies and support to address fears of melanoma coming back.
Who is this study for?
Any early-stage melanoma patient is eligible to be a part of this study if they are currently seeing a clinician at either Melanoma Dermatology (Suite 8) at the Poche Centre, or at Sydney Melanoma Diagnostic Centre at Royal Prince Alfred Hospital.
Patients are notified about the study by an automatic text message sent by the clinic about one month before an upcoming appointment, as well as through discussions with their clinician.
If you are an adult early-stage melanoma patient who has not had a previous diagnosis of late-stage (III-IV) melanoma and are interested in participating, make sure to ask your clinician at your next Melanoma Dermatology at the Poche Centre or Sydney Melanoma Diagnostic Centre appointment.
How can I see the results of the study?
The results of the study will be published here, on the Melanoma Institute Australia website, when the study is complete. These results will include how effective these additional supports were in reducing anxiety, worry, and fear that melanoma may come back, as well as anonymous feedback from patients about their experiences with these additional supports.
What about late-stage melanoma patients?
Late-stage melanoma patients have different experiences than early-stage patients. As this study was tailored to address the needs of early-stage patients, the needs of late-stage patients will likely not be adequately addressed through this current study.
However, the investigative team are currently seeking funding to create a similar support trial for late-stage patients.
Who can I ask if I have questions about the study?
If you have any questions about the study, please feel free to reach out the Supportive Care team at Melanoma Institute Australia using the details below.
Phone: (02) 9911 7294
If you are a fellow melanoma or cancer researcher, the study protocol has been recently published in an open-access journal .
It’s important to remember that a diagnosis of melanoma affects each individual in a unique way. If you desire additional support, please speak to your general practitioner or melanoma specialist who can facilitate the appropriate support to address your needs.
1 – State of the Nation: A Report into Melanoma 2022
2 – Bell KJL, Mehta Y, Turner RM, et al. Fear of new or recurrent melanoma after treatment for localised melanoma. Psychooncology 2017;26:1784–91.
3 – Thompson JR, Smith AL, Lo SN, et al. Protocol for the implementation of a stepped-care model to address fear of cancer recurrence in patients previously diagnosed with early-stage (O–II) melanoma. BMJ Open 2022;12:e054337.