The Supportive Care Needs Study: results and next steps

What was the Supportive Care Needs Study?

Due to the ongoing advances in melanoma diagnosis and treatment pioneered by Melanoma Institute Australia (MIA), more Australians are living with a previous diagnosis of melanoma than ever before. As a result, the supportive care of people diagnosed with melanoma and their caregivers has become increasingly important, as it’s well known that diagnosis and treatment for melanoma can have a substantial impact on physical and emotional well-being. MIA has committed to addressing the unmet needs of people diagnosed with melanoma and caregivers through implementing supportive care services into routine clinical care; however, to address these unmet needs, they must first be identified.

This was the goal of the Supportive Care Needs Study – to investigate and identify the unmet needs, well-being, and desired services of people diagnosed with melanoma and caregivers.

How was the Supportive Care Needs Study Conducted?

Throughout late 2020 to early 2022, many people diagnosed with melanoma and their friends and family who attended the surgical and dermatology clinics at MIA were invited to complete a one-time survey regarding their supportive care and unmet needs. An open invitation to participate in this study was also shared through the MIA and Melanoma Patients Australia emailing list and Facebook group. After completing the survey, participants were also offered the opportunity to participate in an interview to further discuss how melanoma diagnosis and treatment has impacted their life and well-being.

What Were the Results of the Study?

When recruitment for this study closed, a total of 56 early-stage (stage 0-II) patients, 100 advanced-stage (stage III-IV) patients, and 37 caregivers completed the survey. Furthermore, a total of 14 early-stage patients, 28 advanced-stage patients, and 8 caregivers opted to participate in the interview.

After analysing the survey data, we found that very few participants reported clinical levels of anxiety, stress, or depression that may warrant a diagnosis. However, we found that a majority of early- and advanced-stage patients reported fear of melanoma coming back or progressing. This is important as MIA has recently concluded a trial offering support to address this fear in early-stage patients – read more about this study here, with the funds raised from Melanoma March 2023 going toward extending this support to advanced-stage patients.

Regarding the unmet needs reported by participants, the top 3 for each group were:

• Early-stage patients:
  1. Fears about melanoma spreading
  2. Anxiety
  3. Uncertainty about the future

• Advanced-stage patients:
  1. Fears about melanoma spreading
  2. Uncertainty about the future
  3. Concerns about the worries of those close to you

• Caregivers:
  1. Getting emotional support for yourself
  2. Looking after your own health
  3. Fears about the physical and mental health of their person diagnosed with melanoma

Based on these commonly reported unmet needs, it was no surprise that the most requested service that these participants desired was access to a psychologist. This is another important finding, as in 2021 MIA began its clinical psychology service for patients and caregivers, which has hopefully been the first successful step in addressing the above unmet needs.

The second most requested service was access to a cancer nurse. Access to melanoma nurses will likely be addressed in the coming years due to the Australian Federal Government’s promise of creating a Melanoma Nurse Program, which will fund 35 full-time specialist melanoma nurses by 2025-2026.

Lastly, many participants also desired access to a support group comprised of similar individuals to discuss and share their experiences. Support groups and peer-to-peer support programs are available in Australia to those diagnosed with melanoma and their caregivers, such as those provided in partnership with Melanoma Patients Australia – see Patient Support Groups.

What Are the Next Steps?

The results of this study have been illuminating for MIA, providing guidance for the Supportive Care and Survivorship Team in designing future studies and services to further address the needs of melanoma patients and caregivers.

Some of the next steps the Supportive Care and Survivorship Team plan on taking are:

1. Publishing these study results to guide other melanoma support services both nationally and internationally.
2. Further expanding MIA’s clinical psychology service.
3. Designing and trialling an Australian-first support service tailored to addressing fear of melanoma recurrence or progression in advanced-stage patients. This is the trial that funds raised during Melanoma March 2023 will support.
4. Trialling group therapy sessions for MIA’s psychology service.

Thank you to all the patients and carers who made a difference to the future of supportive care for cancer patients by participating in this vital study.