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Patient-reported outcomes in melanoma survivors at 1, 3 and 5 years post-diagnosis: a population-based cross-sectional study

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Abstract

Purpose

There is a lack of population-based data describing patient reported outcomes (PROs) in melanoma survivors which could guide the development of interventions and resources. This study assessed overall quality of life (QoL), self-reported symptoms and unmet information needs in melanoma survivors 1, 3 or 5 years post-diagnosis.

Methods

A cross-sectional postal survey was conducted in Victoria, Australia, with eligible melanoma survivors identified from a population-based cancer registry. Patient-reported outcome measures included the EuroQoL 5-Dimension 5-Level (EQ-5D-5L), and self-reported symptoms, difficulties and information needs. Associations between demographic, disease and care-related factors and QoL were also assessed.

Results

A total of 476 melanoma survivors participated in the study (response rate 46.5%). Anxiety and depressive symptoms were more prevalent in survivors compared to the general population (30.7% vs 21.6%; p < 0.01). Fear of cancer recurrence (48.3%) and fear of cancer spreading (37.8%) were the most commonly reported symptom items, and approximately one in five melanoma survivors had unmet information needs related to psychological aspects of living with melanoma. Recurrent melanoma, living in a nursing home, chronic comorbidities, and melanoma diagnosed at > 2 mm thickness were associated with lower QoL.

Conclusion

A large proportion of melanoma survivors reported ongoing quality of life deficits, fear of cancer recurrence, as well as unmet information needs up to 5 years after diagnosis. Patients may benefit from tailored informational resources and interventions that address the psychological aspects of living with and beyond melanoma.

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Funding

This study was funded by the Victorian Comprehensive Cancer Centre.

Author information

Author notes

  1. Karolina Lisy and Julia Lai-Kwon are joint first authors.

Authors and Affiliations

  1. Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, 305 Grattan Street, Melbourne, VIC, 3000, Australia

    Karolina Lisy & Shahneen Sandhu

  2. Australian Cancer Survivorship Centre, a Richard Pratt Legacy, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Karolina Lisy & Michael Jefford

  3. Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Julia Lai-Kwon & Michael Jefford

  4. The Social Research Centre, Melbourne, VIC, Australia

    Andrew Ward

  5. Cincinnati Children’s Center for Heart Disease and the Developing Mind, Heart Institute and the Division of Behavioral Medicine & Clinical Psychology, Cincinnati Children’s Hospital, Cincinnati, OH, USA

    Nadine A. Kasparian

  6. Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA

    Nadine A. Kasparian

  7. Patricia Ritchie Centre for Cancer Care and Research, The Mater Hospital, University of Sydney, Sydney, NSW, Australia

    Julie Winstanley & Frances Boyle

  8. Department of Surgical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    David Gyorki

  9. Department of Surgery, The University of Melbourne, Parkville, VIC, Australia

    David Gyorki

  10. Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia

    Karen Lacey & Jim Bishop

  11. Sir Peter MacCallum Department of Oncology, The University of Melbourne, Parkville, VIC, Australia

    Karolina Lisy & Michael Jefford

Authors
  1. Karolina Lisy
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  2. Julia Lai-Kwon
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  3. Andrew Ward
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  4. Shahneen Sandhu
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  5. Nadine A. Kasparian
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  6. Julie Winstanley
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  7. Frances Boyle
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  8. David Gyorki
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  9. Karen Lacey
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  10. Jim Bishop
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  11. Michael Jefford
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Corresponding author

Correspondence to Karolina Lisy.

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Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical approval

Ethics approval was granted by the Cancer Council Victoria Human Research Ethics Committee (Project No: HREC 1307). All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

All participants included in the study were provided with details regarding the study and informed that return of the completed study implied their consent to participate in the study.

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Lisy, K., Lai-Kwon, J., Ward, A. et al. Patient-reported outcomes in melanoma survivors at 1, 3 and 5 years post-diagnosis: a population-based cross-sectional study. Qual Life Res 29, 2021–2027 (2020). https://doi.org/10.1007/s11136-020-02464-y

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  • DOI: https://doi.org/10.1007/s11136-020-02464-y

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