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



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.


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.


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.


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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  1. Australian Institute of Health and Welfare, Cancer in Australia 2017. Cancer series no. 101.Cat. no. CAN 100. 2017. AIHW: Canberra

  2. Hamel, J.-F., et al. (2016). A systematic review examining factors influencing health related quality of life among melanoma cancer survivors. European Journal of Cancer,69, 189–198.

    PubMed  Article  Google Scholar 

  3. Beutel, M. E., et al. (2015). Depression, anxiety and quality of life in long-term survivors of malignant melanoma: A register-based cohort study. PLoS ONE,10(1), e0116440.

    PubMed  PubMed Central  Article  Google Scholar 

  4. Costa, D. S., et al. (2016). Psychometric properties of the Fear of Cancer Recurrence Inventory: An item response theory approach. Psychooncology,25(7), 832–838.

    PubMed  Article  Google Scholar 

  5. Kasparian, N. A., McLoone, J. K., & Butow, P. N. (2009). Psychological responses and coping strategies among patients with malignant melanoma: A systematic review of the literature. Archives of Dermatology,145(12), 1415–1427.

    PubMed  Article  Google Scholar 

  6. Glaser, A. W., et al. (2013). Patient-reported outcomes of cancer survivors in England 1–5 years after diagnosis: A cross-sectional survey. British Medical Journal Open,3(4), e002317.

    Google Scholar 

  7. Jefford, M., et al. (2017). Patient-reported outcomes in cancer survivors: A population-wide cross-sectional study. Supportive Care in Cancer,25, 3171–3179.

    PubMed  Article  Google Scholar 

  8. Social Research Centre, Dual-frame omnibus survey: Technical and methodological summary report. Internal report. 2012:

  9. EuroQoL Group. (2013). EQ-5D-5L user guide.

  10. Norman, R., Cronin, P., & Viney, R. (2013). A pilot discrete choice experiment to explore preferences for EQ-5D-5L health states. Applied Health Economics and Health Policy,11(3), 287–298.

    PubMed  Article  Google Scholar 

  11. Lumley, T., Survey: Analysis of complex survey samples. R package version 3.30. 2014.

  12. Winstanley, J. B., et al. (2015). Cross-cultural development of a quality-of-life measure for patients with melanoma: Phase 3 testing of an EORTC Melanoma Module. Melanoma Research,25(1), 47–58.

    PubMed  Article  Google Scholar 

  13. Winstanley, J. B., et al. (2013). What are the pertinent quality-of-life issues for melanoma cancer patients? Aiming for the development of a new module to accompany the EORTC core questionnaire. Melanoma Research,23(2), 167–174.

    PubMed  Article  Google Scholar 

  14. Kasparian, N. A., et al. (2016). "Melanoma: Questions and answers." Development and evaluation of a psycho-educational resource for people with a history of melanoma. Supportive Care in Cancer,24(12), 4849–4859.

    PubMed  Article  Google Scholar 

  15. Dieng, M., et al. (2016). Psychoeducational intervention to reduce fear of cancer recurrence in people at high risk of developing another primary melanoma: Results of a randomized controlled trial. Journal of Clinical Oncology,34(36), 4405–4414.

    PubMed  Article  Google Scholar 

  16. McLoone, J., et al. (2012). When the risks are high: Psychological adjustment among melanoma survivors at high risk of developing new primary disease. Qualitative Health Research,22(8), 1102–1113.

    PubMed  Article  Google Scholar 

  17. Vogel, R. I., et al. (2017). Comparison of quality of life among long-term melanoma survivors and non-melanoma controls: A cross-sectional study. Quality of Life Research,26(7), 1761–1766.

    PubMed  PubMed Central  Article  Google Scholar 

  18. Holterhues, C., et al. (2011). Impact of melanoma on patients' lives among 562 survivors: A Dutch population-based study. Archives of Dermatology,147(2), 177–185.

    PubMed  Article  Google Scholar 

  19. Branstrom, R., et al. (2010). Predictors of sun protection behaviors and severe sunburn in an international online study. Cancer Epidemiology, Biomarkers & Prevention,19(9), 2199–2210.

    Article  Google Scholar 

  20. Lacey, K., et al. (2016). Presentations to general practice before a cancer diagnosis in Victoria: A cross-sectional survey. Medical Journal of Australia,205(2), 66–71.

    PubMed  Article  Google Scholar 

  21. Carey, M., et al. (2012). How well are we meeting haematological cancer survivors' preferences for involvement in treatment decision making? Patient Education and Counseling,88(1), 87–92.

    PubMed  Article  Google Scholar 

  22. Watson, E. K., et al. (2012). Personalised cancer follow-up: Risk stratification, needs assessment or both? British Journal of Cancer,106(1), 1–5.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

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This study was funded by the Victorian Comprehensive Cancer Centre.

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Correspondence to Karolina Lisy.

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The authors declare that they have no conflicts of interest.

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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.

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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).

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  • Survivorship
  • Melanoma
  • Patient-reported outcomes
  • Quality of life