Karolina Lisy1,2,3, Julia Lai-Kwon4, Andrew Ward5, Shahneen Sandhu6, Nadine A Kasparian7,8, Julie Winstanley9, Frances Boyle9, David Gyorki10,11, Karen Lacey12, Jim Bishop12, Michael Jefford13,4,14. 1. Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, 305 Grattan Street, Melbourne, VIC, 3000, Australia. karolina.lisy@petermac.org. 2. Australian Cancer Survivorship Centre, a Richard Pratt Legacy, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia. karolina.lisy@petermac.org. 3. Sir Peter MacCallum Department of Oncology, The University of Melbourne, Parkville, VIC, Australia. karolina.lisy@petermac.org. 4. Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia. 5. The Social Research Centre, Melbourne, VIC, Australia. 6. Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, 305 Grattan Street, Melbourne, VIC, 3000, Australia. 7. 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. 8. Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA. 9. Patricia Ritchie Centre for Cancer Care and Research, The Mater Hospital, University of Sydney, Sydney, NSW, Australia. 10. Department of Surgical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia. 11. Department of Surgery, The University of Melbourne, Parkville, VIC, Australia. 12. Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia. 13. Australian Cancer Survivorship Centre, a Richard Pratt Legacy, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia. 14. Sir Peter MacCallum Department of Oncology, The University of Melbourne, Parkville, VIC, Australia.
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.
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.
Entities:
Keywords:
Melanoma; Patient-reported outcomes; Quality of life; Survivorship