Using an online survey, this project investigated, from the patients’ perspective, the experience of melanoma follow-up care in Australia,
Methods: Patients treated for primary melanoma after 1 January 2007 and who were diagnosed at least 12 months prior to survey date, were recruited across Australia through health professionals, cancer advocacy and research organisations and patient support groups. Data collection was June-September 2012.
In the context of follow-up, the survey explored provision of melanoma specific information to patients, intervals between visits to health professionals, and imaging tests received. Findings were compared with ACN/NHMRC guidelines for melanoma follow-up.
Results: Of 150 individuals accessing the survey, 64 participants were eligible and completed. Participants reported considerable variation in visits to health professionals from less than the recommended intervals through to duplication of care. Some participants reported test provision and test frequency outside ACN/NHMRC guidelines. One-third described the internet as their main source of information about melanoma and nearly two-thirds would have liked more information. Follow-up care was primarily provided by surgeons and dermatologists but nearly one-quarter saw 3 or more care providers. Nearly half reported inadequate psychosocial support. Having a care-coordinator, was selected as valuable, by 40 participants.
Conclusion: This study provides indications as to the nature of follow-up care for melanoma in Australia. Considerable variability and gaps in follow-up care were identified. The findings suggest that many patients feel that follow-up care provided does not meet their needs. Redirection of funding from expensive radiological tests (CT, PET) that are outside recommended guidelines, or duplicated specialist visits, into patient education, psychosocial support, and care coordinators may be useful measures to help meet the needs of melanoma survivors post-treatment.
Limitations: The study is small, only e-literate individuals could participate and, as a retrospective study, there is potential for recall bias.