Aims: Meeting the needs of the large and growing population of cancer survivors requires innovative models of care. This study explores survivors’ perceptions on adequacy of their current care, perceived areas of importance and met and unmet survivorship care needs.
Methods: A cross-sectional survey was mailed to adult cancer survivors from 5 NSW oncology units. Eligible survivors were diagnosed in 2008 with no evidence of recurrence in the past 6 months, had adequate English language and were physically and mentally capable of completing the questionnaire. Self-report data were obtained regarding current care (provider and frequency of visits); ranking of physical, psychological and practical areas of importance to survivors; and how well their needs were met in each of these areas.
Results: 182 surveys were returned (ongoing, response rate 48.7% to date). Respondents had a mean age of 59.8 years (range 32-87), 78% were female, with most common primary cancers being breast (65.9%), colorectal (14.8%), prostate (4.9%) and ovarian (2.7%). More than 90% indicated the importance of follow-up was to check for recurrence, reassurance or to learn about late effects. The majority attended regular follow-up with a cancer specialist (98.3%), every 3-6 months (78%). Two thirds (68.7%) reported follow-up with a GP, with 31% not having seen a GP at all. Survivors felt it was important that they were offered information about check-ups (96.5%) and late effects (91.9%), reassurance (89.6%), help with pain and other symptoms (86.2%) and a written follow-up plan (85.9%). The most commonly reported unmet needs were information about late effects (49.7%), managing fatigue (41.2%), genetic risk to family (34.9%), reassurance (32.9%) and psychological support (32.0%).
Conclusions: Cancer survivors report significant unmet survivorship care needs despite intensive specialist-led care. This survey will inform service development to better meet the needs of this large and growing population.