Background
Cancer survivors and carers experience ongoing side-effects and have unmet needs. To support the prioritisation of collaborative statewide survivorship care (SC) improvement work, this survey aimed to understand the consumer experience receiving and accessing SC.
Method
Cancer survivors who had completed initial cancer treatment, and carers, were invited through social media and Victorian health service consumer networks to complete an online survey, which was based on the Victorian Quality Cancer SC Framework and assessed experience with follow-up care, information and support received and SC plans (SCPs). Responses were collected via open, limited option and Likert scale questions.
Results
Of 69 survey respondents (n=55 survivors, n=14 carers), majority were female (72%, n=50/69), lived regionally (59%, n=41/69), with a mean age of 60 years. 72% (n=50/69) received their SC at a hospital. The majority (86%, n=57/66) did not receive a SCP, however 74% (n=42/57) felt this would have been useful.
Over half did not receive information but wanted to, or wanted to receive more information about the emotional (61%, n=39/64), social (53%, n=34/64) and physical (51%, n=33/65) impacts of cancer.
Most had not been asked by their healthcare practitioner how cancer and its treatment had affected them emotionally (58%, n=38/65) or socially (62%, n=40/65). Of those not asked, just under half (47%, n=18/38 and 43%, n=17/40 respectively) would have liked to have this conversation.
Themes emerged about the value of health professional and peer support, the importance of supporting the transition to the survivorship phase and the need for better coordination and integration of care across/within healthcare settings.
Conclusion
Although desiring this, many Victorian cancer survivors and carers do not receive information or have supportive conversations with health professionals. Consumer experience of SC could be improved with better coordination of care. Findings will inform the development of new SC initiatives.