Forty-three people will be diagnosed with cancer in Alberta today, and roughly 27 of them, or 63 per cent, will live at least five years depending on their cancer type and stage. Because people are living longer with cancer, it’s more important than ever to identify their needs once they have finished treatment and head back to their everyday lives.
Over the last few years, the CancerBridges research team, in collaboration with Sharon Campbell, author of the “Survivor Unmet Needs” survey, has asked cancer survivors to talk about what they’ve been lacking. Overall, more than 800 survivors of both adult and childhood cancers in Alberta were surveyed.
The survey was divided into practical and psychosocial unmet needs – practical needs include getting the information you need, getting what you need to return to work, help with financial issues, access to care when you need it and feeling like you know where to go to get that care. Patient concerns ranged from knowing which sources of information to trust, to getting test results quickly.
Psychosocial needs include aspects of recovery such as feeling able to cope with strains and stresses, dealing with relationships and coping with feeling like you are different from the person you were before cancer. Some concerns that the survivors conveyed included strains on relationships, goal setting and long-term planning, and dealing with feelings of isolation.
The research team did find some good news, as well: 15-20 per cent of all cancer survivors did not have any unmet needs. However, roughly 45 per cent of people had at least one concern for which they required a high level of assistance that they were unable to find. On balance, the respondents reported greater psychosocial than practical needs.
In particular, minorities reported greater unmet needs, and their most pressing needs were different from Caucasian cancer survivors. For survivors still within one to five years after treatment, minority members’ practical needs were just as high as their psychosocial needs. Minority survivors’ top unmet needs included having to pay non-medical costs related to their cancer (travel, accommodation, special foods), making sure they had choices about which hospital or clinic they could go to and finding information about all their treatment choices – including no treatment at all.
Both minority and Caucasian survivors reported difficulties dealing with feeling tired, stressed and worried, and with fears that their cancer had spread.
The good news is that many of these needs are tied to receiving the right kind of information at the right time. Survivors needed to know where to look for help, and who to go to receive help coping with their practical and psychosocial needs. Over the past two years, CancerBridges has provided half-day symposiums where they deliver this type of information (they have spoken to 1,600 survivors, so far). CancerBridges has also published this information on their website, so survivors had a one-stop shop to get connected. In the future, another one-stop shop may be the myhealthalberta.ca website, where Albertans will be able to access their own medical records.
Many people are working to improve the quality of information and access to care for Albertan cancer survivors. Right now we are conducting another survey of adult survivors of childhood cancers. If you were diagnosed as a child in Alberta, and you would like to participate, call Yvonne at 1-888-998-8148.