Patient engagement and attitude towards goal setting
cancer, bone pain, fatigue, pain
CANCER, DISEASE
The PPs noted that there was great variation in the attitudes of cancer survivor participants. They believed that most patients were interested and engaged in their prevention visits.Many patients had very positive responses to the study, and some were motivated to participate in it so that others would benefit in the future. These patients were receptive, invested and enjoyed the program.Being a cancer survivor, I wish I could help and support others dealing with this dreadful disease. Having someone who has been through the experience would be so beneficial. [Patient, female, AB]However, PPs noted that other patients were less engaged or more reluctant to engage. Some patients were not interested in setting specific goals. Others already had health goals that they were actively working on. There were also patients who regularly saw their oncologist and did not feel that they needed additional support. However, some patients who were at first reluctant to participate in goalsetting became more engaged over time.[Prevention visits] might be more useful for folks who had not already reviewed issues with doctors and dietitians [Patient, male, ON]
[T]here were patients that initially didn’t seem motivated… like, the first visit, they seemed a bit guarded and they didn’t want to make any goals. But then the second visit they opened up a bit and then they were ready to make goals [PP, KI046, AB]Some PPs noted that where patients were in their cancer survivorship journey also varied as did their likelihood of being on track with cancer surveillance:And a lot of the cancer survivors to our site… a lot of them are… [past] that… five-year mark since they've been diagnosed. So, a lot of them have been discharged from cancer clinics and just ongoing kind of regular care with their physician. So, for the most part, they were able to stay on track with cancer screening and bloodwork and whatever else that they might need to do as part of their cancer screening [PP, KI036, ON]
Like the cancer surveillance itself it was almost like it wasn’t there. The only thing that I could see there was the mammogram… the other stuff, like the bone density, one lady did that every five years, but it was only because I brought it up…. So, like it wasn’t obvious… there was no planning in her chart that I could see and they were both around ten years… And the long-term effects, like one lady actually does have a lot of pain, residual bone pain… ever since she’s been diagnosed ten years ago. And you know her treatment plan was outlined for that. You know but the rest of it, it wasn’t real obvious... [Prevention Practitioner, KI039, NL]Patient disengagement, especially for patients earlier on in their cancer survivorship journey, may also have been explained by appointment fatigue. One patient mentioned their frustration with multiple appointments and the lack of communication between their health care providers that resulted in always having to re-explain their situation to practitioners.[I] have multiple specialists and a FP [family physician] … people don't always seem to know what the other is doing … lots of appointments and this is another one! ... tired of always talking and explaining my scenario. [Patient, female, AB]