Patient and Caregiver Experience with Lymphoma from the 2020 Canadian Survey
While our work with lymphoma and CLL patients and families across Canada helps to connect and inform us of the issues facing the community, we and other lymphoma organizations felt the most accurate representation of these challenges would come from directly asking you. To address this, the Lymphoma Coalition, a worldwide network of lymphoma patient groups, created a survey in 2020 for patients and caregivers to provide information about the lymphoma journey and their experiences caring for lymphoma and CLL patients, respectively. This survey was made available globally, with responses received from patients and caregivers across 91 countries. The 2020 Canadian Report Cards provide general information to the Lymphoma and CLL patient and caregiver community based on a subset of Canadian results from a global survey that was conducted in 2020.
Your responses have allowed us to create two Report Cards with corresponding infographics:
1) 2020 Canadian Lymphoma Report Card, which provides the combined responses from all lymphoma and CLL patients across Canada, and also includes survey results from Canadian caregivers. There were 603 Canadian respondents, of which 540 were lymphoma and CLL patients, and 63 were caregivers.
2) 2020 Canadian CLL Report Card which solely summarizes the experience of the 120 Canadian CLL patients.
These report cards and infographics provide a summary that will help inform, educate, and bring awareness to the important realities experienced by the lymphoma community across Canada today. We hope that the information in these reports will highlight the unmet needs and challenges faced by patients and caregivers, and serve as a call to action for patient organizations, healthcare professionals, and provincial health centres and systems to address these gaps. Your feedback; Our goals.
We could not have accomplished this without your participation. We thank you for sharing your experiences, which have helped us to identify the issues today and bring change as we move forward into the future. We acknowledge the Lymphoma Coalition in creating this opportunity for CLL patients to provide their feedback and for sharing the results with us.
You can access a downloadable version of the report cards and infographics below:
To understand how the Canadian patient and caregiver lymphoma experience compares to the global lymphoma experience, Lymphoma Coalition in collaboration with the SouthWestern Ontario Chapter Support Group and Lymphoma Canada, hosted a webinar to identify key differences and similarities. You can now watch the recording here.