Results of the 2015 Thyroid Cancer Canada Patient Survey
Thyroid Cancer Canada asked 488 thyroid cancer patients what kind of information and support they needed.
What information do patients and survivors need?
Patients want to be partners in their care, and find ways to have more control over their experience – starting with more information about what to expect. Many patients reported that they did not feel fully informed about the side effects of treatment and how it would impact their lives and wellbeing, especially among those who felt that their doctor “played down” the thyroid cancer experience.
What supports do patients and survivors need?
Not only do patients need to feel like they have a voice, they need to know that they are not alone, and that there are places where they can read and/or hear about the experiences of others who have gone through similar situations.
How do patients and survivors want to access information and supports?
Patients expect information from their doctors and specialists, however, many feel that their doctors lack an understanding of the actual thyroid cancer experience, or a lack of empathy for that they are going through. When patients seek information online, it is difficult for them to find information that they can trust. Many patients don’t feel that they are getting info about thyroid cancer, and about Thyroid Cancer Canada early enough.
Ten things that would change the thyroid cancer experience for patients
Based on what they told us, we identified ten things that would change the thyroid cancer experience for patients.
- A better understanding of what to expect, both physically and emotionally
- Feeling like a partner in their care
- Acknowledgement of the fear, worry, anxiety and depression that many patients feel
- Access to peer support and seeing that there are others with a shared experience
- An understanding of how to navigate the health care system
- Access to information earlier on in their diagnosis and treatment process
- Better awareness of what information and supports are available, and what to ask at each stage
- Centralized, easy to access information and support tools
- A better understanding of blood test results and managing medication
- A better understanding of how thyroid cancer diagnosis and treatment affects pregnancy and nursing