Parent perspectives of arthritis-related pain

We know that pain is a common experience in childhood arthritis, and that it is often due to both the disease itself and some of the treatments. In partnership with Cassie & Friends, we launched an online survey to better understand parents’ thoughts and feelings about their child’s treatment-related pain, and how that impacts the uptake of various treatments. The response to this survey was incredible! Over 300 families took part from around the world.

Our survey found that indeed, pain, including treatment pain is a common experience. Over 75% of families reported that their child was prescribed a treatment that involved some degree of pain (e.g., self-injections), and over 2/3 of families reported that their child experienced painful side effects. We published a paper of these results if you want to learn more (see link below in News and Media)

Thank you to all the families who took part!

We are currently contacting some of the survey participants for follow up interviews to better understand their experiences with their child’s treatments. Check back for more updates in the coming months!

This study has been approved by the IWK Health Centre Research Ethics Board.