Pain in individuals with early onset or congenital disabilities from public health perspective

Pain is prevalent among individuals with cerebral palsy (CP), an early-onset disability, and spina bifida (SB), a congenital disability. Existing literature on pain patterns of CP and SB relies heavily on cross-sectional approaches or has short follow-up periods; thereby, the trajectories of pain experienced by these populations over their lifetimes remain unknown. Pain experienced by this population at different developmental ages needs to be recognized to develop tailored pain management strategies.
The doctoral project aims to fill this gap by determining the longitudinal pain trajectory of individuals with developmental disabilities.

Pain shouldn’t be part of growing up for children with developmental disabilities!

Pain is a universal experience — but for children with developmental disabilities, it can be more frequent, complex, and difficult to manage. These children often live with additional health conditions that make recognizing and treating pain more challenging.
Surprisingly, most research only looks at pain at one or two points in time. This leaves us with limited knowledge about how pain develops or changes as children with developmental disabilities grow.
Our research project aims to bridge that gap. We’re studying how pain progresses in children with developmental disabilities, using real-world data from Sweden’s national cerebral palsy follow-up program (CPUP).
By identifying long-term patterns of pain, our goal is to shift pain care from a reactive to a preventive approach — helping clinicians spot high-risk individuals early and provide timely care and support. In the long run, we hope this will improve pain care, reduce suffering from pain, and improve quality of life for children with developmental disabilities.

We strongly believe that every child deserves a childhood with less pain — and more possibility.