Gianna is a 4-year old girl with bilateral cerebral palsy, GMFMCS level IV. She has mixed tone with components of both spasticity and dystonia. Over the last month she has been acting differently, with loud vocalizations, irritability, agitation, increased muscle tone, sleeplessness, and episodes of teeth grinding. Everyone in her family has been feeling heightened stress. Is Gianna in pain? She can’t clearly relay what she is feeling and where it hurts because she is non-verbal. There is no obvious swelling or redness on any area of her body. As her PT, how can you tell if she is experiencing pain?
Gianna’s situation is common. The SPARCLE study in Europe identified that children with CP experience more pain than their peers and that pain can lead to a lower quality of life, decreased participation, and family stress. Pain has been found to decrease quality of life more than the physical disability itself. As a health practitioner, it can be difficult to determine the presence of pain unless there is a visible sign, localized pain, or the child can verbalize what they are feeling. In any case, physical therapists assess pain in all patients, including those who have chronic pain, global pain, and those who are not able to describe or communicate what they are feeling. Rehab professionals are also responsible for keeping children within the boundaries of their comfort while working and certainly not contributing to their pain. Over the last decade it has been widely discussed that pain is under reported in children, especially those who are non-communicating. But what do we know about pain in cerebral palsy and what tools do we have to discover and measure it in the children we care for?
For Gianna, her family completed a two-hour observation and filled out the Non-communicating Children’s Pain Checklist- revised (NCCPC-R), an observational pain scale developed for use in children 3-18 who are unable to communicate because of cognitive impairments or disabilities. Her score was 14. A score of 7 or more indicates that a child has pain with 84% accuracy. Further evaluation discovered that Gianna had experienced a sudden and rapid progression in her hip subluxation which was determined to be the cause of her intense pain.