Pain is a common problem among children and adolescents with cerebral palsy (CP), and it can negatively affect daily activities and sleep. But, being older, female, and having decreased mobility are factors that increase the risk of experiencing a higher frequency or intensity of pain.
Those findings are included in the Swedish study “Pain in children and adolescents with cerebral palsy – a cross-sectional register study of 3545 individuals,” which was published in the journal BMC Neurology.
Estimates indicate that 30–70% of CP patients experience pain on a regular basis. Pain in these patients usually affects their lower extremities, but headaches and abdominal pain also are reported frequently.
Studies have shown that pain can reduce the quality of life of CP patients, and have detrimental effects on their participation in daily activities. Treatment of pain is typically focused on relieving symptoms and maintaining function.
In order to obtain more insights about the prevalence and consequences of pain among children and adolescents with CP, researchers at Lund University, in Sweden, analyzed information from the Cerebral Palsy Follow-Up Programme (CPUP).
The CPUP was created in Sweden during the 1990s. About 95% of all children and adolescents in the country with CP are followed through the program, and it includes information about age, sex, mobility, pain intensity, site of pain, disruption of sleep and daily activities, among others.
The research team analyzed CPUP data collected in 2017 and 2018 from 3,545 participants (2,065 boys and 1,480 girls), ages 4 to 18. Pain was reported by the patients or by proxy (e.g., a caregiver), and mobility and motor function were classified according to the Gross Motor Function Classification System (GMFCS).
Results showed that the overall prevalence of pain in the group was 44%, which is lower than what has been reported previously in international studies (up to 60–70%). One explanation could be that the CPUP includes the whole CP population, and not just those seeking medical care. Another reason could be due to the success of the CPUP program in Sweden, leading to fewer children with painful dislocated hips, contractures, and scoliosis.
Girls with CP were found to report pain 1.28 times more often than boys. Being older also was found to be associated with a higher risk of pain — 32.8% of 4- to 5-year-olds reported pain, compared to 57.3% among those 18 years old. Older patients also reported more intense pain.
“This demonstrates the importance of treating and preventing pain, as not only pain frequency but also pain severity is a more common problem at older ages,” the researchers wrote.
Pain was most common in the lower extremities — feet/lower legs, followed by hips/thighs and knees — regardless of age, sex, and GMFCS level.
The most intense pain reported was on the hips, thighs and abdomen (stomach). Interestingly, researchers found that most intense pain was correlated with a higher GMFCS level, meaning a lower mobility.
“Those at higher GMFCS-levels reported more intense pain, making this a group of special concern,” they wrote.
The team also noted that the pain induced on different body parts is most likely different at each level of mobility. For instance, if children are more mobile, then more stress will be placed on the feet and lower legs, whereas wheelchair users will have more stress on hips and thighs due to sitting in the same position for long periods of time.
Regarding sleep and daily activities, results showed that pain disturbed the sleep of 35.7% of patients reporting pain in the past four weeks. Sleep was more often disturbed in those with lower mobility (higher GMFCS level).
Pain was reported to disturb daily activities during the past four weeks by 61% of the participants, especially among those with lower mobility and moderate-to-severe pain intensity.
Information about pain medication taken by study participants was not available. This “would have been informative and is an important topic for future studies,” the researchers noted.
Based on the results, they concluded that “pain is common in children and adolescents with CP,” and that “consistent with other studies, girls and older age are risk factors for pain.”
The team also found that “pain often disturbs daily activities and sleep. Two-thirds of all children and adolescents with CP reported that their pain disturbed their daily activities, and one-third reported that pain disturbed their sleep.”
The overall results emphasize the importance of developing better treatment and prevention strategies for pain among children and adolescents with CP.