Frequent Pain Linked to Worse Quality of Life in Teens with Cerebral Palsy, Study Reports

Pain severity in teenagers with cerebral palsy (CP) is associated with more motor impairment and has negative effects on general health and quality of life, a study has found.

The study, “Factors associated with pain in adolescents with bilateral cerebral palsy,” was published in the journal Developmental Medicine & Child Neurology.

Cerebral palsy is a motor disorder that is also associated with secondary conditions that negatively affect other body functions. Studies have shown that pain is common in young patients with cerebral palsy — estimates vary between 27 percent and 77 percent — and has a negative impact on their quality of life and well-being.

Researchers at the Evelina London Children’s Hospital and their colleagues set out to explore the factors associated with pain and its severity in teenagers with cerebral palsy. This knowledge could help decide on effective treatments that reduce pain and improve quality of life.

The study recruited 153 teenage patients, with a mean age of 16 years, diagnosed with bilateral cerebral palsy, along with 212 caregivers, which included either parents (mother or father), grandmothers, sisters, aunt, or other carer.

All the participants responded to questionnaires that focused on the frequency of pain and its severity (mild/moderate/severe); and where in the body the pain was felt and when (at rest, when moving, when eating, during the day or night, or all the time). Additionally, the questionnaires focused on related factors and pain treatments.

All individuals with cerebral palsy had participated in the Study of Hips and Physical Experience, which took place in the U.K. and examined hip involvement in the disease.

The presence and severity of pain was assessed based on a visual scale, with zero indicating no pain and 10 indicating severe pain, on the previous day, week, or three months.

Impact of pain on daily life was reported by patients using the Brief Pain Inventory, a 10-item questionnaire of the impact of pain on “recreational activity, school/college/work, mobility, self-care, sleep, mood, and overall enjoyment, which scored 0 (none) to 3 (a lot) with a total score of 0 to 30,” according to the researchers.

Quality of life was assessed using Kidscreen, a 52-item questionnaire completed by caregivers and cerebral palsy patients that covers several dimensions including physical health, psychological well-being in mood and emotions, self-perception, autonomy, home life, money matters, friends, or school and learning.

The frequency of reported pain by parents/caregivers varied over the different time periods: 70% of caregivers reported pain occurred in the previous three months, 59% in the previous week, and 50% during the previous day. Regular pain was reported by 56% of caregivers, of whom 89% considered the pain to be moderate to severe.

Pain was reported by caregivers to be more frequent with higher levels of motor impairment, measured using the Gross Motor Function Classification System (GMFCS), as well as with being non-ambulant versus ambulant and with poorer general health in patients. Pain severity correlated with higher GMFCS scores, use of therapeutic equipment, and general health problems.

Researchers found a significant association between constipation and increased pain severity experienced during the previous day and previous three months.

“For many young people, gastrointestinal function remained a problem, despite treatment,” the researchers wrote.

Motor disorder type, specifically spasticity, was also associated with increased pain severity during the previous day.

More than 70% of caregivers reported pain in the arm, back, hip, leg, or chest, whereas 66% reported pain at multiple sites. For patients classified as non-ambulatory (without leg mobility) higher rates of pain were reported in the hip and abdomen compared with ambulatory patients.

Hip and abdominal pain was significantly correlated with higher GMFCS scores and constipation. Abdominal pain was also linked to being female and being in general ill health, while chest pain was associated with general ill health and constipation.

Although parents reported more frequent pain than that reported by matched young cerebral palsy patients — 46% versus 42% respectively — the researchers found a good agreement between caregivers’ and patients’ answers regarding pain severity scores.

Both patients and caregivers reported that the worst pain occurred during voluntary movement (67% and 41%, respectively) or “when moved” (25% for both). Only 17% reported pain occurrence during daytime rest. Caregivers reported worse pain at night (28%) than young patients (7%).

More than half of caregivers (53%) and 47% of young patients reported the use of pain medication such as analgesics, anti-spasticity therapies, and other medicines.

Simple analgesics such as paracetamol and ibuprofen were reported to be used by 77% of responding patients and 88% of parents/carers with a frequency of “often” or “very often.”

Next to analgesics, muscle relaxants were the second most frequently used treatment, namely baclofen (sold as Lioresal, among other names), diazepam (marketed as Valium), and regular botulinum neurotoxin A (botox) injections. They also report the use of anti-reflux medications and laxatives.

Mobility was the area mostly affected by pain according to patients — 28% described mobility impact as “quite a lot/a great deal” — followed by mood (20%), general activity (17%), and recreational activity (16%).

These findings suggest that pain is common among teenagers with bilateral cerebral palsy and is linked to both motor impairment and general ill health.

“Increasing awareness of pain and the comorbidities in CP [cerebral palsy], particularly general health and constipation, may help prevent and more effectively treat and thereby reduce the high levels of pain experienced by young people with CP,” the researchers concluded.