Pain report and musculoskeletal impairment in young people with severe forms of cerebral palsy: A population-based series.
Use the Paediatric Pain Profile alongside parent report to capture pain in clients with severe CP who can’t self-report.
01Research in Context
What this study did
Doctors looked at pain in youth with severe cerebral palsy. They used two tools: the Paediatric Pain Profile (PPP) and a parent health survey (CHQ).
Kids who could talk gave their own pain rating. Kids who could not talk were rated only by parents.
What they found
About 1 in 7 youth said their pain was severe or very severe.
The PPP caught high pain in non-talkers, but its scores only weakly matched the CHQ scores.
How this fits with other research
Dang et al. (2015) tracked the same group earlier and showed that early pain predicts less teen participation. The new paper adds how often that pain shows up.
Chen et al. (2013) tested a participation tool in preschool CP. Both studies validate tools for kids who cannot self-report, one for pain, one for play.
Golubović et al. (2013) found teens with ID and parents disagree on quality-of-life ratings. The weak PPP-CHQ link here looks like the same proxy-report gap.
Why it matters
You now have a number to quote to funders: severe pain is not rare in severe CP. Use the PPP plus parent interview during every re-auth. If the child cannot speak, trust the PPP score even when it clashes with other charts.
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02At a glance
03Original abstract
BACKGROUND: While pain is reportedly more prevalent in more functionally impaired children with cerebral palsy, information is scant in those with poor communication skills. METHODS: Young people (4-27 years) with severe forms of cerebral palsy were recruited from a population-based register. The Child Health Questionnaire (CHQ) provided information on general health and bodily pain; the Paediatric Pain Profile (PPP) was used for participants with limited communication; and the Spinal Alignment and Range of Motion Measure (SAROMM) described musculoskeletal impairment. RESULTS: 123 young people (GMFCS IV=55 and V=68) and their families/carers participated. Fourteen percent of CHQ responses (n=123) reported severe/very severe pain in recent weeks, whilst 7% reported pain every/almost every day. CHQ pain report was significantly higher for young people in GMFCS level V and correlated significantly with both global health and musculoskeletal impairment. High levels of pain were recorded on the PPP for non-communicating children but only a weak correlation between PPP and CHQ scores was detected. CONCLUSION: Managing pain in young people with severe musculoskeletal and cognitive impairment presents a huge challenge to carers and professionals. The PPP may represent a useful adjunct in those young people with severe communication difficulties.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2016.10.006