Aim To explore data linkage and pain medication as a proxy for pain, to assess differences in pain medication between the cerebral palsy (CP) and the general populations, and to identify factors associated with pain medication in CP. Method This cross‐sectional study linked the Northern Ireland CP Register and two administrative health care databases for people resident in Northern Ireland born between 1981 and 2008. Pain medication as a proxy was validated by replicating analyses from the Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE) studies. Logistic regression compared pain medication in the CP and general populations. Multi‐level regression models assessed factors associated with pain medication in the CP cohort. Results The sample size was 701 075, of whom 1430 (0.2%) were people with CP. There were 358 969 males and 340 677 females in the general population, and 810 males and 620 females in the CP population, with an age range of 4 to 31 years in both groups. The validation exercise produced results similar to the SPARCLE studies. More people with CP received pain medication (61% vs 50.9%) and had twice the odds of being prescribed opioid analgesics (odds ratio [OR]=2.81, 95% confidence interval [CI] 2.32–3.40). Among those with CP, the odds of being prescribed pain medication were higher for: females (OR=1.34, 95% CI 1.06–1.70), younger age (OR=1.60, 95% CI 1.02–2.51), Gross Motor Function Classification System level V (OR=2.60, 95% CI 1.52–4.47), seizures (OR=2.55, 95% CI 1.68–3.87), and higher deprivation score (OR=2.06, 95% CI 1.41–3.24). Interpretation Pain medication is an effective proxy for pain. More people with CP were prescribed pain medication than the general population. Pain medication for people with CP is not only dependent on physiological and clinical characteristics, but also environmental factors. Data linkage using pain medication as a proxy for experiencing pain is a valid method. People with cerebral palsy (CP) are more likely to experience pain than the general population. People with CP have over twice the odds of receiving opioids compared to the general population. The odds of being prescribed pain medication were higher for females with CP. Prescription of pain medication among those with CP is not only dependent on clinical characteristics, but also environmental factors.
ObjectiveTo assess whether being contacted about or participating in previous research and method of approaching potential participants affected recruitment to a transition study from child to adult healthcare services of young people with cerebral palsy (CP).Design and methodsYoung people with CP aged 14–18 years without severe intellectual impairment were identified from regional registers of CP in Northern Ireland and the North of England. χ2 and Mann-Whitney U tests were used to assess differences in CP and sociodemographic characteristics between those recruited and those who refused. Logistic regression was used to assess contact about and recruitment to previous research and method of approach as predictors of recruitment, controlling for demographic and CP characteristics.ResultsOf the 410 young people who were approached; 162 did not respond and of the 248 who responded, 96 (23%) were recruited. There were significant differences between those recruited and those who refused in age and number of previous studies they had participated in. Those who were older or who had previously been approached about research were more likely to be recruited to our study. However, those who had been recruited to previous studies were more likely to refuse to join our study.ConclusionsThe method of approach to potential participants did not affect recruitment. Older adolescents and those who had been approached about previous research were more likely to take part in our study, although there was evidence of research fatigue because if they had actually been recruited to the previous studies they were less likely to join our study. Recruitment of adolescents to studies remains challenging.
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