In the last 40 years the prevalence of CP has risen to well above 2.0 per 1000 life births. In this time span the proportion of low-birthweight infants rose, the proportion of diplegia decreased, while the proportion of hemiplegia increased. CP is more prevalent in more deprived socio-economic populations. The majority of people with CP have the spastic syndrome of which the diplegic group is the smallest. Dependent on the subgroup of CP, 25-80% have additional impairments. A large proportion has some kind of cognitive impairment; the prevalence varies with the type of CP and especially increases when epilepsy is present. Epilepsy is present in 20-40%; it is most common among the hemi- and tetraplegics. Sensibility of the hands is impaired in about half. Chronic pain is reported by more than a quarter of the adults. Up to 80% have at least some impairment of speech. Low visual acuity is reported in almost three-quarters of all children. Half of all children have gastrointestinal and feeding problems. Stunted growth occurs in a quarter, while under- or overweight problems are present in half of the children. Almost 70% of people with spastic CP have abnormal brain CT findings; abnormal cranial ultrasounds is most strongly associated with hemiplegia, normal cranial ultrasounds with diplegia. The most important risk factors for CP are low birthweight, intrauterine infections and multiple gestation.

The aim of this study is to show the relationship between test-retest reproducibility and responsiveness and to introduce the smallest real difference (SRD) approach, using the sickness impact profile (SIP) in chronic stroke patients as an example. Forty chronic stroke patients were interviewed twice by the same examiner, with a 1-week interval. All patients were interviewed during the qualification period preceding a randomized clinical trial. Test-retest reproducibility has been quantified by the intraclass correlation coefficient (ICC). the standard error of measurement (SEM) and the related smallest real difference (SRD). Responsiveness was defined as the ratio of the clinically relevant change to the SD of the within-stable-subject test-retest differences. The ICC for the total SIP was 0.92, whereas the ICCs for the specified SIP categories varied from 0.63 for the category 'recreation and pastime' to 0.88 for the category 'work'. However, both the SEM and the SRD far more capture the essence of the reproducibility of a measurement instrument. For instance, a total SIP score of an individual patient of 28.3% (which is taken as an example, being the mean score in the study population) should decrease by at least 9.26% or approximately 13 items, before any improvement beyond reproducibility noise can be detected. The responsiveness to change of a health status measurement instrument is closely related to its test-retest reproducibility. This relationship becomes more evident when the SEM and the SRD are used to quantify reproducibility, than when ICC or other correlation coefficients are used.

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AIM To investigate the prevalence and co-occurrence of chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy (SBCP) and explore associations of chronic pain and fatigue with depressive symptoms and daily functioning.METHOD Fifty-six adults with SBCP without severe cognitive impairment participated (35 males, 21 females; mean age 36y 5mo, SD 5y 10mo; Gross Motor Function Classification System level I [13], II [28], III [11], IV [4]). Chronic pain (>3mo), severity and nature of fatigue (Fatigue Severity Scale; Multidimensional Fatigue Inventory), and depressive symptoms (Center for Epidemiological Studies Depression Scale) were assessed. Associations were explored using multivariable logistic regression analyses. RESULTSThe study sample had a higher prevalence of chronic pain (75% vs 39%; p<0.001), mean fatigue (Fatigue Severity Scale, 4.4 [SD 1.3] vs 2.9 [SD 1.1]; p<0.001), and prevalence of depressive symptoms (25% vs 12%; p=0.004) than Dutch healthy reference samples. Chronic pain and severe fatigue co-occurred in 34% and in combination with depressive symptoms in 16% of the participants. Severity of fatigue was associated with depressive symptoms (OR 3.38; p<0.01). Chronic pain and fatigue were not associated with limitations in daily functioning.INTERPRETATION These findings suggest that adults with SBCP are severely affected by chronic pain, fatigue, and depressive symptoms, in addition to their spastic paresis.Pain and fatigue are common symptoms in adults with cerebral palsy (CP). [1][2][3][4] In CP, pain often begins at an early age and frequently becomes a chronic condition. 1,2,4 At least 67% of adults with CP in the USA experience chronic pain. 4 Fatigue is a well-known symptom in various neurological disorders, but is rarely studied in CP. 3,5,6 In a Norwegian study 3,7 the prevalence of fatigue was higher in adults with CP (30%) than in the general population (22%).Pain and fatigue are also common symptoms in the general population 8,9 and often co-occur, especially when they are severe. 8 In the general population, pain and fatigue have been shown to have an impact on daily activities 9 and to be associated with psychological distress, negative mood, and depression. 8,10 For the impact of pain and fatigue on daily activities in CP, Schwartz et al. 4 found that adults with CP tended to report only minor interference from pain on their activity level and social or work functioning, whereas Jahnsen et al.2,3 demonstrated that one-third of their CP sample reported a moderate to extreme impact of pain in daily life and an association of fatigue with limitations due to physical health problems. In a study among children with CP, pain and fatigue were associated with lowered school functioning and, in some cases, partly explained the association between severity of CP and performance at school. 5 Very little has been reported about depression in adults with CP. Jensen et al. 11 found that in adults with CP experiencing chronic pain at least 42% had depressive symp...

A significant number of adolescents and young adults with CP without severe learning disabilities are restricted in daily activities and social participation. These problems are mainly attributable to restricted gross motor functioning, a low level of education and younger age.

It is concluded that the SEM, the corresponding confidence interval, and the smallest detectable difference are practical measures for expressing reliability of measurements on an individual. Generalizability theory is a powerful tool for estimating the magnitude of multiple sources of measurement error and for assessing the reliability of measurements tailored to specific clinical applications.

Based on the high prevalence of pain and joint deformities and the decrease in the utilization of healthcare services, systematic follow-up in adults with cerebral palsy seems warranted. Cerebral palsy needs to be considered as a life-long condition, requiring a life-span perspective in order to better organize optimal care.

Caring for an adult son with DMD is burdensome, but rewarding. Subjective caregiver burden of parents may be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping by the patient from childhood.