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...

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.

No abstract

No abstract

Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16-26 years) completed a web-based questionnaire. Twenty-two percent of the young persons were still in pediatric care; 22% of the others had no care coordinator, although their health needs were the same. Parents valued the care provided by the pediatrician, and wished to see it continued. They were critical about how they had been prepared for transfer to adult care. Parents provided suggestions to improve transitional care, such as early start, information provision, and a joint consultation between pediatric and adult care.

Objective: To measure environmental tobacco smoke (ETS) exposure in psychiatric settings and to assess determinants of support for complete smoking bans. Design: Cross sectional study Setting: Dutch psychiatric hospitals, outpatient care institutions, and sheltered home facilities. Subjects: A random sample of 540 treatment staff, 306 attendants/nurses, and 93 patients. Main outcome measures: Self reported ETS exposure, current smoking policy, compliance with smoking policy, beliefs about smoking bans. Results: 87% of respondents were exposed to tobacco smoke in psychiatric institutions; 29% said that on an average day they were exposed to ''a lot of smoke''. Although ETS originates mainly from smoking patients, both non-compliance from patients and employees with existing bans resulted in non-smokers being exposed to ETS. Due to non-compliance, ETS exposure was quite high when there is a general smoking ban (designated areas option). Only with a complete ban was compliance good and employees sufficiently protected from ETS exposure. Psychiatrists, psychologists, physicians, attendants, and nurses were most concerned about resistance from patients, partly because of the fear of infringing on patients' freedom to smoke. Conclusions: Complete smoking bans are the only way to fully protect those working in psychiatry from ETS exposure, mainly because general smoking bans are not sufficiently complied with. Communication strategies to improve compliance with complete bans are crucial to protect those working in psychiatry from ETS. Compliance could be improved by addressing the belief that the ban will effectively result in less ETS exposure and the issue of patients' freedom to smoke versus employees' right to work in a smoke-free environment.

No abstract

Background. There is little focus on adults with cerebral palsy (CP) in research and health care and insufficient knowledge on how to identify and manage pain in this population.J o u r n a l P r e -p r o o f 2 Objectives. This systematic review and meta-analysis aimed to determine whether pain prevalence in adults with CP is high and to explore variations in pain prevalence of subgroups, pain locations, pain severity and pain interference. Methods. Potential datasets were identified by experts in the field and literature searches in Embase, MEDLINE, and Cochrane, from January 2000 to October 2016. Included studies had a representative sample of ≥ 25 adults with CP and ≥ 1 pain outcomes. Methodological quality assessment, pain prevalence estimates and logistic regression models for subgroup effects on pain prevalence were conducted. Results. In total, 17 eligible studies were identified from 4584 publications. A meta-analysis was performed with individual participant data from 15 studies totalling 1243 participants (mean [SD] age 34.3 [12.6] years). Overall mean pain prevalence was 70% (95% CI 62-78).Women were more likely to have pain than men (P<0.001). The odds of pain was increased in adults with gross motor function level II (odds ratio [OR] 1.92, 95% CI 1.22-3.12) and IV (OR 1.77, 95% CI 1.03-4.29). Participants with pain reported pain predominantly in the legs (76%, 95% CI 66-84), and mean pain severity was 3.7/10 (95% CI 2.7-4.7) and pain interference 3.5/10 (95% CI 2.5-4.5).Conclusions. This meta-analysis provides the first reliable pain prevalence estimate in a large international sample of adults with CP. The high prevalence of pain, 70%, suggests that adults with CP should be routinely screened for pain and treated accordingly. The range of measurement instruments used by the included studies emphasizes using common outcome measures specific to pain internationally.