217 research outputs found

    Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy

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    Purpose: Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references. Materials and methods: Young adults with cerebral palsy (n = 97, aged 21-34 years) and age-matched references from the general population (n = 190) rated pain using a numeric rating scale and fatigue, depressive symptoms, sleep disturbance and global health using Patient-Reported Outcomes Measurement Information System (R) short forms. Scores were compared between cerebral palsy subgroups and the reference population. Correlation coefficients and linear regression analyses assessed interrelationships of health issues and associations with global health. Results: Individuals with Gross Motor Function Classification System level I had less pain, fatigue and depressive symptoms, while individuals with levels II and III-V had more pain (53% and 56%, p <0.001) and those with levels III-V more fatigue (39%, p = 0.035) than references (pain: 26%, fatigue: 14%). Pain and fatigue were more interrelated (correlation coefficients: 0.71 vs. 0.41) and stronger associated with global mental health in individuals with cerebral palsy. Conclusions: Young adults with Gross Motor Function Classification System levels II-V report more pain and those with levels III-V report more fatigue than references. Pain and fatigue are highly interrelated and specifically relate to mental health in individuals with cerebral palsy

    Development curves of communication and social interaction in individuals with cerebral palsy

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    Aim: To determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP). Method: This Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90) using nonlinear mixed-effects modeling. Results: One-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large. Interpretation: Individuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development. What this paper adds: Communication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals. Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation

    Inactive and sedentary lifestyles amongst ambulatory adolescents and young adults with cerebral palsy

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    textabstractBackground: To assess physical behaviour, including physical activity and sedentary behaviour, of ambulatory adolescents and young adults with cerebral palsy (CP). We compared participant physical behaviour to that of able-bodied persons and assessed differences related to Gross Motor Functioning Classification System (GMFCS) level and CP distribution (unilateral/bilateral). Methods. In 48 ambulatory persons aged 16 to 24 years with spastic CP and in 32 able-bodied controls, physical behaviour was objectively determined with an accelerometer-based activity monitor. Total duration, intensity and type of physical activity were assessed and sedentary time was determined (lying and sitting). Furthermore, distribution of walking bouts and sitting bouts was specified. Results: Adolescents and young adults with CP spent 8.6% of 24 hours physically active and 79.5% sedentary, corresponding with respectively 123 minutes and 1147 minutes per 24 hours. Compared to able-bodie

    Autonomy in participation in cerebral palsy from childhood to adulthood

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    Aim To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (pIndividuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains. Regarding intimate relationships, they continued to have less experience compared to age-matched references. Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V.</p

    The psychological effects of terrorism are moderated by cultural worldviews

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    Terrorism cannot be easily studied experimentally for obvious reasons. We report the results of a laboratory study (N = 149) testing the effect of cultural worldviews on feelings of threat and hostility toward Muslims in France that include in the design the deadly terrorist attack of January 7th 2015 in Paris as a naturally occurring independent variable. The results replicate past research by showing that in a natural context, people felt more threatened and more hostile toward Muslims after the terrorist attack than before. However, the reverse occurred in an experimental condition that made the French cultural worldview of colorblind equality salient: People felt less threatened and less hostile after the terrorist attack than before. These results provide, for the first time in the context of a real terrorist attack, support for Terror Management Theory's proposal that cultural worldviews are an effective buffer against terror

    Effect evaluation of a vocational rehabilitation program for young adults with chronic physical conditions at risk for unemployment:A controlled clinical trial

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    Background: The work participation of young adults with chronic physical conditions lag behind compared to healthy age-mates. ‘At Work’ is a vocational rehabilitation intervention provided by occupational therapists, that supports them for entering the competitive labour market after graduating post-secondary education. Aim: To evaluate the effects of ‘At Work’ on self-efficacy, work-ability and employment status as compared to usual care. Materials and methods: In total, 88 young adults were included in a multicentre controlled trial; 49 entered ‘At Work’, 39 received usual care. GEE-analyses were applied. Results:Scores on all outcome measures substantially improved over time in the intervention group, but no significant effects were found as compared to the control group. The effect on general self-efficacy showed a positive trend in favour of the intervention group. Conclusions and significance: Unlike previous study results pointing to positive outcomes of At Work’, the current study did not support the effectiveness of this program on work-related self-efficacy, work-ability and paid employment, as compared to usual care. Yet, we did find an indication for positive intervention effect on general self-efficacy, which is known to be an important capacity to achieve social participation.</p

    Meaningful outcomes for children and their caregivers attending a paediatric brain centre

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    Aim: To identify meaningful outcomes of children and their caregivers attending a paediatric brain centre. Method: We compiled a long list of outcomes of health and functioning of children with brain-related disorders such as cerebral palsy, spina bifida, (genetic) neurodevelopmental disorders, and acquired brain injury. We incorporated three perspectives: patients, health care professionals, and published outcome sets. An aggregated list was categorized using the International Classification of Functioning, Disability, and Health: Children and Youth version in a patient validation survey for children and parent-caregivers to prioritize outcomes. Outcomes were considered meaningful when ranked ‘very important’ by 70% or more of the participants. Results: We identified 104 outcomes from the three perspectives. After categorizing, 59 outcomes were included in the survey. Thirty-three surveys were completed by children (n = 4), caregivers (n = 24), and parent-caregivers together with their child (n = 5). Respondents prioritized 27 meaningful outcomes covering various aspects of health and functioning: emotional well-being, quality of life, mental and sensory functions, pain, physical health, and activities (communication, mobility, self-care, interpersonal relationships). Parent-caregiver concerns and environmental factors were newly identified outcomes. Interpretation: Children and parent-caregivers identified meaningful outcomes covering various aspects of health and functioning, including caregiver concerns and environmental factors. We propose including those in future outcome sets for children with neurodisability. What this paper adds: Outcomes that children with brain-related disorders and their parent-caregivers consider to be the most meaningful cover a wide range of aspects of functioning. Involving these children and their parent-caregivers resulted in the identification of important outcomes that were not covered by professionals and the literature. Parent-caregiver-related factors (coping, burden of care) and environmental factors (support, attitudes, and [health care] services) were identified as meaningful.</p
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