Effect of pain on mood affective disorders in adults with cerebral palsy

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/155961/1/dmcn14559_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/155961/2/dmcn14559.pd

Inactive lifestyle in adults with bilateral spastic cerebral palsy

Objective: To quantify the level of everyday physical activity in adults with bilateral spastic cerebral palsy, and to study associations with personal and cerebral palsy-related characteristics. Participants and methods: Fifty-six adults with bilateral spastic cerebral palsy (mean age 36.4 (standard deviation (SD) 5.8) years, 62% male) participated in the study. Approximately 75% had high gross motor functioning. Level of everyday physical activity was measured with an accelerometry-based Activity Monitor and was characterized by: (i) duration of dynamic activities (composite measure, percentage of 24 h); (ii) intensity of activity (motility, in gravitational acceleration (g)); and (iii) number of periods of continuous dynamic activity. Outcomes in adults with cerebral palsy were compared with those for able-bodied age-mates. Results: Duration of dynamic activities was 8.1 (SD 3.7) % (116 min per day), and intensity of activity was 0.020 (SD 0.007) g; both outcomes were significantly lower compared with able-bodied age-mates. Of adults with cerebral palsy, 39% had at least one period of continuous dynamic activities lasting longer than 10 min per day. Gross motor functioning was significantly associated with level of everyday physical activity (Rs -0.34 to -0.48; p≤0.01). Conclusion: Adults with bilateral spastic cerebral palsy, especially those with low-level gross motor functioning, are at risk for an inactive lifestyle

Developing an ICF Core Set for adults with cerebral palsy: A Global expert survey of relevant functions and contextual factors

OBJECTIVE: To identify areas of functioning in adults with cerebral palsy that are considered relevant by experts, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with cerebral palsy. PARTICIPANTS: Experts from various professional backgrounds worldwide who had experience working with adults with cerebral palsy for ≥2 years and were able to complete the survey in the English language. METHODS: A cross-sectional study using an international internet-based survey. The experts were asked to address relevant areas of functioning in adults with cerebral palsy. These areas of functioning were then linked to the ICF and the frequencies analysed. RESULTS: A total of 126 experts from 32 countries completed the survey. From the responses, 217 unique second-level ICF categories were identified. The three most frequently mentioned categories were "design, construction and building products and technology of buildings for public use (e150, 77%) and private use" (e155, 67%), followed by "sensation of pain" (b280, 62%). CONCLUSION: The broad diversity of ICF categories reported by the experts emphasize the known heterogeneity of cerebral palsy and the variety of func-tioning in adulthood. They also reported on many environmental factors, illustrating the importance of person-environment interactions. These findings provide information about relevant issues for use in developing an ICF Core Set for adults with cerebral palsy

Epidemiology of Cerebral Palsy in Adulthood: A Systematic Review and Meta-analysis of the Most Frequently Studied Outcomes

Objective: To describe the epidemiology of health status, impairments, activities and participation in adults with cerebral palsy (CP). Data Sources: Embase, MEDLINE, Web of Science, PsycINFO, Cumulative Index to Nursing and Allied Health, Cochrane, and Google Scholar were searched for 3 themes (“cerebral palsy,” “adult,” and “outcome assessment”) in literature published between January 2000 and December 2018. Study Selection: Full-article peer-reviewed English journal articles on descriptive, observational, or experimental studies describing the most studied outcomes in adults with CP (n≥25, age≥18y) were included. Studies were included in the analyses if frequently studied outcomes were described in at least 3 studies using similar methods of assessment. Data Extraction: Data were extracted independently by 2 authors from 65 articles (total N=28,429) using a standardized score sheet. Data Synthesis: Meta-analyses revealed that overall, on average 65.1% (95% confidence interval [CI], 55.1-74.5) of adults with CP experienced pain, 57.9% (95% CI, 51.1-64.6) were ambulant, 65.5% (95% CI, 61.2-69.7) had little or no limitation in manual ability, 18.2% (95% CI, 10.6-27.2) had tertiary education, 39.2% (95% CI, 31.5;47.1) were employed, and 29.3% (95% CI, 9.0-55.3) lived independently. In adults without intellectual disability, proportions of individuals who were ambulant (72.6% [95% CI, 58.8-84.5]) and lived independently (90.0% [95% CI, 83.8-94.9]) were higher (P=.014 and P<.01, respectively). The Fatigue Severity Scale score was 4.1 (95% CI, 3.8-4.4). Epilepsy (28.8% [95% CI, 20.1-38.4]) and asthma (28.3% [95% CI, 18.7-38.9]) were especially prevalent comorbidities. Conclusions: The present systematic review and meta-analysis on the epidemiology of adults with CP provided state-of-the-art knowledge on the most frequently studied outcomes. On average, adults with CP are fatigued, and a majority experience pain, are ambulant, and have little or no difficulty with manual ability. On average, 40% are employed and 30% live independently. More uniformity in assessment and reports is advised to improve knowledge on epidemiology and gain insight in more outcomes

Real-time daily fatigue, sleep, physical activity, and health-related fitness in adults with cerebral palsy

Aim To explore whether subgroups of adults with cerebral palsy (CP) with different fatigue diurnal profiles can be discerned, and to explore whether sleep, physical activity, or health-related fitness are associated with these profiles. Method Thirty-two adults (median age 29 years 8 months; range 20-54 years; 11 males, 21 females) with spastic CP (Gross Motor Function Classification System levels I-III) with physical activity-related fatigue complaints participated. Real-time fatigue and physical activity were assessed for 7 consecutive days by short message service text four times during the day and by wearing an accelerometer respectively. Sleep was assessed by the Pittsburgh Sleep Quality Index, and fitness by assessing body composition and aerobic capacity. Latent class growth modelling was used to classify subgroups according to their diurnal profiles of real-time fatigue. Univariable multinomial logistic regression analysis explored whether participant characteristics, sleep, physical activity, or health-related fitness were associated with diurnal profiles. Results Three distinct fatigue diurnal profiles were identified: stable low (n = 10), increasing (n = 14), and stable high (n = 8). Only aerobic capacity was associated with fatigue profiles (odds ratio 1.15, 95% confidence interval 1.00-1.34; p = 0.05). Interpretation Fatigue in adults with CP may be low or high stable or may increase during the day. These findings indicate the relevance of assessing fatigue variability

Factors contributing to the longitudinal development of social participation in individuals with cerebral palsy

Aims We aimed to determine factors associated with the longitudinal development of social participation in a Dutch population of individuals with Cerebral Palsy (CP) aged 1–24 years. Methods and procedures For this multicentre prospective longitudinal study, 424 individuals with CP aged 1–24 years were recruited from various rehabilitation centers in The Netherlands. Social participation was measured with the Vineland Adaptive Behavior Scales. We assessed associations with age, intellectual impairment, level of gross motor function, gender, type of CP, manual ability, epilepsy, hearing-, visual-, speech impairment and pain, internalizing- and externalizing behavioral problems, type of education and parental level of education. Each individual was measured 3 or 4 times. The time between measurements was 1 or 2 years. Outcomes and results Epilepsy and speech impairment were each independently associated with the longitudinal development of social participation. The effects were rather small and did not change with age. Also, a trend was found that children attending special education develop less favorably in social participation. Conclusions and implications Our results might provide parents and caregivers with starting points to further develop tailored support for individuals with epilepsy, with speech impairment and/or attending special education at risk for suboptimal social participation

Outcomes in adults with cerebral palsy: systematic review using the International Classification of Functioning, Disability and Health

Aim In the context of the development of an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with cerebral palsy (CP), this systematic review sought to identify the outcome measures used in studies on adults with CP, to examine their content using the ICF as a reference, and to demonstrate the most studied areas in this population. Method Embase, MEDLINE, Web of Science, PsycINFO, CINAHL, Cochrane, and Google Scholar were searched for studies on adults with CP published between 2000 and 2017. Meaningful concepts of commonly used outcome measures were linked to the ICF, and frequencies of resultant ICF categories were explored. Results In 274 included articles, 332 outcome measures were identified of which 155 were commonly used. In total, 4409 meaningful concepts were linked to the ICF. The component 'Activities and participation' included the most frequent categories, followed by 'Body functions'. The most frequent categories were b280 'Sensation of pain' (37.6%), d450 'Walking' (33.3%), and d850 'Remunerative employment' (27.5%). Interpretation The broad range of ICF categories identified in this systematic review emphasizes the heterogeneity of functioning and disability in adults with CP. The current results specifically reflect the researchers' perspective and will serve as candidate categories to consider in the development of an ICF Core Set for adults with CP. What this paper addsOutcomes studied in adults with cerebral palsy are captured in varying International Classification of Functioning, Disability and Health (ICF) categories. Activities and participation were studied more frequently than body functions and structures. Mobility, employment, and self-care were most frequent within ICF's 'Activities and participation' component. Pain and neuromusculoskeletal and movement-related functions were most frequent within 'Body functions'

Detection of body postures and movements in ambulatory adults with cerebral palsy: a novel and valid measure of physical behaviour

Background: Accurate measurement of physical behaviour is paramount to better understand lifestyle, health, and functioning, particularly in adults with physical disability as they may be at higher risk of sedentary lifestyle and subsequent negative health consequences. This study aimed: 1) to evaluate the criterion validity of a novel and clinically applicable activity monitor (AM, Activ8), in the detection of body postures and movements in adults with spastic cerebral palsy (CP); and 2) to evaluate the extent that the AM's positioning affects validity.Methods: In this cross-sectional study, 14 ambulatory adults with CP [9 men; mean (SD) age, 35.4 (13.1) years] performed standardized activities while wearing three Activ8 monitors - frontolateral thigh (primary position), frontal thigh, and pant pocket - and being video recorded (criterion measure). AM activity output was compared to synchronized video recordings. Absolute (seconds) and relative [(video time-AM time)/mean time, %] time differences between methods were calculated. Relative time differences of < 10% were indicative of good validity. Comparison of AM attachment positions was completed using Spearman Rho correlation coefficients and Meng's tests.Results: Criterion validity of the AM (frontolateral thigh) was good (average relative time differences: 0.25% for sitting, 4.69% for standing, 2.46% for walking, 1.96% for upright activity, 3.19% for cycling), except for running (34.6%). Spearman Rho correlation coefficients were greater between video/frontolateral thigh position than video/frontal thigh position and video/pant pocket position for body posture and movement categories sitting, standing, walking, and upright activity (p < 0.01 for all).Conclusions: The AM, positioned on the frontolateral thigh, demonstrated good criterion validity in ambulatory adults with CP. Though the Activ8 offers potential as an objective measure of physical activity, appropriate positioning is paramount for valid measurement