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

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® 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.Implications for rehabilitationExcept for those in the highest level of motor function, young adults with cerebral palsy report higher levels of pain and fatigue compared to the general population of the same age.Pain and fatigue are strongly interrelated and associated with mental health in young adults with cerebral palsy.The present study recommends to monitor pain and fatigue in young adults with cerebral palsy with low levels of gross motor function.We advise rehabilitation professionals to consider combined treatment for both pain and fatigue.

Childhood factors predict participation of young adults with cerebral palsy in domestic life and interpersonal relationships: a prospective cohort study.

Purpose: To determine childhood predictors of participation in domestic life and interpersonal relationships of young adults with cerebral palsy (CP).Materials and methods: This 13-year follow-up of an existing cohort (baseline age 9-13 years) included 67 young adults with CP (age 21-27 years). The Vineland adaptive behavior scales (VABS) and Life Habits questionnaire were used to assess attendance and difficulty in participation in domestic life and interpersonal relationships. Baseline factors were categorised according to the international classification of functioning, disability, and health. Stepwise multiple linear regression analyses determined significant predictors (p < 0.05).Results: Lower manual ability, intellectual disability (ID), epilepsy and lower motor capacity predicted decreased future participation in domestic life, and/or interpersonal relationships (explained variance R2 = 67-87%), whereas no association was found with environmental and personal factors. Extending models with baseline fine motor skills, communication, and interpersonal relationships increased R2 to 79-90%.Conclusions: Childhood factors account for 79-90% of the variation in young adult participation in domestic life and interpersonal relationships of individuals with CP. Children with limited motor capacity, low manual ability, ID, or epilepsy are at risk for restrictions in participation in young adulthood. Addressing fine motor, communication, and social skills in paediatric rehabilitation might promote young adult participation.Implications for rehabilitationChildhood risk factors for limited participation in domestic life and interpersonal relationships as a young adult with CP are ID, epilepsy, low manual ability, low motor capacity, and low activity & participation levels.In line with current practice, this study confirms the importance of addressing gross and fine motor skills in children with CP for their future participation in domestic life.In addition, results suggest that addressing communication and social skills during paediatric rehabilitation may optimise future participation in interpersonal relationships.

Teenage predictors of participation of adults with cerebral palsy in domestic life and interpersonal relationships: A 13-year follow-up study.

BACKGROUND: Adults with cerebral palsy (CP) may experience problems with participation in domestic life and interpersonal relationships. AIMS: To identify teenage predictors of adult participation in domestic life and interpersonal relationships. METHODS AND PROCEDURES: This 13-year follow-up of the PERRIN 16-24 cohort included 53 adults with CP without intellectual disability [current age 31.7 (SD = 1.4) years]. Participation performance was assessed as attendance (Vineland Adaptive Behavior Scales), and difficulty/assistance with participation (Life Habits questionnaire). 56 teenage factors were categorized in ICF components. Stepwise multiple linear regression analyses explored predictors of participation. OUTCOMES AND RESULTS: Lower gross motor capacity, following special education, having protective parents and a rigid personality predicted less participation in domestic life. Having rejective parents, receiving little daily support, having a socially avoidant personality or coping style and the male gender predicted less participation in interpersonal relationships. Lower activity and participation levels as a teenager predicted less participation in both domestic life and interpersonal relationships of adults with CP. CONCLUSIONS AND IMPLICATIONS: Environmental and personal factors, gross motor capacity and teenage participation were predictors of participation of adults with CP. These factors help identify subgroups at risk for suboptimal adult participation and provide targets for rehabilitation.

Autonomy in participation in cerebral palsy from childhood to adulthood.

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 (p<0.05). RESULTS: In most domains, over 90% of participants (n=189, 400 observations, 80% in GMFCS levels I and II) reached autonomy in participation in their late twenties, except for intimate/sexual relationships. Those in GMFCS levels III to V compared to those in GMFCS levels I and II had less favourable development of autonomy in the transportation, intimate relationships, employment, and housing domains, and more favourable development in the finances domain. Compared to references, fewer individuals with CP were autonomous in participation. INTERPRETATION: This knowledge of autonomy may guide the expectations of young people with CP and their caregivers. Furthermore, rehabilitation professionals should address autonomy development in intimate relationships, employment, and housing, especially in individuals with lower gross motor function. WHAT THIS PAPER ADDS: Individuals 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.

AUTONOMÍA EN LA PARTICIPACIÓN EN LA PARÁLISIS CEREBRAL DESDE LA INFANCIA A LA EDAD ADULTA: OBJETIVO: Determinar el desarrollo a largo plazo de la autonomía en la participación de individuos con parálisis cerebral (PC) sin discapacidad intelectual. MÉTODO: Individuos con PC (n=189, 117 varones, 72 mujeres; edad media [DE] 21 años y 11 meses [4 años y 11meses], rango 12-34 años); fueron evaluados de forma transversal (46%) o hasta cuatro veces (54%), entre las edades comprendidas entre los 12 y los 34 años. La autonomía en la participación fue clasificada usando la fase 3 del perfil de transición de Rotterdam (Rotterdam Transition Profile). Se utilizó un modelo de regresión logístico generalizado estimando la ecuación para analizar la autonomía en 6 dominios (variables independientes: edad, nivel del Sistema de Clasificación de la Función Motora Gruesa, [GMFCS], y la interacción entre la edad y el nivel GMFCS). Las proporciones de la autonomía se compararon con las referencias mediante pruebas binomiales (p<0,05). RESULTADOS: En la mayoría de los dominios, más del 90% de los participantes (n=189.400 observaciones, 80% en los niveles I y II de la GMFCS) alcanzaron la autonomía en la participación bien entrados los 20 años, excepto para las relaciones íntimas/sexuales. Aquellos en los niveles III y V de la GMFCS en comparación con los niveles I y II de la GMFCS tuvieron un desarrollo de la autonomía menos favorable en el transporte, relaciones íntimas, empleo y en el dominio de la vivienda, y un desarrollo más favorable en el dominio de las finanzas. En comparación con las referencias, menos individuos con PC fueron autónomos en la participación. INTERPRETACIÓN: Este conocimiento de la autonomía puede guiar las expectativas de los jóvenes con PC y de sus cuidadores. Además, los profesionales de la rehabilitación deberían abordar el desarrollo de la autonomía en las relaciones íntimas, el empleo y la vivienda, especialmente en aquellos individuos con una función motora gruesa más baja.

AUTONOMIA NA PARTICIPAÇÃO EM PARALISIA CEREBRAL DA INFÂNCIA À VIDA ADULTA: OBJETIVO: Determinar o desenvolvimento em longo prazo da autonomia na participação de indivíduos com paralisia cerebral (PC) sem deficiência intelectual. MÉTODO: Indivíduos com PC (n=189, 117 do sexo masculino, 72 do sexo feminino; média de idade [DP] 21a 11m [4a 11m], variação 12-34a); foram avaliados transversalmente (46%) ou até quatro vezes (54%), entre as idades de 12 e 34 anos. A autonomia na participação foi classificada usando a fase 3 do Perfil de Transição de Rotterdam. Um modelo de regressão logística com generalizada com equações estimadas foi usado para analisar a autonomia em seis domínios (variáveis independentes: idade, Nível segundo o Sistema de Classificação da Função Motora Grossa [GMFCS], e interação entre idade e nível GMFCS). As proporções de autonomia foram comparadas com as referências usando testes binomiais (p<0,05). RESULTADOS: Na maior parte dos domínios, cerca de 90% dos participantes (n=189.400 observações, 80% nos níveis GMFCS I e II) atingiram autonomia na participação no final da terceira década de vida, exceto para relações íntimas/sexuais. Aqueles nos níveis GMFCS III a V comparados com os níveis I e II tiveram desenvolvimento menos favorável nos domínios da autonomia no transporte, relações íntimas, emprego, e domicílio, e mais desenvolvimento mais favorável no domínio das finanças. Em comparação com as referências, menos indivíduos com PC foram autônomos na participação. INTERPRETAÇÃO: Este conhecimento sobre a autonomia pode guiar as expectativas de jovens com PC e seus cuidadores. Além disso, profissionais da reabilitação devem abordar o desenvolvimento da autonomia nas relações íntimas, emprego e domicílio, especialmente nos indivíduos com menor função motora grossa.

Mobility and self-care trajectories for individuals with cerebral palsy (aged 1-21 years): a joint longitudinal analysis of cohort data from the Netherlands and Canada.

BACKGROUND: A good understanding of developmental trajectories is crucial for making prognoses, planning interventions, and monitoring progress in children and adolescents with cerebral palsy. Our study aimed to describe developmental trajectories of mobility and self-care capability in a large sample of children and adolescents with cerebral palsy from the Netherlands and Canada. METHODS: We did longitudinal data analyses of cohorts from the Netherlands (Pediatric Rehabilitation Research in the Netherlands; PERRIN) and Ontario, Canada (Adolescent Study of Quality of Life, Mobility, and Exercise; ASQME). All participants had a confirmed diagnosis of cerebral palsy and ranged in age from 1 year to 17 years at baseline, and were recruited from rehabilitation centres and university medical centres. Individuals diagnosed with additional conditions affecting motor function other than cerebral palsy (eg, spina bifida or muscle diseases) were excluded. After baseline assessment, up to three follow-up assessments were done at 1 year intervals. The whole spectrum of severity of cerebral palsy was represented in terms of motor function, using the Gross Motor Function Classification System (GMFCS). Mobility and self-care capability were assessed with the Pediatric Evaluation of Disability Inventory (PEDI). We applied non-linear mixed-effects modelling to estimate limits, rates, and variations of development. FINDINGS: For both projects, recruitment took place between 2002 and 2007. The combined dataset included 551 individuals with cerebral palsy (321 individuals from the PERRIN programme and 230 from ASQME), aged 1 year to 17 years at baseline, with longitudinal data available for up to 4 years. On the basis of a total of 1754 PEDI observations, we created developmental curves for ages 1-21 years. Both for mobility and self-care, limits and rates of development differed among individuals across GMFCS levels, resulting in distinct curves. For individuals classified as being in GMFCS level I, the estimated mean limit for mobility and self-care were both higher than 90 (95·6, 95% CI 94·5-96·7 for mobility and 91·8, 90·1-93·4 for self-care), indicating capability for most if not all items on the PEDI. By comparison, the estimated mean limits for children in levels II-V varied from 83·0 (80·3-85·7) to 23·6 (20·7-26·4), with increasing limitations in mobility and self-care capability for higher GMFCS levels. Individuals with lower GMFCS levels (ie, less severe cerebral palsy) showed higher developmental limits that were reached during a longer period of development. However, among individuals within the same GMFCS level, we found substantial interindividual variation in development for mobility, and even more so for self-care. INTERPRETATION: Prognosis for mobility and self-care capability can largely be based on developmental trajectories for children and adolescents with cerebral palsy grouped by GMFCS level. The interindividual variation in development within GMFCS levels indicates that, in addition to GMFCS level, other contextual factors need to be considered when discussing prognosis and management. Using the curves for individuals with cerebral palsy aged 1 year to 21 years, we illustrate how this new knowledge can be applied in paediatric practice. FUNDING: The Netherlands Organisation for Health Research and Development and the Canadian Institutes of Health Research.

Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: a prospective cohort study.

AIM: To determine the long-term course of difficulty in participation of individuals with cerebral palsy (CP) without intellectual disability between 16 years and 34 years of age. METHOD: One hundred and fifty-one individuals with CP aged 16 to 20 years were included (63% male, 37% female; Gross Motor Function Classification System [GMFCS] levels I-IV; without intellectual disability). The Assessment of Life Habits questionnaire 3.0 general short form was used up to three times biennially and at 13-year follow-up (13-year follow-up: n=98). Scores (range 0-10) reflect difficulty and assistance in participation in housing, education and employment, interpersonal relationships, recreation, community life, and responsibilities. Multilevel models were used to determine the course of difficulty in participation by GMFCS level. RESULTS: Despite high average participation levels, 41% to 95% of adolescents and young adults with CP experienced difficulty. Difficulty in participation in housing and interpersonal relationships increased from age 16 years onwards and in most other life areas in the mid- and late 20s. In adolescents in GMFCS levels III and IV, participation in recreation and community life improved up to age 23 years. INTERPRETATION: Individuals with CP experience increasing difficulties in participation in their mid- and late 20s. Clinicians should systematically check for participation difficulties in young adults with CP and offer timely personalized treatment. WHAT THIS PAPER ADDS: Many individuals with cerebral palsy (CP) aged 16 to 34 years experience difficulty in participation. Difficulty in participation increases in the mid- and late 20s for individuals with CP. Participation in recreation/community life improves before age 23 years for those in Gross Motor Function Classification System levels III and IV.

Perspectives of Dutch Physiotherapists on Self-Management Support: A Q-Methodology Study.

Self-management support programs are reported to have positive effects on the health and care of people with physical disabilities. It is unclear how physiotherapists (PTs) view self-management support. A cross-sectional study with mixed-methods design using Q-methodology was conducted to determine the perspectives of Dutch PTs on self-management support. PTs (n = 39) rank-ordered 37 validated statements about self-management support from "most disagree (-3)" to "most agree (+3)." Differences in perspectives on self-management support were explored in a by-person centroid factor analysis on the basis of the explained variance (R2). After having sorted the statements, PTs explained their ranking of -3 and +3 statements in semi-structured interviews. All PTs recognized self-management support as intrinsic part of physiotherapy practice. Nevertheless, four particular perspectives could be identified: (1) the "externally driven educator" (R2 = 14%), (2) "internally driven educator" (R2 = 9%), (3) "client-centered coach" (R2 = 13%), and (4) "client-initiated coach" perspective (R2 = 15%). Each perspective reflects particular goals and perceptions of self-management support. Differences were identified with respect to the PTs' role perception (educating or coaching), drive (external or internal), and collaboration with the patient (as partner or not). The identified perspectives can be used in the physiotherapy education curriculum to create awareness about the various ways of practicing self-management support and the skills needed to be able to tailor support to patient needs and to switch between perspectives.

Participation in Social Roles of Adolescents With Cerebral Palsy: Exploring Accomplishment and Satisfaction.

OBJECTIVE: To explore participation in social roles of adolescents (aged 12-18y) with cerebral palsy (CP), in terms of satisfaction compared with accomplishment. DESIGN: Cohort study as part of a prospective longitudinal research program. SETTING: Clinic. PARTICIPANTS: Participants were adolescents (N=45; 58% male, mean age 15y 6mo) with CP at levels I-II (88%) and III-IV-V (12%) of the Gross Motor Function Classification System. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Accomplishment (0-9 scale; with score <8 "having difficulties") and satisfaction (1-5 scale; with score 3 "neutral") were assessed using the Life-Habits questionnaire, on 6 domains (Responsibilities, Interpersonal relationships, Community life, Education, Employment, Recreation). Per domain, we analyzed scatterplots of accomplishment vs satisfaction. Additionally, we compared determinant-models (including factors of CP, activity, person, and environment) using regression analysis. RESULTS: For accomplishment, mean scores were <8.00 except for Interpersonal relationships. For satisfaction, mean scores varied between 3.85 and 4.34. Overall, individuals with similar levels of accomplishment showed large ranges in their levels of satisfaction, which was expressed by low explained variances, especially on Education (6%). Furthermore, different sets of determinants were found for accomplishment (predominantly CP factors) compared with satisfaction (predominantly environment factors). CONCLUSIONS: This study revealed a dissociation between participation accomplishment and satisfaction with participation among adolescents with CP. For practice and research, we recommend not only to focus on accomplishment but also, if not mainly, on satisfaction.

Evidence for increasing physical activity in children with physical disabilities: a systematic review.

AIM: To summarize the best evidence of interventions for increasing physical activity in children with physical disabilities. METHOD: A systematic review was conducted using an electronic search executed in Academic Search Elite, Academic Search Premier, CINAHL, Embase, MEDLINE, PEDro, PsychINFO, and SPORTDiscus up to February 2016. The selection of articles was performed independently by two researchers according to predetermined eligibility criteria. Data extraction, methodological quality, and levels of evidence were independently assessed by two researchers using a data-collection form from the Cochrane Collaboration and according to the guidelines of the American Academy for Cerebral Palsy and Developmental Medicine. RESULTS: Seven studies were included. Five randomized controlled trials ranged from strong level I to weak level II studies, and two pre-post design studies were classified as level IV. There is level I evidence for no effect of physical training on objectively measured physical activity, conflicting level II evidence for interventions with a behavioural component on the increase of objectively measured physical activity directly after the intervention, and level II evidence for no effect during follow-up. Results are limited to children with cerebral palsy as no other diagnoses were included. INTERPRETATION: Increasing physical activity in children with physical disabilities is very complex and demands further development and research.

Longitudinal Relationship Among Physical Fitness, Walking-Related Physical Activity, and Fatigue in Children With Cerebral Palsy.

BACKGROUND: A vicious circle of decreased physical fitness, early fatigue, and low physical activity levels (PAL) is thought to affect children with cerebral palsy (CP). However, the relationship of changes in physical fitness to changes in PAL and fatigue is unclear. OBJECTIVE: The objective of this study was to investigate the associations among changes in physical fitness, walking-related PAL, and fatigue in children with CP. DESIGN: This study was a secondary analysis of a randomized controlled trial with measurements at baseline, 6 months (after the intervention period), and 12 months. METHODS: Twenty-four children with bilateral spastic CP and 22 with unilateral spastic CP, aged 7 to 13 years, all walking, participated in this study. Physical fitness was measured by aerobic capacity, anaerobic threshold, anaerobic capacity, and isometric and functional muscle strength. Walking-related PAL was measured using an ankle-worn activity monitor for 1 week. Fatigue was determined with the Pediatric Quality of Life (PedsQL) Multidimensional Fatigue Scale. Longitudinal associations were analyzed by random coefficient regression analysis. RESULTS: In children with bilateral CP, all fitness parameters showed a positive, significant association with walking-related PAL, whereas no associations between physical fitness and walking-related PAL were seen in children with unilateral CP. No clinically relevant association between physical fitness and fatigue was found. LIMITATIONS: Although random coefficient regression analysis can be used to investigate longitudinal associations between parameters, a causal relationship cannot be determined. The actual direction of the association between physical fitness and walking-related PAL, therefore, remains inconclusive. CONCLUSIONS: Children with bilateral spastic CP might benefit from improved physical fitness to increase their PAL or vice versa, although this is not the case in children with unilateral CP. There appears to be no relationship between physical fitness and self-reported fatigue in children with CP. Interventions aimed at improving PAL may be differently targeted in children with either bilateral or unilateral CP.

Associations between fitness and mobility capacity in school-aged children with cerebral palsy: a longitudinal analysis.

AIM: The aim of this study was to determine the longitudinal associations among fitness components and between fitness and mobility capacity in children with cerebral palsy (CP). METHOD: Forty-six children (26 males, 20 females; mean age 9y 7mo [SD 1y 8mo]) with a bilateral (n=24) or a unilateral spastic CP (n=22) participated in aerobic and anaerobic fitness measurements on a cycle ergometer and isometric muscle strength tests (Gross Motor Function Classification System [GMFCS] level I [n=26], level II [n=12], level III [n=8]). Mobility capacity was assessed with the gross motor function measure (GMFM) and a walking capacity test. Associations over longitudinal measurements (three or four measurements over 1y) were determined since longitudinal data allow a more accurate estimation. The associations were determined using a mixed model with fixed effects (mobility capacity as dependent variables and fitness components as independent variables) and a random intercept. RESULTS: In children with bilateral CP, changes in aerobic fitness were associated with changes in anaerobic fitness (p<0.001), and changes in aerobic fitness showed an association with changes in muscle strength (p<0.05). Anaerobic fitness was not associated with muscle strength. No associations between fitness components were found in unilateral CP. Anaerobic fitness and muscle strength were significant determinants for GMFM and walking capacity in bilateral but not in unilateral CP. INTERPRETATION: The longitudinal associations between aerobic and anaerobic fitness and mobility indicate that increasing either aerobic or anaerobic fitness is associated with improvements in mobility in children with bilateral CP. While increasing anaerobic fitness might be beneficial for mobility capacity in children with bilateral CP, this is less likely for children with unilateral CP.

Physical activity stimulation program for children with cerebral palsy did not improve physical activity: a randomised trial.

QUESTION: In children with cerebral palsy, does a 6-month physical activity stimulation program improve physical activity, mobility capacity, fitness, fatigue and attitude towards sports more than usual paediatric physiotherapy? DESIGN: Multicentre randomised controlled trial with concealed allocation, blinded assessments and intention-to-treat analysis. PARTICIPANTS: Forty-nine walking children (28 males) aged 7-13 years with spastic cerebral palsy and severity of the disability classified as Gross Motor Function Classification System level I-III. INTERVENTION: The intervention group followed a 6-month physical activity stimulation program involving counselling through motivational interviewing, home-based physiotherapy, and 4 months of fitness training. The control group continued their usual paediatric physiotherapy. OUTCOME MEASURES: Primary outcomes were walking activity (assessed objectively with an activity monitor) and parent-reported physical activity (Activity QUESTIONnaire for Adults and Adolescents). Secondary outcomes were: mobility capacity, consisting of Gross Motor Function Measure-66 (GMFM-66), walking capacity and functional strength, fitness (aerobic and anaerobic capacity, muscle strength), self-reported fatigue, and attitude towards sport (child and parent). Assessments were performed at baseline, 4 months, 6 months and 12 months. RESULTS: There were no significant intervention effects for physical activity or secondary outcomes at any assessment time. Positive trends were found for parent-reported time at moderate-to-vigorous intensity (between-group change ratio=2.2, 95% CI 1.1 to 4.4) and GMFM-66 (mean between-group difference=2.8 points, 95% CI 0.2 to 5.4) at 6 months, but not at 12 months. There was a trend for a small, but clinically irrelevant, improvement in the children's attitudes towards the disadvantages of sports at 6 months, and towards the advantages of sports at 12 months. CONCLUSIONS: This physical activity stimulation program, that combined fitness training, counselling and home-based therapy, was not effective in children with cerebral palsy. Further research should examine the potential of each component of the intervention for improving physical activity in this population. TRIAL REGISTRATION: NTR2099.

Walking activity of children with cerebral palsy and children developing typically: a comparison between the Netherlands and the United States.

PURPOSE: To compare walking activity of children with and without cerebral palsy (CP) between the Netherlands and the United States. METHODS: A cross-sectional analysis on walking activity data from an international retrospective comparison study including a convenience sample of 134 walking children aged 7-12 years with spastic CP, classified as Gross Motor Function Classification System (GMFCS) level I (N = 64), II (N = 49) or III (N = 21), and 223 typically developing children (TDC) from the Netherlands and the United States. Walking activity was assessed during a one-week period using a StepWatch™ activity monitor. Outcomes were the daily number of strides, daily time being inactive and spent at low (0-15 strides/min), moderate (16-30 strides/min) and high stride rate (31-60 strides/min). Walking activity was compared between countries using multiple linear regression analyses. RESULTS: Walking activity of TDC was not significantly different between countries. Compared to their American counterparts, Dutch children in GMFCS level I and II showed less walking activity (p < 0.05), whereas Dutch children in GMFCS level III showed more walking activity (p < 0.05). CONCLUSION: The absence of differences in walking activity between Dutch and American TDC, and the presence of differences in walking activity between Dutch and American children with CP suggest that between-country differences affect walking activity differently in children with CP. IMPLICATIONS FOR REHABILITATION: Physical activity of children with CP should be promoted in both the United States and the Netherlands. The between-country differences in walking activity illustrate that apart from the severity of the CP walking activity seems to be influenced by environmental aspects. In the promotion of physical activity, practitioners should pay attention to environmental barriers that families may experience for increasing physical activity.

Daily stride rate activity and heart rate response in children with cerebral palsy.

OBJECTIVE: To compare daily stride rate activity, daily exercise intensity, and heart rate intensity of stride rate in children with cerebral palsy with that of typically developing children. METHODS: Forty-three children with cerebral palsy, walking without (Gross Motor Function Classification System (GMFCS) I and II) or with (GMFCS III) an aid and 27 typically developing children (age range 7-14 years) wore a StepWatch™ activity monitor and a heart rate monitor. Time spent and mean heart rate reserve at each stride rate activity level and time spent in each mean heart rate reserve zone was compared. RESULTS: Daily stride rate activity was lower in children with cerebral palsy (39%, 49% and 79% in GMFCS I, II and III, respectively) compared with typically developing children (p < 0.05), while there were no differences in time spent at different mean heart rate reserve zones. Mean heart rate reserve at all stride rate activity levels was not different between typically developing children, GMFCS I and II, while mean heart rate reserve was higher for GFMCS III at stride rates < 30 strides/min (p < 0.05). CONCLUSION: Stride rate activity levels reflect the effort of walking, in children with cerebral palsy who are walking without aids, similar to that of typically developing, whereas children with cerebral palsy using walking aids show higher effort of walking. Despite a lower stride rate activity in cerebral palsy, daily exercise intensity seems comparable, indicating that the StepWatch™ monitor and the heart rate monitor measure different aspects of physical activity.

The effectiveness of a physical activity stimulation programme for children with cerebral palsy on social participation, self-perception and quality of life: a randomized controlled trial.

OBJECTIVE: To determine the effects of a six-month physical activity stimulation programme on social participation, self-perception and quality of life in children with cerebral palsy. DESIGN: Multicentre randomized controlled trial with concealed allocation, blinded assessments and intention-to-treat analysis. SETTING: Paediatric physiotherapy practices, special schools for children with a disability, and the child's own home. SUBJECTS: Forty-nine children with spastic cerebral palsy (28 male), aged 7-13 years, able to walk with and without walking aids. INTERVENTIONS: The intervention group followed a six-month physical activity stimulation programme involving counselling through motivational interviewing, home-based physiotherapy and four months of fitness training. The control group continued regular paediatric physiotherapy. MAIN MEASURES: Outcomes included social participation in domestic life, social participation in recreation and leisure (Life-Habits for Children questionnaire and Children's Assessment of Participation and Enjoyment questionnaire), self-perception (Harter's Self-Perception Profile for Children) and parent-reported quality of life (Cerebral Palsy Quality of Life Questionnaire). Assessments were performed at baseline, at six months (except quality of life) and at twelve months. RESULTS: Intervention resulted in a positive effect on social participation in domestic life at twelve months (mean between-group difference = 0.9, 95% confidence interval (CI) = 0.1 to 1.7 [1-10 scale], P = 0.03), but not at six months. No significant effects were found for social participation in recreation and leisure, self-perception at six months and twelve months or for quality of life at twelve months. CONCLUSIONS: The combination of counselling, home-based physiotherapy and fitness training was not effective in improving social participation in recreation and leisure, self-perception or quality of life, but did show a potential for improving social participation in domestic life over the longer term.

Maximal aerobic and anaerobic exercise responses in children with cerebral palsy.

PURPOSE: The objective of this study is to compare the maximal aerobic and anaerobic exercise responses of children with cerebral palsy (CP) by level of motor impairment and in comparison with those of typically developing children (TD). METHODS: Seventy children with CP, with varying levels of motor impairment (Gross Motor Function Classification System (GMFCS) I-III), and 31 TD performed an incremental continuous maximal aerobic exercise test and a 20-s anaerobic Wingate test on a cycle ergometer. Peak oxygen uptake (V˙O2peak), anaerobic threshold (AT), peak ventilation (V˙Epeak), peak oxygen pulse (peak O2 pulse), peak ventilatory equivalent of oxygen (peak V˙E/V˙O2) and carbon dioxide (peak V˙E/V˙CO2), peak aerobic power output (POpeak), and mean anaerobic power (P20mean) were measured. Isometric leg muscle strength was determined as a secondary outcome. RESULTS: Analysis revealed a lower V˙O2peak for CP (I: 35.5 ± 1.2 (SE); II: 33.9 ± 1.6; III: 29.3 ± 2.5 mL·kg-1·min-1) compared with TD (41.0 ± 1.3, P < 0.001) and a similar effect for AT (I: 19.4 ± 0.9; II: 19.2 ± 1.2; III: 15.5 ± 1.9; TD: 24.1 ± 1.0 mL·kg-1·min-1, P < 0.001). V˙Epeak and peak O2 pulse were also lower, whereas peak V˙E/V˙CO2 was higher in CP compared with TD (P < 0.05) and peak V˙E/V˙O2 similar between groups. All these variables showed no differences for different motor impairment levels. POpeak was lower for CP (I: 2.4 ± 0.1; II: 1.8 ± 0.1; III: 1.4 ± 0.2 W·kg-1) versus TD (3.0 ± 0.1, P < 0.001), together with a lower P20mean in CP (I: 4.6 ± 0.2; II: 3.3 ± 0.2; III: 2.5 ± 0.4 W·kg-1) versus TD (6.4 ± 0.2, P < 0.001), and both decreased significantly with increasing motor impairment. CONCLUSION: Children with CP have decreased aerobic and anaerobic exercise responses, but decreases in respiratory and aerobic exercise responses were not as severe as predicted by motor impairment. Future research should reveal the role of inactivity on the exercise responses of children with CP and possibilities for improvement through training interventions.

Ambulatory activity of children with cerebral palsy: which characteristics are important?

AIM: To assess ambulatory activity of children with cerebral palsy (CP), aged 7 to 13 years, and identify associated characteristics. METHOD: Sixty-two children with spastic CP (39 males, 23 females; mean age 10y 1mo, SD 1y 8mo; age range 7-13y), classified as Gross Motor Function Classification System (GMFCS) levels I to III, participated. Ambulatory activity was measured during 1 week with a StepWatch activity monitor as steps per day, and time spent at medium and high step rates. Multiple linear regression analyses were performed following a backward selection procedure until only independent variables with p<0.05 remained in the model. Ambulatory activity outcome parameters served as dependent variables, and disease, personal, and environmental characteristics as independent variables. Ambulatory activity was corrected for body height. RESULTS: Children took more steps during school days (5169 steps, SD 1641) than during weekend days (4158 steps, SD 2048; p<0.001). Higher GMFCS level, bilateral CP, and higher age were associated with lower ambulatory activity on school days (R(2) ranged from 43-53%), whereas bilateral CP, higher age, and no sport club participation were associated with lower ambulatory activity in the weekend (R(2) ranged from 21-42%). Correcting for body height decreased the association with age. INTERPRETATION: Interventions should focus at increasing physical activity at the weekend for children with bilateral spastic CP.

LEARN 2 MOVE 7-12 years: a randomized controlled trial on the effects of a physical activity stimulation program in children with cerebral palsy.

BACKGROUND: Regular participation in physical activities is important for all children to stay fit and healthy. Children with cerebral palsy have reduced levels of physical activity, compared to typically developing children. The aim of the LEARN 2 MOVE 7-12 study is to improve physical activity by means of a physical activity stimulation program, consisting of a lifestyle intervention and a fitness training program. METHODS/DESIGN: This study will be a 6-month single-blinded randomized controlled trial with a 6-month follow up. Fifty children with spastic cerebral palsy, aged 7 to 12 years, with Gross Motor Function Classification System levels I-III, will be recruited in pediatric physiotherapy practices and special schools for children with disabilities. The children will be randomly assigned to either the intervention group or control group. The children in the control group will continue with their regular pediatric physiotherapy, and the children in the intervention group will participate in a 6-month physical activity stimulation program. The physical activity stimulation program consists of a 6-month lifestyle intervention, in combination with a 4-month fitness training program. The lifestyle intervention includes counseling the child and the parents to adopt an active lifestyle through Motivational Interviewing, and home-based physiotherapy to practise mobility-related activities in the daily situation. Data will be collected just before the start of the intervention (T0), after the 4-month fitness training program (T4), after the 6-month lifestyle intervention (T6), and after six months of follow-up (T12). Primary outcomes are physical activity, measured with the StepWatch Activity Monitor and with self-reports. Secondary outcomes are fitness, capacity of mobility, social participation and health-related quality of life. A random coefficient analysis will be performed to determine differences in treatment effect between the control group and the intervention group, with primary outcomes and secondary outcomes as the dependent variables. DISCUSSION: This is the first study that investigates the effect of a combined lifestyle intervention and fitness training on physical activity. Temporary effects of the fitness training are expected to be maintained by changes to an active lifestyle in daily life and in the home situation. TRIAL REGISTRATION: This study is registered in the Dutch Trial Register as NTR2099.