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 (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

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 rehabilitation Except 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

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

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods/Design</p> <p>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.</p> <p>Discussion</p> <p>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.</p> <p>Trial registration</p> <p>This study is registered in the Dutch Trial Register as NTR2099.</p

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

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

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 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

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

ABSTRACT 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