The Impact of Frame Running on Quality of Life in Young Athletes With Mobility Limitations.

Purpose: The para-athletic sport Frame Running is developed for persons with neurological impairments causing severe limitations of walking ability. Participating in sports can contribute to a better quality of life (QoL). It is unknown if participation in Frame Running contributes to QoL in children with mobility limitations. This study aims to explore the changes in QoL in children and youth who started Frame Running. Materials and Methods: We conducted a cross-sectional study amongst young Frame Running athletes with mobility limitations due to various underlying causes, aged 6-19 years, who are members of one of the Frame Running groups in the Netherlands. For 62 athletes, parents completed the Psychosocial Impact of Assistive Devices Scale (PIADS) questionnaire (subscales: competence, adaptability, and self-esteem). For six athletes, parents were interviewed to obtain more in-depth insight in the perceived changes in the QoL of their children. Results: Parents (of 58% boys, mean age 12 years 4 months; SD 3 years 3 months; 52% supported walkers) reported a significant positive change on all three subscales of the PIADS questionnaire since their children started Frame Running. Most change was experienced in the items performance, the ability to participate, happiness and self-confidence. Quotes of the parents who were interviewed elucidated these changes. Conclusion: Frame Running increased QoL in young athletes with a mobility limitation. Frame Running may therefore be advised for these children and youth to improve QoL.

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.

Abnormal Foot Position and Standing and Walking Ability in Rett Syndrome: an Exploratory Study.

This study aimed to determine whether there is a relationship between abnormal foot position and standing and walking ability in individuals with Rett syndrome (RTT), a rare neurological condition primarily affecting females, often accompanied by impaired gross motor function and musculoskeletal deformities. Through means of an online survey, physiotherapists were asked to share information about their work and experience with individuals with RTT. They were asked about their clients' scores on the Rett Syndrome Gross Motor Scale and measures of their foot deformity, passive range of motion of dorsiflexion of the foot, use of supportive footwear, pressure load on the foot, and symmetry in weight bearing. 45 physiotherapists gave answers relating to 67 individuals with RTT who ranged in age from 2 to over 50 years. Almost 80% had an abnormal foot position which required support of special shoes or orthoses. Approximately 55% experienced abnormal pressure load on the foot and 65% demonstrated asymmetrical weight-bearing; 22% could sit independently and 17% were able to stand and walk independently. Of all the variables investigated, only abnormal distribution of pressure on the foot and asymmetry in weight bearing through the legs were found to be (negatively) correlated with standing and walking ability. Physiotherapists can use this information to give advice on othopedic support for the feet of individuals with RTT.

Longitudinal Association Between Gross Motor Capacity and Neuromusculoskeletal Function in Children and Youth With Cerebral Palsy.

OBJECTIVE: To examine associations over longitudinal measurements between neuromusculoskeletal function and gross motor capacity in children and youth with cerebral palsy (CP). DESIGN: A prospective cohort study. SETTING: Rehabilitation departments of university medical centers and rehabilitations centers. PARTICIPANTS: A sample (N=327) consisting of 148 children (aged 5-9y) and 179 youth (aged 11-20y) with CP, Gross Motor Function Classification System level I (n=180), level II (n=44), level III (n=36), level IV (n=34), and level V (n=33). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Gross motor capacity was assessed with the Gross Motor Function Measure-66 over a period of 2 to 4 years in different age cohorts. Neuromusculoskeletal function included selective motor control (SMC), muscle strength, spasticity, and range of motion (ROM) of the lower extremities. RESULTS: Multilevel analyses showed that SMC was significantly associated with gross motor capacity in children and youth with CP, showing higher values and a more favorable course of gross motor capacity in those with better SMC. Strength was only associated with gross motor capacity in youth. Reduced ROM of hip (children) and knee extension (youth) and spasticity of the hip adductors (youth) were additionally-but more weakly-associated with lower values and a less favorable course of gross motor capacity. CONCLUSIONS: Results indicate that children and youth with more severely impaired SMC and youth with reduced muscle strength have a less favorable course of gross motor capacity, while spasticity and reduced ROM are less determinative.

Longitudinal development of gross motor function among Dutch children and young adults with cerebral palsy: an investigation of motor growth curves.

AIM: The aim of this study was to describe patterns for gross motor development by level of severity in a Dutch population of individuals with cerebral palsy (CP). METHOD: This longitudinal study included 423 individuals (260 males, 163 females) with CP. The mean age at baseline was 9 years 6 months (SD 6y 2mo, range 1-22y). The level of severity of CP among participants, according to the Gross Motor Function Classification System (GMFCS), was 50% level I, 13% level II, 14% level III, 13% level IV, and 10% level V. Participants had been assessed up to four times with the Gross Motor Function Measure (GMFM-66) at 1- or 2-year intervals between 2002 and 2009. Data were analysed using non-linear mixed effects modelling. For each GMFCS level, patterns were created by contrasting a stable limit model (SLM) with a peak and decline model (PDM), followed by estimating limits and rates of gross motor development. RESULTS: The SLM showed a better fit for all GMFCS levels than the PDM. Within the SLM, significant differences between GMFCS levels were found for both the limits (higher values for lower GMFCS levels) and the rates (higher values for GMFCS levels I-II vs level IV and for GMFCS levels I-IV vs level V) of gross motor development. INTERPRETATION: The results validate the existence of five distinct patterns for gross motor development by level of severity of CP.

Manual ability and its relationship with daily activities in adolescents with cerebral palsy.

OBJECTIVE: To describe the manual ability of adolescents with cerebral palsy and to investigate the relationship of manual ability with daily activities. DESIGN: Cross-sectional study. SUBJECTS: Ninety-four adolescents with cerebral palsy, aged 12-16 years. METHODS: Manual ability was assessed according to the Manual Ability Classification System (MACS) and the ABILHAND-Kids. Daily activities were assessed with the Vineland Adaptive Behavior Scales (VABS) sub-scales for (personal and domestic) daily living skills. The relationship between manual ability and daily activities was investigated with regression analysis: independent variables were manual ability, disease and personal characteristics. RESULTS: MACS and ABILHAND-Kids were both strongly associated with personal daily activities (explained variance 77% and 84%, respectively) and less strongly with domestic daily activities (explained variance 45% and 62%, respectively). Including other disease characteristics and personal characteristics in the model increased the explained variance of personal daily activities to 91% for both models and the explained variance of domestic daily activities to 68% and 73% for the MACS and ABILHAND-Kids models, respectively. CONCLUSION: Manual ability is limited in many adolescents with cerebral palsy, and limitations in manual ability are strongly related to limitations in daily activities.

Construct validity of the Capacity Profile in adolescents with cerebral palsy.

OBJECTIVE: To establish construct validity of the Capacity Profile, a method to comprehensively classify additional care needs in five domains of body functions (physical health, motor, sensory, mental, voice and speech functions), in adolescents with non-progressive, permanent conditions such as cerebral palsy. DESIGN: Cross-sectional study. SUBJECTS: Ninety-four adolescents with cerebral palsy: 60 boys, 34 girls, median age 14.3, range 12-16 years, unilateral (n = 37), bilateral (n = 57), spastic (n = 76), ataxic (n = 4), dyskinetic (n = 5), mixed (dyskinetic and spastic, n =9), Gross Motor Function Classification System: level I (n = 50), level II (n = 6), level III (n = 10), level IV (n = 8), level V (n = 20). METHODS: Associations were calculated between Capacity Profile domains and Vineland Adaptive Behavior Scales (communication, daily activities, social and motor skills) and Gross Motor Function Classification System using Spearman's rho. Furthermore, we explored the independent contribution of the Capacity Profile domains to activities and participation measured with the Vineland Adaptive Behavior Scales. RESULTS: All Capacity Profile domains were significantly associated with all domains of the Vineland Adaptive Behavior Scales and the Gross Motor Function Classification System (P<0.05). Multiple regression analysis showed that the Capacity Profile contributed 87% to variance in communication (Capacity Profile-voice 78%, mental 8% and physical 1%), 85% to daily activities (Capacity Profile-mental 75%, motor 8% and voice 2%), 60% to social skills (Capacity Profile-voice 56% and mental 4%), and 91% to motor skills (Capacity Profile-motor 87%, mental 3% and sensory 1%). CONCLUSION: These findings support the construct validity of the Capacity Profile in adolescents with cerebral palsy. Construct validity in other medical conditions should be further investigated.

Social functioning and communication in children with cerebral palsy: association with disease characteristics and personal and environmental factors.

AIM: The objective of this longitudinal study was to describe the course of social functioning and communication in children with cerebral palsy (CP) over a 3-year period, its difference with the normative course, and its relationship with disease characteristics and personal and environmental factors. METHOD: Participants in this study were 110 children with CP (70 males, 40 females) with a mean age of 11 years and 3 months (SD 1y 8mo). Social functioning and communication were measured with the Vineland Adaptive Behavior Scales. Comparisons were made with normative data; data were analysed with generalized estimating equations. According to the Gross Motor Function Classification System (GMFCS), 50 of the 110 children were categorized as GMFCS level I, 16 as level II, 13 as level III, 13 as level IV, and 18 as level V. RESULTS: The course of social functioning over a 3-year period showed an increase in restrictions in children with CP (p<0.001). Restrictions in communication increased more in children with the most severe forms of CP (p<0.001). In addition to disease characteristics (GMFCS category, presence of epilepsy, and speech problems), personal factors (externalizing behaviour problems) and environmental factors (having no siblings, low parental level of education, and parental stress) were associated with greater restrictions in social functioning and communication. INTERPRETATION: The results indicate that it is important to focus not only on the medical treatment of children with CP, but also on their behavioural problems and social circumstances, and to support the parents so that social functioning and communication in these children may be improved.

Longitudinal study of motor performance and its relation to motor capacity in children with cerebral palsy.

AIM: The aim of this study was to describe the course of motor performance and analyse its relationship with motor capacity over a period of 3 years in 104 children (66 males, 38 females; 43% of those initially invited) with cerebral palsy (CP) aged 9, 11, and 13 years at the start of the study. Forty-one had hemiplegia, 42 diplegia, 21 tetraplegia; 83 spastic CP, 17 dyskinetic/mixed, and four ataxic CP. Gross Motor Function Classification System (GMFCS) levels were I, n=49; II, n=15; III, n=10; IV, n=12; and V, n=18. METHOD: Motor performance (what a child does do) was determined using the gross motor skills subscale of the Vineland Adaptive Behavior Scales and motor capacity [what a child can do] was determined using the Gross Motor Function Measure-66 (GMFM-66). The measurements were performed annually over a period of 3 years. RESULTS: The course of motor performance in mildly affected children (GMFCS level I) was more favorable than in more severely affected children. An increase in motor capacity was significantly related to an improvement in motor performance over the 3 years. INTERPRETATION: Training motor capacity in children with CP seems to be important for improving motor performance. Interventions should also focus on environmental adaptations and improving mobility equipment. A limitation of this study was that the instruments used did not contain the same items on capacity and performance level.

Skeletal maturation in children with cerebral palsy and its relationship with motor functioning.

The objective of this study was to describe skeletal maturation in relation to chronological age in children with cerebral palsy (CP) aged 9 to 16 years, and to analyze the relationship between skeletal maturation and motor functioning. The skeletal age of 100 children with CP (37 females, 63 males; age 9, 11, or 13 y; 73 ambulant, 27 non-ambulant) was determined over a period of 3 years based on X-rays of the hand (Greulich and Pyle technique). Motor functioning was measured with the Gross Motor Function Measure-66. The skeletal age of females with CP was significantly higher than their chronological age, but this did not apply to males. Longitudinal analysis showed no difference in the course of skeletal age in relation to chronological age over a 3-year period for sex or for level of ambulation. No association was found between changes in skeletal age and changes in gross motor function over the 3-year period. Skeletal age during (pre-)puberty in females with CP is advanced in relation to chronological age. No evidence was found that children with CP are at risk for deterioration in gross motor function as a result of skeletal maturation during puberty.

Physical activity level and related factors in adolescents with cerebral palsy.

The purpose of this study was to describe the physical activity level of adolescents with cerebral palsy (CP) and to investigate the associated factors. The physical activity level was measured by means of a questionnaire filled in by the parents of 72 adolescents with CP (12-16 years of age) and expressed in METs. Older age, female gender, and hip dysplasia were significantly associated with a lower level of physical activity. Eighty-nine percent were not physically active enough according to the Dutch norm. Physical activity needs to be promoted, especially among older adolescents with CP (age 14-16 years), girls, and adolescents with hip dysplasia.

Increased muscle activity to stabilise mobile bearing knees in patients with rheumatoid arthritis.

The aim of this study was to assess the differences in muscle activity (surface EMG) between a posterior stabilised (PS) total knee design and a mobile bearing (MB) posterior cruciate ligament retaining design in rheumatoid arthritis (RA) patients during a step-up task. Four patients with a PS total knee prosthesis and three patients with a MB total knee prosthesis were selected based on pain score, knee function, range of motion and joint stability. Clinical scores and functional scores were comparable between the two groups pre-operatively and at the 1-year follow-up. Visual analysis of the EMG activity of the main flexor and extensor muscles showed that the activity of both extensor and flexor muscles of the MB group was on average higher compared to the PS group. When the maximum activities of the muscles were compared, the patients in the MB group showed a significant higher maximum peak activity (p<0.05) of the Vastus Medialis (VM), Vastus Lateralis (VL) and Semitendinosus (ST) during step-up than the patients in the PS group. Also the instance of activation of the Vastus Medialis and the Vastus Lateralis was significant earlier in the MB group compared to the PS group. Since the differences between the PS and the MB group did not only show an increase of muscle activity but also an earlier activation of the flexor muscles, this may express compensation by coordination. Rehabilitation programs for RA patients should include besides muscle strength training, elements of muscle-coordination training.