Physical Activity Levels and Adiposity in Ambulant Children and Adolescents With Cerebral Palsy Compared With Their Typically Developing Peers.

PURPOSE: This study assessed physical activity (PA) and body composition of ambulatory children and adolescents with cerebral palsy (CP) and their typically developing peers. METHODS: Participants included youth with CP (ages 8-18 y and Gross Motor Function Classification System [GMFCS] levels I-III) and their typically developing peers. Outcomes included PA (actigraphy) and fat/lean mass index (FMI/LMI; dual-energy X-ray absorptiometry). Statistical analyses included linear mixed effects models with Bonferroni adjustment. Fixed effects were study group (CP and typically developing); random effects were participant clusters (sex and age). Exploratory analyses included association of body composition and PA, GMFCS level, and CP involvement (unilateral and bilateral). RESULTS: Seventy-eight participants (CP: n = 40, girls: n = 29; GMFCS I: n = 20; GMFCS II: n = 14; GMFCS III: n = 6) met inclusion criteria. Individuals with CP had lower moderate to vigorous PA (MVPA; ß = -12.5; 98.3% confidence interval, -22.6 to -2.5 min; P = .004) and lower LMI (ß = -1.1; 97.5% confidence interval, -2.1 to -0.0 kg/m2; P = .020). Exploratory analyses indicated increased LMI with greater MVPA (P = .001), reduced MVPA for GMFCS II (P = .005) and III (P = .001), increased sedentary time for GMFCS III (P = .006), and greater fat mass index with unilateral motor impairment (P = .026). CONCLUSIONS: The findings contribute to the knowledge base of increasing MVPA and LMI deficits with the greater functional impact of CP. Associations of increasing LMI with greater MVPA support efforts targeting enhanced PA participation to promote independent mobility.

Chronicling Research and Practice Evolution in Pediatric Physical Therapy.

PURPOSE: To observe research and practice trends in the journal, Pediatric Physical Therapy, as a proxy for the field. METHODS: All issues of Pediatric Physical Therapy published from 1989 to 2019 were chronicled and summarized. Data were extracted regarding variables related to the issues and individual articles. RESULTS: The most common diagnosis studied was cerebral palsy. The proportion of studies involving middle childhood and adolescent-aged participants increased over time. Cohort studies and exercise were the most common study type and intervention studied, respectively. The proportion of scientific content in the journal increased. CONCLUSION: It is evident that pediatric physical therapy research has evolved over the past 30 years, both in rigor of articles published and in breadth of populations studied. WHAT THIS ADDS TO THE EVIDENCE: This review adds an in-depth evaluation of trends in the literature, facilitating the profession's continued growth.

Descriptive Report of the Impact of Fatigue and Current Management Strategies in Cerebral Palsy.

PURPOSE: To describe the effect of fatigue and self-management practices for adolescents and young adults with cerebral palsy. METHODS: A survey of 124 people with cerebral palsy with the Fatigue Impact and Severity Self-Assessment. RESULTS: Participants in Gross Motor Function Classification System (GMFCS) level I experienced little effect of fatigue, with high proportions of this group disagreeing to statements about fatigue impacting their general activities, mobility, and social activities. Participants in GMFCS levels II to V reported effect of fatigue on activities. Differences between groups were evident in questions related to fatigue interference with length of time for physical activity and with motivations to participate in social activities. All other items related to management of fatigue were not significantly different between groups. CONCLUSIONS: Fatigue effect is greater for participants with more functional limitations. The lack of significant differences between groups, on the Management and Activity Modification subscale, indicates more research is needed regarding strategies for fatigue management.

Fatigue and its relationship with physical activity, age, and body composition in adults with cerebral palsy.

AIM: The objectives of this exploratory study were (1) to describe the experience of fatigue in adults with cerebral palsy (CP) inclusive of all levels of the Gross Motor Function Classification System (GMFCS); and (2) to determine if physical activity level, sedentary time, age, or body composition can predict fatigue in adults with CP. METHOD: An observational study was conducted in an outpatient setting in Ontario, Canada. Participants included adults with CP (n=41; GMFCS levels I-V; mean age 33.7y, standard deviation [SD] 12.3y). Fatigue was measured using the Fatigue Impact and Severity Self-Assessment (FISSA) questionnaire. Habitual physical activity and sedentary time were measured using accelerometry. Body mass index (BMI) and waist circumference were reported as measures of body composition. RESULTS: The mean (SD) FISSA score for all participants was 84.5 (30.6), ranging from 54.0 (18.3) (GMFCS level I) to 93.6 (21.9) (GMFCS level V). Significant positive relationships (regression coefficient ß [95% confidence intervals]) were observed between BMI and FISSA scores (1.9 [0.73-3.1]), waist circumference and FISSA scores (0.71 [0.19-1.2]), and age and FISSA scores (0.99 [0.26-1.7]). A significant negative relationship was observed between moderate-to-vigorous physical activity (MVPA) per hour and FISSA scores -6.4 [-12 to -0.83]). Backwards stepwise regression analysis revealed BMI (1.8 [0.61-2.9]) and MVPA per hour (-5.4 [-10 to -0.30]) were significant predictors of FISSA scores. INTERPRETATION: Health care providers should consider the importance of weight management and physical activity to prevent and treat fatigue in this population.

Parents' Experiences and Perceptions when Classifying their Children with Cerebral Palsy: Recommendations for Service Providers.

AIMS: This study investigated the experiences and perceptions of parents of children with cerebral palsy (CP) when classifying their children using the Gross Motor Function Classification System (GMFCS), the Manual Ability Classification System (MACS), and the Communication Function Classification System (CFCS). The second aim was to collate parents' recommendations for service providers on how to interact and communicate with families. METHODS: A purposive sample of seven parents participating in the On Track study was recruited. Semi-structured interviews were conducted orally and were audiotaped, transcribed, and coded openly. A descriptive interpretive approach within a pragmatic perspective was used during analysis. RESULTS: Seven themes encompassing parents' experiences and perspectives reflect a process of increased understanding when classifying their children, with perceptions of utility evident throughout this process. Six recommendations for service providers emerged, including making the child a priority and being a dependable resource. CONCLUSIONS: Knowledge of parents' experiences when using the GMFCS, MACS, and CFCS can provide useful insight for service providers collaborating with parents to classify function in children with CP. Using the recommendations from these parents can facilitate family-provider collaboration for goal setting and intervention planning.

Self-reported factors contributing to fatigue and its management in adolescents and adults with cerebral palsy.

PURPOSE: To explore the self-reported factors that generate fatigue and to describe fatigue self-management strategies from the perspectives of adolescents and adults with cerebral palsy (CP). MATERIALS AND METHODS: Text responses to open-ended questions of the Fatigue Impact and Severity Self-Assessment from 160 participants (mean age 22.4 years) across all GMFCS levels were coded using inductive line-by-line coding and then grouped together to generate larger categories for each question. Frequency counts associated with each category were then summarized descriptively by Gross Motor Function Classification System level. RESULTS: The most commonly reported contributors to fatigue included the following: activity-related factors, general demands of life, sleep/rest, general health concerns, CP-related factors, mental health concerns, and environmental factors. The top five strategies participants reported to manage fatigue included rest or relaxation, sleeping or napping, changing or limiting their activities, being physically active, or using specific adaptations or assistive devices. CONCLUSIONS: Results from this study suggest that there are potentially modifiable factors, including activity level and sleep, that significantly contribute to fatigue for persons with CP; these could form the basis of interventions targeted at the prevention and management of fatigue.Implications for RehabilitationAs individuals with cerebral palsy who are physically active experience significant fatigue, clinicians need to address fatigue to enable these individuals to reap the health benefits of physical activity.Providing education and support to integrate self-management techniques, such as planning and pacing, may be an effective long-term strategy to support individuals to complete highly valued tasks.Interventions targeting modifiable fatigue-generating factors such as activity level, sleep, and mental health concerns are needed.

More Than Just Adolescence: Differences in Fatigue Between Youth With Cerebral Palsy and Typically Developing Peers.

OBJECTIVE: To quantify differences in fatigue and disordered sleep between adolescents with cerebral palsy (CP) and their typically developing peers. A secondary aim was to investigate the association between fatigue and disordered sleep in adolescents with CP. METHODS: A convenience sample of 36 youth with CP aged 10-18 years was matched for age and sex with 36 typically developing peers. The Fatigue Impact and Severity Self-Assessment (FISSA), the Patient-Reported Outcome Measurement Information System (PROMIS) fatigue profile, and the Sleep Disturbance Scale for Children (SDSC) were collected. RESULTS: Higher fatigue was reported in participants with CP than in their typically developing peers based on the FISSA total score (mean paired difference=19.06; 99% confidence interval [CI], 6.06-32.1), the FISSA impact subscale (mean paired difference=11.19; 99% CI, 3.96-18.4), and the FISSA Management and Activity Modification subscale (mean paired difference=7.86; 99% CI, 1.1-14.6). There were no differences between groups in the PROMIS fatigue profile (mean paired difference=1.63; 99% CI, -1.57-4.83) or the SDSC total score (mean paired difference=2.71; 99% CI, -2.93-8.35). CONCLUSION: Youth with CP experienced significantly more fatigue than their peers as assessed by a comprehensive measure that considered both general and diagnosis-specific concerns. Sleep did not differ between youth with CP and their typically developing peers. These findings underscore the need to consider the clinical management of fatigue across the lifespan of individuals with CP to prevent the associated deterioration of functional abilities.

Description of exercise participation of adolescents with cerebral palsy across a 4-year period.

PURPOSE: The purposes of this study were to describe (1) the types of exercise participation of adolescents with cerebral palsy; (2) the weekly duration of stretching, strengthening, and cardiovascular exercise; (3) how the level of activity compares with national health guidelines; and (4) the change in participation over 4 years. METHODS: Participants included 126 males and 104 females (mean age = 14.7 years, SD = 1.7 years) who reported physical activities in the previous week. Analyses included frequency counts and proportions, stacked bar graphs, and 2-way analyses of variance of exercise participation by Gross Motor Function Classification System (GMFCS) and sex. RESULTS: A significant main effect of GMFCS level was detected for light and moderate exercise. A significant interaction of GMFCS level and sex was found for stretching; females stretched more. An average of 9.4% and 11.4% of our sample participated in weekly levels of moderate and vigorous exercise, respectively. CONCLUSIONS: Pediatric physical therapists should promote increased exercise participation rates among youths with cerebral palsy.

Construction and validation of the fatigue impact and severity self-assessment for youth and young adults with cerebral palsy.

PURPOSE: The Fatigue Impact and Severity Self-Assessment (FISSA) was created to assess the impact, severity, and self-management of fatigue for individuals with cerebral palsy (CP) aged 14-31 years. METHODS: Items were generated from a review of measures and interviews with individuals with CP. Focus groups with health-care professionals were used for item reduction. A mailed survey was conducted (n=163/367) to assess the factor structure, known-groups validity, and test-retest reliability. RESULTS: The final measure contained 31 items in two factors and discriminated between individuals expected to have different levels of fatigue. Individuals with more functional abilities reported less fatigue (p < 0.002) and those with higher pain reported higher fatigue (p < 0.001). The FISSA was shown to have adequate test-retest reliability, intraclass correlation coefficient (ICC)(3,1)=0.74 (95% confidence interval [CI] 0.53-0.87). CONCLUSIONS: The FISSA valid and reliable for individuals with CP. It allows for identification of the activities that may be compromised by fatigue to enhance collaborative goal setting and intervention planning.

The bodily experience of cerebral palsy: a journey to self-awareness.

PURPOSE: The aim of the study was to describe the lived bodily experience of cerebral palsy (CP). METHOD: This was a descriptive phenomenological inquiry. Ten participants were interviewed about their bodily experiences of living with CP. Interviews were semi-structured around pain and fatigue. Inductive thematic analysis was used to identify themes. RESULTS: The bodily experience of CP centered on issues of fatigue and pain as a feeling of muscle soreness. An overwhelming amount of the discussion on fatigue emphasized the fatigue that occurs with walking and prolonged activity. Self-awareness of the individuals' own bodies and adapting activity to continue to participate in various aspects of their lives emerged as the most important theme. Some participants used strategies to manage their pain or fatigue; other participants were not yet fully aware of how to recognize signs of fatigue and/or how to adapt their activities. CONCLUSIONS: Self-awareness appears to be an important process to be fostered by service providers and parents. Specifically, encouraging youth with CP to be aware of their own bodies and the effects (positive and negative) of activity on pain and fatigue should be incorporated into transition programs as the individual becomes responsible for his or her own health care needs. Implications for Rehabilitation Fatigue is a major concern for some youth and young adults with cerebral palsy. Adolescents and young adults with cerebral palsy use a variety of techniques (including adapting or restricting activity and building in rest breaks) to manage fatigue. The process of self-awareness should be fostered by health care professionals leading up to and during transition from pediatric to adult care. Clinical conversations should explore the role of exercise, adaptive equipment, rest and other strategies for dealing with fatigue with a focus on understanding each client's needs individually.

Validity and reliability of two abbreviated versions of the Gross Motor Function Measure.

BACKGROUND: The "gold standard" for measuring gross motor function in children with cerebral palsy is the 66-item Gross Motor Function Measure (GMFM-66). OBJECTIVE: The purpose of this study was to estimate the validity and reliability of 2 abbreviated versions of the GMFM-66; one version involves an item set approach, and the other version involves a basal and ceiling approach. DESIGN: This was a measurement study comprising concurrent validity, comparability, and test-retest reliability components. METHODS: The study participants were 26 children who were 2 to 6 years of age and had cerebral palsy across all Gross Motor Function Classification System levels. In the first session, both abbreviated versions were administered by 2 independent raters; next, the full GMFM-66 was administered. In the second session, only the abbreviated versions were administered by the same raters. Concurrent validity, comparability of versions, and test-retest reliability were determined with intraclass correlation coefficients [ICC (2,1)]. RESULTS: Both versions demonstrated high levels of validity, with an ICC of .99 (95% confidence interval=0.972-0.997), reflecting associations with the GMFM-66. Both versions also were shown to be highly reliable, with ICCs of greater than .98 (95% confidence interval=0.965-0.994). LIMITATIONS: A smaller-than-expected sample was recruited for this study and may be a potential limitation of the study. CONCLUSION: Both versions of the GMFM-66 can be used in clinical practice or research. However, the GMFM-66 with the basal and ceiling approach is recommended as the preferred abbreviated version.