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. Methods Used: Items were generated from a review of measures and interviews with individuals with CP. Focus groups with healthcare 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 Obtained: 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\u3c 0.002) and those with higher pain reported higher fatigue (p\u3c 0.001). The FISSA was shown to have adequate test-retest reliability, ICC(3,1)=0.74 (95% CI 0.53-0.87). Conclusions Reached: 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

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

Aim: The “gold standard” to measure gross motor functioning for children with cerebral palsy (CP) is the Gross Motor Function Measure (GMFM-66). The purpose of this study was to estimate the validity and reliability of two abbreviated versions (item set (GMFM-66 IS) and basal and ceiling (GMFM-66 B&C) approaches) of the GMFM-66. Methods: Twenty-six children with CP aged 2 to 6 years across all GMFCS levels participated. At session one, both abbreviated versions were administered by two independent raters, followed by the full GMFM-66. In the subsequent session, only the abbreviated versions were administered, by the same raters. Concurrent validity, comparability between versions and test-retest reliability were determined using intraclass correlation coefficients (ICC 2,1). Results: Both versions demonstrated high levels of validity with ICCs reflecting associations with the GMFM-66 of 0.99 (95% CIs ranging from 0.972-0.997). Both versions were also shown to be highly reliable with ICCs greater than 0.98 (95% CIs ranging from 0.965-0.994). Interpretation: Both versions can be used in clinical practice or research. However, the GMFM-66-B&C is recommended as the preferred abbreviated version

Profiles of Fatigue Severity and Variability Among Adolescents and Young Adults with Cerebral Palsy

Background: Individuals with cerebral palsy (CP) experience progressive changes in functional status with the development of secondary impairments such as fatigue. Detailed accounts of the fatigue experience in CP are lacking. Purpose: This study describes the severity and variability of fatigue in CP using the Fatigue Impact and Severity Self-Assessment. Methods: This was a descriptive cross-sectional study surveying 130 (61 males) individuals (mean age 18 years, 11 months; SD four years, six months) with CP. Analyses comprised comparisons between two groups (Gross Motor Function Classification System (GMFCS) I and II-V), frequency counts and proportions. Results: Significant differences exist between GMFCS groups for all fatigue severity questions. In addition, 38% of individuals classified as GMFCS level I reported their average fatigue as moderate to severe and 53% experienced fatigue on three or more days in the previous week. Sixty-eight percent of individuals classified as GMFCS II-V reported their average fatigue to be moderate to severe and 78% were fatigued on three or more days in the previous week. Conclusions: Fatigue is a highly individualized phenomenon with significant burden for individuals with CP regardless of functional ability. Individuals in GMFCS Levels II-V reported increased fatigue severity and would benefit from specific management interventions

Parents\u27 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\u27 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\u27 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\u27 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

A critical review of audiological outcome measures for infants and children

Outcome evaluation is an important stage in the pediatric hearing aid fitting process, however a systematic way of evaluating outcome in the pediatric audiology population is lacking. This is in part due to the need for an evidence-based outcome evaluation guideline for infants and children with hearing loss who wear hearing aids. As part of the development of a guideline, a critical review of the existing pediatric audiology outcome evaluation tools was conducted. Subjective outcome evaluation tools that measure auditory-related behaviors in children from birth to 6 years of age were critically appraised using a published grading system (Andresen, 2000). Of the tools that exist, 12 were appraised because they met initial criteria outlined by the Network of Pediatric Audiologists of Canada as being appropriate for children birth to 6 years of age who wear hearing aids. Tools that were considered for the guideline scored high in both statistical and feasibility criteria. The subjective outcome evaluation tools that were ultimately chosen to be included in the guideline were the LittlEARS Auditory Questionnaire (Tsiakpini et al., 2004) and the Parents\u27 Evaluation of Aural/Oral Performance of Children (PEACH) Rating Scale (Ching & Hill, 2005b) due to the high grades they received in the critical review and their target age ranges. Following this critical review of pediatric outcome evaluation tools, the next step was for the Network Clinicians to evaluate the guideline (Moodie et al., 2011b)

A Collaborative Approach to Decision Making Through Developmental Monitoring to Provide Individualized Services for Children With Cerebral Palsy.

In this Perspective, we suggest a process to improve physical and occupational therapists’ and families’ collaboration to provide appropriate, efficient, and effective evidence-based services to improve motor function, self-care performance, and participation in family and recreation activities for children with cerebral palsy (CP). This process is informed by 2 multisite prospective cohort studies (Move & PLAY and On Track). The heterogeneity of children with CP is described, limiting the utility of evidence from randomized controlled trials and systematic reviews to inform service planning for children with CP. An evidence-based alternative using prospective cohort studies that produce knowledge of determinants of outcomes important to children and families and methods for developmental monitoring using longitudinal developmental and reference percentile curves to inform individualized care is suggested. Guiding questions are provided to explore how knowledge of determinants and developmental monitoring can inform family-centered, collaborative, strengths-based, and focused service programs to support early development and function. Although this perspective paper is focused on children with CP, the research approach described for collection of useful information and the clinical method of data use may be helpful for people with other heterogeneous chronic health conditions in which physical and occupational therapists face similar challenges

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\u27 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\u27s needs individually

Longitudinal trajectories and reference centiles for the impact of health conditions on daily activities of children with cerebral palsy.

AIM: First, to describe the impact of health conditions on daily activities over time in children with cerebral palsy (CP) and to create age-specific reference centiles. Second, to determine the amount of change typical over a 1-year period, across Gross Motor Function Classification System (GMFCS) levels. METHOD: A prospective, cohort design, with five assessments over 2 years, involved 708 children with a confirmed diagnosis of CP participating in the On Track Study (396 males, 312 females; mean age 6y [SD 2y 7mo]; range 18mo-12y at first assessment; 32.1% in GMFCS level I, 22.7% in GMFCS level II, 11.2% in GMFCS level III, 18.2% in GMFCS level IV, 15.7% in GMFCS level V). The impact of health conditions on daily activities was assessed using the Child Health Conditions Questionnaire. Data were analyzed using mixed-effects models and quantile regression. RESULTS: Linear longitudinal trajectories describe the relatively stable impact of health conditions over time for each functional level for children aged 2 years to 12 years, with the lowest scores (least impact) in GMFCS level I and the highest scores (highest impact) in GMFCS level V. Centiles were created for children in each GMFCS level. A system to interpret the magnitude of change over time in centiles was developed. INTERPRETATION: Longitudinal trajectories of co-occurring health conditions assist with understanding children\u27s prognoses. Centiles assist in understanding a child\u27s experience relative to children in similar GMFCS levels. Guidelines are provided to determine if children are progressing \u27as expected\u27, \u27better than expected\u27 or \u27more poorly than expected\u27 in regard to the impact of health conditions on daily activities. WHAT THIS PAPER ADDS: For children with cerebral palsy, the mean impact of health conditions on daily activities is relatively stable. Significant intraindividual and interindividual variability for the impact of health conditions exists, which complicates prognosis. Centiles enable interpretation of the impact of health conditions relative to Gross Motor Function Classification System level