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

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

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

The Manual Ability Classification System: A Scoping Review

PURPOSE: To examine the use of the Manual Ability Classification System (MACS) and to identify gaps in the literature by conducting a thorough search of existing publications from 2006 to March 2013. METHODS: An extensive literature search included 15 databases, using the search terms Manual Ability Classification System or MACS to retrieve relevant abstracts. RESULTS: A total of 161 articles were identified for final inclusion. The review identified literature that supports the reliability, validity, and stability of the MACS. CONCLUSIONS: The MACS could be considered as a standard classification for children with cerebral palsy on the basis of manual abilities. The MACS can be reliably used for children between 4 and 18 years and adults between 18 and 24 years. The use of the MACS is expected to increase; further work is required to explore the use of the MACS in clinical practice

Interrelationships of Functional Status and Health Conditions in Children With Cerebral Palsy: A Descriptive Study.

PURPOSE: To examine the relationship among the Gross Motor Function Classification System (GMFCS), the Manual Ability Classification System (MACS), and the Communication Function Classification System (CFCS) in children with cerebral palsy (CP) and to determine the average number and effect of health conditions. METHODS: Participants were 671 children with CP aged 2 to 12 years from Canada and the United States. Cross-tabulation of functional classifications and averages were computed for the number and impact of health conditions and comparisons among groups. RESULTS: A total of 78 of the 125 possible classification combinations were recorded. Most frequent were GMFCS I, MACS I, CFCS I; GMFCS I, MACS II, CFCS I; and GMFCS II, MACS II, CFCS I. With lower levels of function, the average number and average impact of associated health conditions increased. CONCLUSIONS: The use of functional profiles across classification systems, with data on the associated health conditions, provides a more comprehensive picture of CP than any single classification or measure

Moving from parent consultant to parent collaborator : one pediatric research team\u27s experience.

We share our experiences as academic physical therapists and parents of young people with cerebral palsy working together as a research team, describe and critically review how our working relationship has evolved and propose further enhancements to realize our shared vision. This manuscript is informed by a call for “family-centered research,” transcripts of face-to-face meetings held over a period of 11/2 days, the INVOLVE document and our experiences over almost a decade, as well as other related literature. Authentic collaborative research partnerships between academic researchers and parents embodying trust, mutual respect and shared social responsibility take time and effort to develop and sustain. Rehabilitation research is more meaningful and may be more impactful when strong collaborative partnerships between researchers and health service users are in place

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)