Quality of life (QOL) narratives of growing up with epilepsy from youth and family perspectives.

PURPOSE: Qualitative research studies deepen our understanding of growing up with epilepsy but are limited to the singular perspective of children or their parents at one point in childhood. A more complete view requires multiple perspectives and narrative accounts that represent development from early childhood to young adulthood. Thematic study of life narratives of 7 young people and at least one person within their families were interviewed separately (15 participants) for two interviews each (30 interviews). The objective was to obtain narratives of the life experiences, the attributions of those experiences, and crucial periods relating to quality of life (QOL) with no apriori assumptions that their lives were shaped by epilepsy. Themes were formed inductively from subthemes and codes were created based on the constant comparative method by two interviewers who iteratively co-coded the data. RESULTS: Themes emerging from the data: "Story of My Health," "Growing by Doing," "To Adapt or Not to Adapt," "Supports and Challenges," "Parent World," and "Looking in and Out, Forward and Back", often included components of seizure and epilepsy experiences but also mirrored life challenges of growing up in general. The only exclusively epilepsy-specific theme: "To Adapt or Not to Adapt", was about the challenges and solutions for dealing with the uncertainty caused by seizures and potential isolation that results from others' reactions. CONCLUSIONS: There were a range of experiences related to QOL described by participants growing up with epilepsy. The 'ingredients' of a good life (e.g., social and self-acceptance) were consistent with QOL research for general populations, although these were often expressed as more difficult to attain when growing up with epilepsy.

Considerations for Health Researchers Using Social Media for Knowledge Translation: Multiple Case Study.

BACKGROUND: Despite extensive literature describing the use of social media in health research, a gap exists around best practices in establishing, implementing, and evaluating an effective social media knowledge translation (KT) and exchange strategies. OBJECTIVE: This study aims to examine successes, challenges, and lessons learned from using social media within health research and to create practical considerations to guide other researchers. METHODS: The Knowledge Translation Platform of the Alberta Strategy for Patient-Oriented Research SUPPORT Unit formed a national working group involving platform staff, academics, and a parent representative with experience using social media for health research. We collected and analyzed 4 case studies that used a variety of social media platforms and evaluation methods. The case studies covered a spectrum of initiatives from participant recruitment and data collection to dissemination, engagement, and evaluation. Methods and findings from each case study as well as barriers and facilitators encountered were summarized. Through iterative discussions, we converged on recommendations and considerations for health researchers planning to use social media for KT. RESULTS: We provide recommendations for elements to consider when developing a social media KT strategy: (1) set a clear goal and identify a theory, framework, or model that aligns with the project goals and objectives; (2) understand the intended audience (use social network mapping to learn what platforms and social influences are available); (3) choose a platform or platforms that meet the needs of the intended audience and align well with the research team's capabilities (can you tap into an existing network, and what mode of communication does it support?); (4) tailor messages to meet user needs and platform requirements (eg, plain language and word restrictions); (5) consider timing, frequency, and duration of messaging as well as the nature of interactions (ie, social filtering and negotiated awareness); (6) ensure adequate resources and personnel are available (eg, content creators, project coordinators, communications experts, and audience stakeholder or patient advocate); (7) develop an evaluation plan a priori driven by goals and types of data available (ie, quantitative and qualitative); and (8) consider ethical approvals needed (driven by evaluation and type of data collection). CONCLUSIONS: In the absence of a comprehensive framework to guide health researchers using social media for KT, we provide several key considerations. Future research will help validate the proposed components and create a body of evidence around best practices for using and evaluating social media as part of a KT strategy.

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability.

BACKGROUND: Efforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships. OBJECTIVE: Our objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families. METHODS: The Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members. RESULTS: The PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group. CONCLUSIONS: The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.

Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts.

PURPOSE: To describe how stakeholder engagement has been undertaken and evaluated in rehabilitation research. METHODS: A scoping review of the scientific literature using five search strategies. Quantitative and qualitative analyses using extracted data. Interpretation of results was iteratively discussed within the team, which included a parent stakeholder. RESULTS: Searches identified 101 candidate papers; 28 were read in full to assess eligibility and 19 were included in the review. People with disabilities and their families were more frequently involved compared to other stakeholders. Stakeholders were often involved in planning and evaluating service delivery. A key issue was identifying stakeholders; strategies used to support their involvement included creating committees, organizing meetings, clarifying roles and offering training. Communication, power sharing and resources influenced how stakeholders could be engaged in the research. Perceived outcomes of stakeholder engagement included the creation of partnerships, facilitating the research process and the application of the results, and empowering stakeholders. Stakeholder engagement outcomes were rarely formally evaluated. CONCLUSIONS: There is a great interest in rehabilitation to engage stakeholders in the research process. However, further evidence is needed to identify effective strategies for meaningful stakeholder engagement that leads to more useful research that positively impacts practice. Implications for Rehabilitation Using several strategies to engage various stakeholders throughout the research process is thought to increase the quality of the research and the rehabilitation process by developing proposals and programs responding better to their needs. Engagement strategies need to be better reported and evaluated in the literature. Engagement facilitate uptake of research findings by increasing stakeholders' awareness of the evidence, the resources available and their own ability to act upon a situation. Factors influencing opportunities for stakeholder engagement need to be better understood.

Psychological distress in children with developmental coordination disorder and attention-deficit hyperactivity disorder.

This study explored whether or not a population-based sample of children with developmental coordination disorder (DCD), with and without comorbid attention deficit/hyperactivity disorder (ADHD), experienced higher levels of psychological distress than their peers. A two-stage procedure was used to identify 244 children: 68 with DCD only, 54 with ADHD only, 31 with comorbid DCD and ADHD, and 91 randomly selected typically developing (TD) children. Symptoms of depression and anxiety were measured by child and parent report. Child sex and caregiver ethnicity differed across groups, with a higher ratio of boys to girls in the ADHD only group and a slightly higher proportion of non-Caucasian caregivers in the TD group. After controlling for age, sex, and caregiver ethnicity, there was significant variation across groups in both anxiety (by parent report, F(3,235)=8.9, p<0.001; by child report, F(3,236)=5.6, p=0.001) and depression (parent report, F(3,236)=23.7, p<0.001; child report, F(3,238)=9.9, p<0.001). In general, children in all three disorder groups had significantly higher levels of symptoms than TD children, but most pairwise differences among those three groups were not significant. The one exception was the higher level of depressive symptoms noted by parent report in the ADHD/DCD group. In conclusion, children identified on the basis of motor coordination problems through a population-based screen showed significantly more symptoms of depression and anxiety than typically developing children. Children who have both DCD and ADHD are particularly at heightened risk of psychological distress.

Criterion validity of the GMFM-66 item set and the GMFM-66 basal and ceiling approaches for estimating GMFM-66 scores.

AIM: The aim of this study was to compare the accuracy of two abbreviated approaches for estimating Gross Motor Function Measure 66 (GMFM-66) scores against the full GMFM-66 and to explore their strengths and limitations. METHOD: An existing dataset (n=224) comprising children aged 1 to 13 years (mean age 6y 11mo, SD 4y 6mo; 132 males, 92 females) with cerebral palsy (CP) of all Gross Motor Function Classification System (GMFCS) levels was used to compare the validity of the item set version (GMFM-66-IS) and the basal and ceiling version (GMFM-66-B&C) with the full GMFM-66 scores. Follow-up assessment at 1 year (n=109) allowed evaluation of change scores and accuracy at a single point in time. RESULTS: The cross-sectional agreement was excellent for both abbreviated measures (all intraclass correlation coefficients [ICCs] >0.98). When measuring change over time, both the GMFM-66-IS and the GMFM-66-B&C showed good agreement for children with bilateral CP (ICCs >0.9). However, the GMFM-66-IS assessed change over 1 year more accurately than the GMFM-66-B&C in children with unilateral CP (ICC=0.89 vs ICC=0.58; 95% confidence intervals do not overlap). INTERPRETATION: Both approaches for estimating GMFM-66 scores are accurate at a single point in time. If the primary goal of assessment is to measure change, the full GMFM-66 should still be regarded as the criterion standard. The GMFM-66-IS should be the preferred shortened measure for children with unilateral CP.

Use of the Medical Research Council Framework to develop a complex intervention in pediatric occupational therapy: Assessing feasibility.

The United Kingdom Medical Research Council recommends use of a conceptual framework for designing and testing complex therapeutic interventions. Partnering for Change (P4C) is an innovative school-based intervention for children with Developmental Coordination Disorder (DCD) that was developed by an interdisciplinary team who were guided by this framework. The goals of P4C are to facilitate earlier identification, build capacity of educators and parents to manage DCD, and improve children's participation in school and at home. Eight occupational therapists worked in school settings during the 2009-2010 school year. Their mandate was to build capacity through collaboration and coaching with the school becoming the "client", rather than any individual student. Over 2600 students and 160 teachers in 11 elementary schools received service during the project. Results from questionnaires and individual interviews indicated that this model was highly successful in increasing knowledge and capacity. P4C intervention holds promise for transforming service delivery in schools.

Partnering for change: an innovative school-based occupational therapy service delivery model for children with developmental coordination disorder.

BACKGROUND: Developmental coordination disorder (DCD) is a common, chronic health condition that is poorly recognized and understood in school settings. Without appropriate support, children with DCD are at increased risk of depression, decreased fitness, and obesity. Evidence shows that occupational therapy intervention needs to shift from remediation of impairment to chronic disease management. PURPOSE: This paper describes Partnering for Change (P4C), an innovative, empirically derived school health service delivery model for children with DCD. KEY ISSUES: The model emphasizes the partnership of the occupational therapist with educators and parents to change the life and daily environment of a child. The P4C partnership focuses on capacity building through collaboration and coaching in context. The model uses a tiered approach which includes whole class instruction, dynamic performance analysis, and monitoring response to intervention. IMPLICATIONS: P4C is a model that responds to the needs of this population, addresses issues identified in research, and provides a continuum of services designed to build capacity.

Social participation of adolescents with cerebral palsy: trade-offs and choices.

This article reports on the findings of a qualitative study about the experiences and perceptions of adolescents with cerebral palsy (CP) in relation to social participation. A phenomenological approach was used to interview 10 adolescents with CP, 17 to 20 years of age, selected using purposeful sampling. An iterative process of data collection and analysis resulted in four themes about social participation. The themes of experience, barriers, and supports, and tradeoffs supported the current view of participation as a dynamic interaction between person and environment. The fourth theme of making choices described the unique challenges facing adolescents with CP in terms of deciding what was most important and meaningful to them now and in their future. Health care professionals can support adolescents as they develop the capacity to make their own decisions during the transition to adult living by ensuring that assessments and interventions address social participation.

Understanding paediatric rehabilitation therapists' lack of use of outcome measures.

PURPOSE: Despite widespread educational and promotional efforts, paediatric rehabilitation therapists still do not systematically or routinely use outcome measures. METHOD: A review of contextual and psychosocial factors affecting therapists' use of outcome measures was performed, incorporating information from past studies of barriers to therapists' use of measures and more recent information about measure use, knowledge brokering and expert practice. RESULTS: This cumulative and contextual overview provided insights into how many therapists may approach practice. Therapists' beliefs in the importance of establishing effective relationships may lead them to place less value on formal measurement, to adopt a less rigorous and more pragmatic approach to ascertaining whether outcomes are achieved, and to avoid measures that may show little improvement. CONCLUSIONS: A relational goal-oriented approach to practice is proposed in which therapists adopt a broader facilitative and educational role with families about the importance of the measurement process.

Context therapy: a new intervention approach for children with cerebral palsy.

AIM: To describe the development of context therapy, a new intervention approach designed for a randomized controlled trial. METHOD: Therapists were trained to change task and environmental factors to achieve parent-identified functional goals for children with cerebral palsy. Therapists did not provide any remediation strategies to change the abilities of the child. Theoretical constructs were developed using dynamic systems theory and the principles of family-centered care. A primary therapist model was used. A three-step intervention strategy was developed. RESULTS: Therapists adhered to the treatment protocol. Parents participated in the development of both functional goals and intervention strategies. INTERPRETATION: A therapy approach focusing on changing the task and the environment rather than children's impairments can be a viable treatment strategy and merits further investigation. The detailed description of the context therapy approach allows replication by both researchers and clinicians. Such intervention descriptions are an important methodological consideration in rehabilitation research.

Focus on function: a cluster, randomized controlled trial comparing child- versus context-focused intervention for young children with cerebral palsy.

AIM: This study evaluated the efficacy of a child-focused versus context-focused intervention in improving performance of functional tasks and mobility in young children with cerebral palsy. METHOD: A randomized controlled trial cluster research design enrolled 128 children (49 females, 79 males; age range 12 mo to 5 y 11 mo; mean age 3 y 6 mo, SD -1 y 5 mo) who were diagnosed with cerebral palsy. Children across levels I to V on the Gross Motor Classification System (GMFCS) were included in the study. Children were excluded if there were planned surgical or medication changes during the intervention period. Therapists from 19 children's rehabilitation centers were block randomized (by occupational therapist or physical therapist) to a treatment arm. Children from consenting families followed their therapists into their assigned group. Children received child-focused (n=71) or context-focused intervention (n=57) over 6 months, returning to their regular therapy schedule and approach between 6 and 9 months. The primary outcome measure was the Pediatric Evaluation of Disability Inventory (PEDI). Secondary outcome measures included the Gross Motor Function Measure (GMFM-66), range of motion of hip abduction, popliteal angle and ankle dorsiflexion, the Assessment of Preschool Children's Participation (APCP), and the Family Empowerment Scale (FES). Outcome evaluators were masked to group assignment and completed assessments at baseline, 6 months, and 9 months. RESULTS: Ten children did not complete the full intervention, six in the child group and four in context group. GMFCS levels for children in the study were level I (n=37), level II (n=23), level III (n=21), level IV (n=21), and level V (n=26). There were no significant differences at baseline between the treatment groups for GMFCS level, parental education, or parental income. For the PEDI, there was no significant difference between the treatment groups, except for a small effect (p<0.03) on the Caregiver Assistance Mobility subscale between baseline and 9 months. The mean scores of both groups changed significantly on the Functional Skills Scales (p<0.001) and Caregiver Assistance Scales (p<0.02) of the PEDI after the 6-month intervention. There was no additional statistically significant change on the PEDI during the follow-up period from 6 to 9 months. A subgroup effect was found for age (p<0.001), with children younger than 3 years changing significantly more than older children. GMFCS level at baseline did not influence the amount of change on the PEDI scales. There were no significant differences between the treatment groups on the GMFM, range of motion measures, APCP or FES assessments. For the GMFM, there was a significant change over time from baseline to 6 months (p<0.001) and no significant change between 6 and 9 months. There was no adverse side effect as range of motion did not decrease in either group. Hip abduction increased significantly (p<0.01) at the 9-month assessment for both groups. For the APCP, significant changes for both treatment groups were found between baseline and 6 months for play intensity (p<0.04), physical activity intensity and diversity (p<0.001), and total score intensity (p<0.01). INTERPRETATION: This study shows that child- or context-focused therapy approaches are equally effective and that frequency of intervention may be a critical component of successful intervention. Further evaluation is required to identify the various 'dose-response' relations of amount of treatment and changes in functional abilities.

Exploring issues of participation among adolescents with cerebral palsy: what's important to them?

The purpose of this cross-sectional study was to determine what participation issues are important to adolescents with cerebral palsy (CP). Two hundred and three adolescents with CP (mean age 16.0 ± 1.8 years) were assessed using the Canadian Occupational Performance Measure (COPM). This was done through semistructured interviews by trained physical and occupational therapists. Adolescents responded either directly (n = 144) or through a parent or a caregiver (n = 59) if they were unable to communicate. Issues were extracted from completed questionnaires and coded under three COPM categories (self-care, productivity, and leisure) and 16 subcategories. There was no association between the total number of issues identified and gender (p = .99), age (p = .88), type of respondent (adolescents versus parent) (p = .27), Gross Motor Function Classification System (GMFCS) level (p = .93), or 66-item Gross Motor Function Measure (GMFM-66) score (p = .45). The issues identified most frequently were related to active leisure (identified by 57% of participants), mobility (55%), school (48%), and socialization (44%). Interventions aimed at improving participation among adolescents with physical disabilities, such as CP, should be directed towards these four key areas. Health care professionals should also recognize and consider the interaction of person and environment when addressing issues related to participation.

Knowledge brokering in children's rehabilitation organizations: perspectives from administrators.

INTRODUCTION: Administrators must balance the demands of delivering therapy services with the need to provide staff with educational opportunities promoting evidence-based practice. Increasingly, the use of multifaceted, interactive knowledge translation strategies, such as knowledge brokering, is suggested as an effective way to encourage clinician behavior changes and implement new knowledge. The purpose of this qualitative study is to describe administrators' perceptions of the successes and challenges in using a knowledge broker (KB) to promote the use of evidence-based measures of motor function for children with cerebral palsy. METHODS: Administrators from 27 pediatric facilities completed a semi-structured telephone interview following 6 months of knowledge brokering within their organizations. Using thematic analysis, interview transcripts were reviewed to identify common themes. RESULTS: Six interview themes were identified: "Efficient and Effective," "Stimulating Peer-to-Peer Learning Environment," "Committed and Respected Knowledge Brokers," "Sharing Beyond," "Organizational Beliefs and Values," and "The Dilemma of Moving Forward". Administrators were positive about the KB experience, acknowledging its efficiency and effectiveness. They commented on the stimulating peer-to-peer and interdisciplinary learning environment that the KB process encouraged. Administrators referred to their organizational beliefs and values when discussing their need to make priorities for limited resources, which influenced their decisions about whether to continue with a KB after the study was completed. DISCUSSION: Although administrators were philosophically supportive of knowledge brokering, they identified funding and resource constraints and the absence of evidence of the effectiveness of knowledge brokering as major barriers to the continuation of a KB role in their facility.

A staged approach for identifying children with developmental coordination disorder from the population.

The purpose of this study was to describe the motor, attention and intellectual characteristics of a population-based sample of children first screened for motor impairment and to discuss the recruitment and identification methods employed. A two stage cross-sectional, school-based survey was conducted to screen for children with motor coordination difficulties and to identify children with an existing diagnosis of attention deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD). The identified children, and a random sample of typically developing children, were assessed to confirm or rule out the presence of developmental coordination disorder (DCD). Six thousand four hundred and seventy five children were invited to participate; 2943 children, with parental consent, completed the initial screening process. Two hundred eighty four children with possible motor impairment were identified. The parents of 113 children consented to a full assessment. Sixty eight children of the 113 children met diagnostic criteria for DCD, and 26 also had ADHD. Twenty eight of the 55 children who screened in with a diagnosis of ADHD were subsequently found to have DCD. The total number of children with confirmed characteristics of DCD was reduced after application of DCD diagnostic criteria. This study differs from others with regard to the additional screening for children with ADHD/ADD. The second stage assessment notably increased the number of children identified with both ADHD and DCD.

Using knowledge brokers to facilitate the uptake of pediatric measurement tools into clinical practice: a before-after intervention study.

BACKGROUND: The use of measurement tools is an essential part of good evidence-based practice; however, physiotherapists (PTs) are not always confident when selecting, administering, and interpreting these tools. The purpose of this study was to evaluate the impact of a multifaceted knowledge translation intervention, using PTs as knowledge brokers (KBs) to facilitate the use in clinical practice of four evidence-based measurement tools designed to evaluate and understand motor function in children with cerebral palsy (CP). The KB model evaluated in this study was designed to overcome many of the barriers to research transfer identified in the literature. METHODS: A mixed methods before-after study design was used to evaluate the impact of a six-month KB intervention by 25 KBs on 122 practicing PTs' self-reported knowledge and use of the measurement tools in 28 children's rehabilitation organizations in two regions of Canada. The model was that of PT KBs situated in clinical sites supported by a network of KBs and the research team through a broker to the KBs. Modest financial remuneration to the organizations for the KB time (two hours/week for six months), ongoing resource materials, and personal and intranet support was provided to the KBs. Survey data were collected by questionnaire prior to, immediately following the intervention (six months), and at 12 and 18 months. A mixed effects multinomial logistic regression was used to examine the impact of the intervention over time and by region. The impact of organizational factors was also explored. RESULTS: PTs' self-reported knowledge of all four measurement tools increased significantly over the six-month intervention, and reported use of three of the four measurement tools also increased. Changes were sustained 12 months later. Organizational culture for research and supervisor expectations were significantly associated with uptake of only one of the four measurement tools. CONCLUSIONS: KBs positively influenced PTs' self-reported knowledge and self-reported use of the targeted measurement tools. Further research is warranted to investigate whether this is a feasible, cost-effective model that could be used more broadly in a rehabilitation setting to facilitate the uptake of other measurement tools or evidence-based intervention approaches.

Promoting the use of measurement tools in practice: a mixed-methods study of the activities and experiences of physical therapist knowledge brokers.

BACKGROUND: The use of knowledge brokers (KBs) has been recommended as a mechanism to facilitate the use of research evidence in clinical practice. However, little has been written regarding the practical implementation of the KB role. OBJECTIVES: This article (1) describes the brokering activities of 24 pediatric physical therapist KBs (in Ontario, Alberta, and British Columbia, Canada), and (2) reports KBs' perceptions of the utility of their role and their experiences with the brokering process. DESIGN: A mixed-methods research design was used in this investigation, which was part of a larger knowledge translation (KT) study that demonstrated the effectiveness of using KBs to implement a group of evidence-based measurement tools into practice. METHODS: The KBs completed weekly activity logs, which were summarized and described. Semi-structured telephone interviews with KBs were analyzed qualitatively to provide insight into their perceptions of their role and the brokering process. Major interview themes were identified and verified through member checking. RESULTS: Brokering activities varied considerably as KBs adapted to meet the needs of their colleagues. The KBs indicated that they highly valued the connection to the research community and spoke of the enthusiastic engagement of their physical therapist colleagues (and others in their organization) in the brokering process. They discussed the importance of understanding the practice context and organizational factors that could affect knowledge transfer. The KBs spoke of the need to dedicate time for the role and had a strong sense of the supports needed to implement a KB role in future. CONCLUSIONS: Considerable variation in brokering activities was demonstrated across KB participants. The KBs perceived their role as useful and indicated that organizational commitment is crucial to the success of this KT strategy.

Development and validation of item sets to improve efficiency of administration of the 66-item Gross Motor Function Measure in children with cerebral palsy.

AIM: To develop an algorithmic approach to identify item sets of the 66-item version of the Gross Motor Function Measure (GMFM-66) to be administered to individual children, and to examine the validity of the algorithm for obtaining a GMFM-66 score. METHOD: An algorithmic approach was used to identify item sets of the GMFM-66 (GMFM-66-IS) using data from 95 males and 79 females with cerebral palsy (CP; mean age 14y 7mo, SD 1y 8mo, range 12y 7mo to 17y 8mo). The GMFM-66-IS scores were then validated using combined data from three Dutch studies involving 134 males and 92 females with CP (mean age 7y, SD 4y 6mo, range 1y 4mo to 13y 8mo), representing all levels of the Gross Motor Function Classification System. RESULTS: The final algorithm contains three decision items from the GMFM-66 that determine which one of four item sets to administer. The GMFM-66-IS has excellent agreement with the full GMFM-66 both at a single assessment (intraclass correlation coefficient [ICC]=0.994, 95% confidence intervals [CI] 0.993-0.996) and across repeat assessments (ICC=0.92, 95% CI 0.89-0.95). INTERPRETATION: The GMFM-66-IS is a promising alternative to the full GMFM-66. Users should be consistent in their choice of measure (GMFM-66 or GMFM-66-IS) on repeat testing and clearly identify which method was used.

Stability and decline in gross motor function among children and youth with cerebral palsy aged 2 to 21 years.

This paper reports the construction of gross motor development curves for children and youth with cerebral palsy (CP) in order to assess whether function is lost during adolescence. We followed children previously enrolled in a prospective longitudinal cohort study for an additional 4 years, as they entered adolescence and young adulthood. The resulting longitudinal dataset comprised 3455 observations of 657 children with CP (369 males, 288 females), assessed up to 10 times, at ages ranging from 16 months to 21 years. Motor function was assessed using the 66-item Gross Motor Function Measure (GMFM-66). Participants were classified using the Gross Motor Function Classification System (GMFCS). We assessed the loss of function in adolescence by contrasting a model of function that assumes no loss with a model that allows for a peak and subsequent decline. We found no evidence of functional decline, on average, for children in GMFCS Levels I and II. However, in Levels III, IV, and V, average GMFM-66 was estimated to peak at ages 7 years 11 months, 6 years 11 months, and 6 years 11 months respectively, before declining by 4.7, 7.8, and 6.4 GMFM-66 points, in Levels III, IV, and V respectively, as these adolescents became young adults. We show that these declines are clinically significant.