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• W2219141973 abstract "SIR–The purpose of this communication is to share our experiences of establishing consensus classifications between trained research service providers and parents of children with cerebral palsy (CP) using the Gross Motor Function Classification System (GMFCS),1 the Manual Ability Classification System (MACS),2 and the Communication Function Classification System (CFCS).3 We anticipate that our interim solutions for dealing with situations in which consensus was not achieved might contribute to the establishment of ‘current best practices’ in obtaining consistent consensus classifications internationally. This work is conducted in the context of a multi-site international study on ‘Developmental Trajectories of Impairments, Health Conditions and Participation of Children with Cerebral Palsy’ (short title: On Track Study). In previous work, we established an understanding of the child, family, and service factors that contribute to motor development,4 self-care,5 and participation (under review) of two functionally distinct subgroups of children with CP. To assist with planning for individualized care to optimize these outcomes, the next stage in our research is to describe the developmental trajectories (both longitudinal growth and centile curves) of change in balance, limitations of range of motion, strength and endurance, and number and impact of associated health conditions, as well as participation in self-care and recreational activities. We plan to present these trajectories using a combination of the GMFCS, MACS, and CFCS levels. The GMFCS, initially designed for service providers to classify usual motor performance of children with CP, was later validated for completion by parents. Both the MACS2 and the CFCS3 were developed for service providers to use in collaboration with parents. Acknowledging the importance of both parent and service provider perspectives in classifying the full range of usual ability across settings, we have developed a consensus approach to classification rather than comparing independent classifications. We have data from the first time point of our longitudinal study from parents of 671 children with CP (56% male) between 2 years and 12 years of age (average 6y 3mo, SD 31mo) enrolled in the On Track Study using convenience sampling from a variety of clinical settings in Canada and the US. Of the respondents, 88% were mothers; 77% had some form of post-secondary education. Ninety trained and reliable physical or occupational therapists provided service provider perspectives. Ethical approval was provided by the Health Sciences Research Ethics Board at Western University and similar ethics boards at McMaster University, Drexel University, and the University of Washington (as well as Mercer University and Oklahoma University of Health Sciences) and multiple agencies across all participating sites (http://www.canchild.ca/en/ourresearch/on_track_study.asp). All ethical recommendations have been adhered to. Signed informed consent/assent was obtained from each parent/child participant prior to data collection; all consented to data being used in publications. Parents were asked to complete the GMFCS, MACS, and CFCS prior to a therapist visit. During the visit, parents and therapists discussed the classifications and the therapist documented: (1) immediate agreement with the parent, (2) consensus with the parent after discussion, or (3) disagreement with the parent. We used percentage agreement to describe the proportion of cases in which a consensus classification was ultimately reached. Consensus classifications were reached 97.8%, 96.7%, and 94.5% of the time for the GMFCS, MACS, and CFCS respectively. Table 1 provides details of the pattern of consensus ratings and disagreements. Notably, all GMFCS disagreements were within one level, and all but three and 10 disagreements for the MACS and CFCS respectively, were within one level. Percentage agreement for levels I and II versus III, IV, and V (i.e. the same functional dichotomy used in previous work4, 5) was higher for the more functional group (levels I and II) by 1.1% (GMFCS), 2% (MACS) and 4% (CFCS), with only the CFCS reaching statistical significance (χ2=4.62, df=1, p=0.03). We generated guidelines to reconcile disagreements for research purposes. Fundamentally, we relied on parents’ classifications (they know their children best, see them in multiple settings, and are most able to describe usual performance) unless the therapist provided compelling comments. Reasons to accept the therapists’ ratings included the following: the therapists’ descriptions of capability were lower than parent-reported performance; the incorrect age band was used for the GMFCS; therapists provided information that the parent was not ready to discuss reconciliation of disagreement when the therapist classified a child at a less functional level than the parent did; parents’ desire to classify each hand separately or not recognizing alternative ways of using the hands for the MACS; and for the CFCS, some parents appeared to overestimate children's communication performance with unfamiliar partners. Based on our experience, therapists and our sample of predominantly mothers with relatively high levels of education were able to come to consensus on GMFCS, MACS, and CFCS classifications frequently. In most cases, consensus agreement can be readily obtained, and when there is disagreement further collaboration is encouraged, either at the time of classification or in future. We thank our fellow On Track Study investigators: Lisa Chiarello, Lynn Jeffries, Alyssa Fiss, Steve Hanna, and Jan Willem Gorter. This work was (partially) supported through the Canadian Institutes of Health Research (MOP # 119276, 2012–2017) and the Patient Centred Outcomes Research Institute (PCORI) Award (# 5321, 2013–2016). The funders have had no involvement in study design, data collection, data analysis, manuscript preparation, and/or publication decisions. All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centred Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee." @default.
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• W2219141973 date "2015-12-23" @default.
• W2219141973 modified "2023-10-05" @default.
• W2219141973 title "Consensus classifications of gross motor, manual ability, and communication function classification systems between therapists and parents of children with cerebral palsy" @default.
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• W2219141973 doi "https://doi.org/10.1111/dmcn.12933" @default.
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