- Email: [email protected]
Agreement between parents and clinicians on the communication function levels and relationship of classification systems of children with cerebral palsy
Accepted Manuscript Agreement between parents and clinicians on the communication function levels and relationship of classification system of children with cerebral palsy Akmer Mutlu, Özgün Kaya Kara, Ayşe Livanelioğlu, Sevilay Karahan, Halil Alkan, Bilge Nur Yardımcı, Mary Jo Cooley Hidecker PII:
S1936-6574(17)30213-3
DOI:
10.1016/j.dhjo.2017.11.001
Reference:
DHJO 654
To appear in:
Disability and Health Journal
Received Date: 21 July 2017 Revised Date:
12 October 2017
Accepted Date: 11 November 2017
Please cite this article as: Mutlu A, Kara ÖK, Livanelioğlu A, Karahan S, Alkan H, Yardımcı BN, Hidecker MJC, Agreement between parents and clinicians on the communication function levels and relationship of classification system of children with cerebral palsy, Disability and Health Journal (2017), doi: 10.1016/j.dhjo.2017.11.001. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT DO THE PARENTS AND CLINICIANS AGREE FOR THE COMMUNICATION FUNCTION LEVELS OF CHILDREN WITH CEREBRAL PALSY? Akmer Mutlu1, Özgün Kaya Kara1, Ayşe Livanelioğlu1, Sevilay Karahan2, Halil Alkan1,
Affiliations 1
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Bilge Nur Yardımcı1, Mary Jo Cooley Hidecker3
Hacettepe University, Faculty of Health Sciences, Department of Physiotherapy and
Rehabilitation, 06100 Samanpazari, Ankara, TURKEY. Email: [email protected], [email protected],
[email protected],
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[email protected],
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[email protected], [email protected]
Faculty of Medicine, Department of Biostatistics, Hacettepe University, 06100 Samanpazari,
Ankara, Turkey. Email: [email protected] 3
Division of Communication Disorders, University of Wyoming, Dept. 3311 ~, 1000 E.
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University Avenue, Laramie, WY 82071, USA. Email: [email protected]
Number of references: 30
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Number of figures/tables: 6
The authors declare that there is no conflict of interest and funding. Ethical approval was obtained from the Hacettepe University Noninterventional Clinical Researchs Ethics Committee (GO 15/436). Corresponding Author: Akmer MUTLU Hacettepe University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Samanpazari, Ankara, Turkey 06100 Business phone: 00 90 312 305 25 25 (extension: 201)
ACCEPTED MANUSCRIPT Cellular phone: 00 90 532 204 92 24 Fax: 00 90 312 305 20 12
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E-mail: [email protected] , [email protected]
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AGREEMENT BETWEEN PARENTS AND CLINICIANS ON THE COMMUNICATION FUNCTION LEVELS AND RELATIONSHIP OF CLASSIFICATION SYSTEM OF CHILDREN WITH CEREBRAL PALSY.
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Abstract
Background: Functional classification systems have generally been used by clinicians and recently by parents to classify various functions of children with cerebral palsy (CP).
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Objective: This study evaluated the agreement between clinicians and parents when classifying the communication function of children with CP using the Communication
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Function Classification System (CFCS). In addition, the relationships between the Gross Motor Function Classification System – Expanded and Revised (GMFCS-E&R), the Manual Ability Classification System (MACS), and CFCS were investigated. Methods: This study was a prospective cross-sectional study and included 102 children aged
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4-18 years with CP and their parents. The parents and clinician classified the communication of children by using the Turkish language version of CFCS. Furthermore GMFCS-E&R and MACS were used for classification only by the clinician.
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Results: The weighted Kappa agreement between CFCS results of the parents and clinicians was 0.95 (95% CI 0.95 – 0.96, p<0.001). GMFCS-E&R levels were highly correlated with
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CFCS levels (r=0.78 (95%CI 0.68-0.84, p<0.001)). MACS and CFCS results were also highly correlated (r=0.73 (95%CI 0.63-0.81, p<0.001). Conclusion: The child's communication was classified as indicating higher functioning by the parents compared with the clinicians. The excellent agreement between parents and clinicians with the Turkish language version of CFCS for children with CP indicated that parents and clinicians could use the same language while classifying the communication function of children.
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ACCEPTED MANUSCRIPT Key words: Cerebral Palsy; Functional Classification Systems; Communication; Parents; Agreement
Functional classification systems have generally been used by clinicians and recently
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by parents to classify different functions of children with cerebral palsy (CP) in terms of the activity/participation aspect of the International Classification of Functioning, Disability and Health (ICF)1-5. The Gross Motor Function Classification System – Expanded and Revised
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(GMFCS-E&R), Manual Ability Classification System (MACS) and Communication Function Classification System (CFCS), are three evidence-based classification systems used
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to classify children through five levels from Level I to Level V, in which level I is the least affected and level V is the most affected by the disability3-6. GMFCS-E&R is used to classify the gross motor movement, MACS for the manual function, and CFCS for the communication function of children with CP3-5. These systems also aim to provide a common language
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between clinicians, researchers, and families for a better understanding of the child’s functional performance, clinical decision making, and determining objectives for the child within the framework of ICF1,2-5.
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Families are a very important part of the rehabilitation team and are actively involved in the treatment. Family-assessed measurements or family reports have recently become more
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popular and important. It would also be an advantage for families to monitor their children’s daily performance from the activity and social participation aspects as compared with the clinicians and researchers who can only observe the child in the clinical setting for a limited time7-9. It is therefore a necessity to examine the psychometric properties of these systems that can also be used by the parents, such as validity and reliability. Parents can classify their own child’s function in a more efficient and inexpensive way and from a broader perspective that can provide valuable information to be used in the clinical and research fields of CP5,7,10. In
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ACCEPTED MANUSCRIPT addition, the parental classification may also reflect awareness levels regarding the functional levels of their children7,10. Previous studies have shown a high degree of agreement between GMFCS-E&R and MACS classifications as determined by parents and clinicians
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. These results indicate that
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parents, like clinicians, could objectively classify the gross motor and manual functions of their children with CP and supported further research on the parents’ perception of the communication functions of their children. Currently, CFCS has been translated into 15
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different languages worldwide11. Its validity and reliability have been assessed by studies in these languages, contributing important scientific knowledge to the literature11-13. In a recent
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study, the inter-rater reliability of the CFCS in Dutch between parents and speech language therapists was found to be fair12, while excellent agreement was found between health professionals and parents for the Farsi version13. There are no previous studies on the agreement between parents and clinicians in the Turkish language version of CFCS.
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Considering that the communication level of the child is classified according to the activity and participation in the environment and at home5, we planned this study assuming that the family could use the classification system in an accurate and effective manner. However, it is
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emphasized that it is quite important for a professional to monitor and record the progress of the child with treatment during epidemiological studies when classifying the communication
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function. The main principle for the continued progress of the child with CP is for the family to monitor, evaluate and properly respond to treatment results. An observant family is of vital importance in development of communication skills, just as with the fine motor skills13. The main purposes of this study were to evaluate the agreement between clinicians and parents when classifying the communication function of children with CP using the Turkish language Communication Function Classification System (CFCS) and also to
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ACCEPTED MANUSCRIPT investigate the relationship between GMFCS-E&R, MACS and CFCS in the spastic and dyskinetic types of CP. 1.Methods 1.1. Participants
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The children and their parents who were referred by a pediatric neurologist to our unit for physiotherapy and rehabilitation including a home exercise programme and family training were included as the participants.
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The inclusion criteria were children diagnosed with spastic or dyskinetic CP, who
and agreeing to participate in the study.
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were referred to our research center, between 4-18 years of age, with the parents volunteering
Children aged less than 4 years were not included as the optimum use of CFCS is for those aged 4 years and older. We included parents who had at least graduated from secondary school to compose a homogenous sample for the study. We choose this education level of the
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parents as well as families living in the big cities with moderate income levels. The exclusion criteria were not volunteering to participate in the study and not having a definite diagnosis of CP.
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Ethical approval was obtained from the Hacettepe University Noninterventional Clinical Research Ethics Committee (GO 15/436). Informed consent was obtained from the
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families and informed assent from the children older than 7 years of age after they were informed about the study.
1.2. Study Design/Study Setting A prospective cross-sectional study was planned to collect data. The three classification systems above are the main outcome measures of our follow-ups and have been utilized routinely in our clinical unit3-5.
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ACCEPTED MANUSCRIPT Data were collected from the clinicians and the parents. The first author, a physiotherapist with 17 years of experience in pediatric rehabilitation, classified the children with GMFCS-E&R, MACS and CFCS. The parents were informed about the study by the second author and instruction leaflets were given to the parents. We invited only one parent
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(mother or father) with the highest education status to the study and parents were given adequate time for the classification. We asked parents to classify their children’s communication functions by selecting the “most representative” level of the children. Parents
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were also informed to select “the lower” level to classify their child if they thought that the communication functions of their children were represented by two consecutive levels.
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1.3. Classification System Instruments
1.3.1. Communication Function Classification System (CFCS)
The Communication Function Classification System (CFCS) classifies everyday communication performance by providing 5 levels from Level I to Level V5,11. (Level I:
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Effective Sender and Receiver with unfamiliar and familiar partners, II: Effective but slower paced Sender and/or Receiver with unfamiliar and/or familiar partners, III: Effective Sender and Receiver with familiar partners, IV: Inconsistent Sender and/or Receiver with familiar
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partners, V: Seldom Effective Sender and Receiver even with familiar partners). Distinctions between the levels are based on the performance of the sender and receiver roles, the pace of
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communication, and the type of conversational partner. The difference between Levels I and II is the pace of the conversation. In Level I, the person communicates at a comfortable pace with little or no delay in order to understand, compose a message, or correct a misunderstanding. In Level II, the person needs extra time, at least occasionally. The differences between Levels II and III concern the pace and the type of conversational partners. In Level II, the person is an effective sender and receiver with all conversational partners, but pace is an issue. In Level III, the person is consistently effective with familiar conversational
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ACCEPTED MANUSCRIPT partners, but not with most unfamiliar partners etc. Although originally developed for individuals with CP, the valid and reliable classification tool of CFCS is now being used to describe the communication performance of individuals with any kind of disability5-11. The Turkish CFCS has been previously forward translated and back translated from the original
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English version14. The pediatric physiotherapist who classified the children had training on CFCS online (http://cfcs.us/?page_id=16)11 and had also discussed some cases with the CFCS developers, MJH and the colleagues during the translation phases.
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1.3.2. Gross Motor Function Classification System-Expanded & Revised (GMFCS-E&R) GMFCS-E&R, like CFCS and MACS, is an evidence-based classification tool
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including five levels from Level I to Level V. GMFCS-E&R is the expanded and revised version of GMFCS. An age band of 12 to 18 years was added to the GMFCS in classifying the gross motor performance2,3. The children were classified using the Turkish version of the GMFCS-E&R15,16.
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1.3.3. Manual Ability Classification System (MACS)
The MACS provides a systematic classification of children with a focus on using the both hands in daily living activities such as play and eating and can be used for children aged
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4-18 years. Usual performances are preferred rather than best abilities for the classification4. The children were classified by using the Turkish version of the MACS17. Cultural validation
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of the Turkish MACS has been conducted by Akpinar P et al18. 1.4. Statistical analysis
IBM SPSS Version 21.0 for Windows (SPSS Inc., Chicago, IL, USA) was used to
analysis of the data. Continuous variables were represented with mean ± standard deviation or median [min–max] as appropriate. Categorical variables were summarized as frequencies and percentages. Weighted Kappa coefficient (with 95% confidence intervals [CI]) was calculated to determine the agreement between the CFCS evaluation of parents and physiotherapists.
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ACCEPTED MANUSCRIPT The Kappa coefficient proposed by Cohen is a chance corrected measure of interobserver agreement. When the results of methods are measured on an ordinal scale it may preferable to give different weights to the disagreements depending on the magnitude. This modification to Cohen’s Kappa is called weighted Cohen’s Kappa19. The weighted Kappa is calculated using
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a predefined table of weights that measure the degree of disagreement between the two raters and the higher the disagreement the higher the weight. Interpretation of the weighted Kappa coefficient is similar to the Kappa coefficient. Agreement according to Kappa statistics were
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identified as follows: <0.20, poor; 0.21 to 0.40, slight agreement; 0.41 to 0.60, fair; 0.61 to 0.80, good; 0.81 to 0.91, very good; and >0.92, excellent agreement19. Correlations between
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GMFCS-E&R, MACS and CFCS measurements were determined by the Spearman correlation coefficient. The Spearman correlation was identified as follows: ≥0.80, very strong; 0.80 to 0.60, strong; 0.60 to 0.40, moderate; 0.40 to 0.20, weak; <0.20, very weak20. Differences between CFCS classification of the clinical type and extremity distribution
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groups was evaluated by the Mann-Whitney U and Kruskal-Wallis tests. The significance level was determined as p<0.05. The power of the study was 85.5% and agreement between
2. Results
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the families and physiotherapists good with a difference of 0.15 at the most.
A total of 102 participants consisting of children with CP and one of their parents were
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included in the study. The mean age of the children was 9.3 ± 3.7 years with a range of 4-18 years (55 males and 47 females). Ninety-three (91.2%) children had spastic CP and 9 (8.8%) children had dyskinetic CP. When considering limb distribution, 41.9% of the children had hemiplegia, 30.1% had diplegia, and 28.0% had quadriplegia. The characteristics of children with CP as well as the demographic characteristics of the parents are reported in Table 1. There were seventy-four (72.5%) mothers and 28 (27.5%)
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ACCEPTED MANUSCRIPT fathers. The mean age was 36.0 ± 7.0 years for the mothers and 39.6 ± 6.9 years for the fathers. Table 2 represents the CFCS scores provided by physiotherapists and parents. Absolute disagreements have been highlighted for clarity. Thirteen (12.74 %) of the 102
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children were classified differently by parents compared with the clinicians and parents were more likely (11/13, 84.6%) to classify the child’s communication as higher functioning than the physiotherapist. Eleven (10.7%) of the children were classified just one level different
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between parents and clinicians. The weighted Kappa coefficient between physiotherapists and parents was 0.95 (95% confidence interval ([CI]) 0.95 to 0.96) for CFCS and indicated 87.3%
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overall agreement.
In addition, the correlation of CFCS between GMFCS and MACS was examined in the study and presented in Table 3 and 4. The Spearman correlation coefficient between CFCS and GMFCS was 0.77 (95% CI 0.68 – 0.84, p<0,001). The correlation between CFCS
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and MACS was found to be 0.73 (95% CI 0.63 – 0.81, p<0,001).
CFCS of the children according to clinical type and extremity distribution of CP is presented with details in Figure 1. The extremity distribution of the children affected the
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3. Discussion
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CFCS level (p<0,001), and CFCS levels were higher in the quadriplegic group (Table 5).
Classification systems have generally been used by clinicians and parents to classify
various functions of children with CP. Recent studies have focused on psychometric properties of reliability and validity of different language versions of the CFCS, including parental classifications within them7,9,12,13,21. This is the first study to investigate the agreement between parents and clinicians using the Turkish language version of CFCS, and it aims to determine the relationships between the three classification systems in the spastic and dyskinetic types of CP.
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ACCEPTED MANUSCRIPT In contrast to previous studies, our results showed excellent agreement between clinicians and parents for CFCS. Zwart et al. found that the inter-rater reliability of the Dutch version of CFCS had fair agreement between parents and speech-language therapists with 31.1% of the parents classifying their children as more functional compared to the
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therapists12. Virella et al. also determined fair agreement in CFCS between parents and health professionals22. In the study by Hidecker et al., the inter-rater reliability between parents and health professionals was found to be moderate, with parents tending to classify their
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children’s communication more functional than the health professionals5. On the other hand, in a study by Soleymani et al., the inter-rater reliability was good (0.74) between parents and
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occupational therapists and very good (0.88) between parents and speech language pathologists (SLP)13. The study by Choi et al., in 2017 the Korean version of the CFCS was in accordance with the Farsi version of the CFCS23. In this study, Korean version of the CFCS was good between parents and the physiatrist (ƙ = 0.61, 95% CI [0.46, 0.77]) and between the
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SLP and parents (ƙ = 0.63, 95% CI [0.47, 0.78])23. In our study, only thirteen (12.74 %) of the 102 children were classified differently by parents when compared with the clinician and the child's communication was classified as higher functioning by the parents compared with the
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clinician’s classification in 11 of these 13 (84.6%) patients, similar to a previous study by Hidecker et al.5. This higher functional classification of parents can be due to the parents
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underestimating the disability level of their child in general. In addition, parents see their children’s daily life performances for much longer periods than a clinicians who observes the child for only a limited time in a clinical setting or school so the families spend a long time (24 hours a day) with their children and may therefore be selecting the appropriate classification. When parents make a decision about their child's functional levels, they are doing it across a broader spectrum of environments than the clinicians. But parents may sometimes also have a different perception of “more functional”. Some families tend to
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ACCEPTED MANUSCRIPT perceive their children as functioning at a higher level than they actually are due to a protective approach. To prevent any confusion related to these factors, we wanted parents to select the “lowest level” if they vacillated between two choices. A possible reason for the excellent agreement observed could be the high education
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level of the parents included in this study. We included parents of similar educational level to obtain a homogenous study group and prevent possible bias as much possible while classifying the communication function of the children. We observed that parents felt in
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collaboration and compatible with physiotherapists during the study procedure.
CFCS classification agreement between the parents and the physiotherapist was
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excellent in level I, very good in levels II and III, fair in level IV, and good in level V. The lower agreement in level IV could be due to the difficulty in differentiating levels III and IV as also clearly mentioned in the Zwart et al. study12. Level I represents the mildest and Level V the most affected level in CFCS. Parents may therefore find it easier to distinguish lower
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levels. Some parents stated experiencing difficulty and indecision related to differentiating the levels, especially levels III and IV, during the classification. Our study included all three-classification systems: CFCS, GMFCS–E&R and MACS.
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We included children older than 4 years of age as the MACS cannot be used under this age. A family reliably classifying CFCS, GMFCS–E&R and MACS provides data collection for the
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documentation of their children and this is usually a less expensive and quicker method than an assessment by a clinician in a clinical setting to classify the functions for children with CP5,7-9. We found a correlation between the three classification systems as was the case in the Compagnone et al study24. In the study conducted by Hidecker et al., there were strong or moderate correlations between these three classification systems25. A study in 2017 by Piscitelli et al. to assess the situation in a developing country included 49 CP individuals and as a result there was a strong correlation between GMFCS and MACS26. Our findings
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ACCEPTED MANUSCRIPT therefore support the effectiveness of using three functional classifications to better determine the functional profile of children with CP in a quick and inexpensive manner. In a previous study of 68 children with CP, including spastic and dyskinetic children, the results indicated that children with dyskinetic CP had the least effective communication
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while communication levels of children showed significant differences between the CP types27. In addition, Coleman et al. found that children with spasticity were more likely to have poorer functional communication on univariate analysis28. Another study by Monbaliu et
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al. with children with dyskinetic CP also found a fair relationship (rs = 0.49) between GMFCS and CFCS29. Both outcomes are related to the location of the brain lesion with children with
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deep grey matter injury having poorer communication30. In our study, nine of the children were of the dyskinetic type but an appropriate statistical analysis could not be performed to compare the levels of spastic and dyskinetic types due to the low number of participants; however, the dyskinetic children were classified in levels IV and V, i.e., the most severe
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levels. A review is reported that impairment of speech is more common in dyskinetic CP and tetraplegic more than diplegic31. The results of Coleman et al. confirmed our findings and indicated that children with more severe gross motor impairment showed poorer and less
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effective communication, while children with mild motor impairment had better and more effective communication32. However, current findings show that individuals with CP who
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have severe influence on performing motor activities have good communication skills33. In our study, although small portion of the CP with GMFCS – E&R level IV and V were found to have a better level of CFCS and MACS, in general children with severe motor influence were found to be more affected by communication skills. For this reason it is thought that the number of children with CP is low and most of the individuals involved in the study are GMFCS I - II.
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ACCEPTED MANUSCRIPT In Bertule et al.'s 2014 study, children’s functional profiles were classified by both parents and professionals34. This approach can be seen as both a strength and a limitation of the study. In some studies, health professionals decide on the level of the child by their own observation and also asking the opinions of the parents34,35. In our opinion, this makes the
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agreement between health professionals and parents more important and relevant. In the same study, the CFCS level of the children was found to be a strong determinant of unmet needs of families who have children with CP in the preschool period34.
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Our study also had some limitations. Although our results indicated excellent agreement, the study design would have been much stronger if multiple clinicians from a
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variety of different fields and parents with a broader range of educational backgrounds were involved. In addition, it would have been better to compare the classifications of fathers and mothers but only one parent was invited. Comparison of our results with various aspects of the literature support the notion that family results can be accurate after the socioeconomic
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level is homogenized but we feel larger samples are needed to confirm the matter. Asking parents about their children has potential advantages, such as providing opportunities to develop a bridge for a common language between professionals and parents
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and also indicating their “degree of awareness” of their child's functional level as well. Parents also stated that they felt they were collaborating better with the healthcare
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professionals during the study. A similar feeling was also experienced in our previous GMFCS and MACS study with the parents8. These results suggest that using the Turkish CFCS in clinical practice can be done easily and quickly, and the parents can contribute to classifying the communication function of their children. 4. Conclusion The communication skills of the children were classified as higher functioning by the parents compared with the clinician’s classification. The excellent agreement between parents and
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ACCEPTED MANUSCRIPT clinicians for the Turkish language version of CFCS for children with CP indicated that parents and clinicians could talk in the same language when classifying the communication function of children with CP. Further research is required to understand the reasons for any difference between parents and clinicians in classifying functional levels using GMFCS–
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E&R, MACS, and/or CFCS.
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ACCEPTED MANUSCRIPT References 1-World Health Organization. International Classification of Functioning, Disability, and Health-Children and Youth, Geneva: WHO Press; 2007. 2- Palisano R, Rosenbaum P, Walter S. Development and reliability of a system to classify
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ACCEPTED MANUSCRIPT 19- Fleiss JL, Levin B, Paik MC. The Measurement of Interrater Agreement. In: Shewart MC, Wilks SS (eds). Statistical methods for rates and proportions. 3rd ed. New Jersey: John Wiley and Sons; 2003;608-610. 20- Altman D. Practical Statistics for Medical Research. 2nd edn. Chapman and Hall: London,
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function classification system (CFCS). Res Dev Disabil. 2014;35:2651-7. 25- Hidecker MJ, Ho NT, Dodge N, et al. Inter-relationships of functional status in cerebral
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palsy: analyzing gross motor function, manual ability, and communication function classification systems in children. Dev Med Child Neurol. 2012 Aug;54(8):737-42. 26- Piscitelli D, Vercelli S, Meroni R et al. Reliability of the gross motor function classification system and the manual ability classification system in children with cerebral palsy in Tanzania. Dev Neurorehabil. 2017 Jul;10:1-7. 27- Himmelmann K, Lindh K, Hidecker MJ. Communication ability in cerebral palsy: a study from the CP register of western Sweden. Eur J Paediatr Neurol. 2013;17:568-74.
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ACCEPTED MANUSCRIPT 28- Coleman A, Weir K, Ware RS, Boyd R. Predicting functional communication ability in children with cerebral palsy at school entry. Dev Med Child Neurol. 2015;57:279-85. 29- Monbaliu E, De La Peña MG, Ortibus E, et al. Functional outcomes in children and young people with dyskinetic cerebral palsy. Dev Med Child Neurol. 2017;59(6):634-640.
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30- Legault G, Shevell MI, Dagenais L; Quebec Cerebral Palsy Registry (Registre de la paralysie cérébrale au Québec [REPACQ]) Consortium. Predicting comorbidities with neuroimaging in children with cerebral palsy. Pediatr Neurol. 2011;45:229-32.
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31- Odding E, Roebroeck ME, Stam HJ. The epidemiology of cerebral palsy: incidence, impairments and risk factors. Disabil Rehabil. 2006;28(4):183-91.
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32- Coleman A, Weir KA, Ware RS, Boyd RN. Relationship between communication skills and gross motor function in preschool-aged children with cerebral palsy. Arch Phys Med Rehabil. 2013;94:2210-7.
33- Geytenbeek J. Differentiating between language domains, cognition, and communication
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in children with cerebral palsy. Dev Med Child Neurol. 2016;58:535–36. 34- Bertule D, Vetra A. The family needs of parents of preschool children with cerebral palsy:
2014;50:323-8.
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the impact of child's gross motor and communications functions. Medicina (Kaunas).
35- Harvey AR, Randall M, Reid SM, et al. Children with cerebral palsy and periventricular
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white matter injury: does gestational age affect functional outcome? Res Dev Disabil. 2013;34:2500-6.
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ACCEPTED MANUSCRIPT %
Male
55
53,9
Female
47
46,1
Spastic
93
91,2
Dyskinetic
9
8,8
Extremity
Hemiplegic
39
41,9
distribution
Diplegic
28
30,1
(n=93)
Quadriplegic
26
28,0
GMFCS
Level I
42
41,2
Level II
18
Level III
9
Level IV
13
Level V
20
19,6
Level I
44
43,1
Level II
22
21,6
Level III
6
5,9
Level IV
13
12,7
MACS
Level V
74
72,5
28
27,5
30
29,4
High School
39
38,2
University
33
32,4
Education
Fathers
Secondary School
18
17,6
High School
39
38,2
University
45
44,1
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Secondary
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Mothers
Education
12,7
16,7
Respondent
Father
8,8
17
Parents of children with CP
Mother
17,6
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Clinical type
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Gender
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n
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Table 1 – Demographic characteristics of children with Cerebral Palsy and their parents
School
GMFCS: Gross Motor Function Classification System, MACS: Manual Ability Classification System CFCS: Communication Function Classification System
ACCEPTED MANUSCRIPT Table 2 – Agreement between physiotherapist and parents on Communication Function Classification System CFCS-Parents III
IV
V
Total
I
51b
1a
0
0
0
52
II
3a
14b
0
0
0
17
III
0
1a
6b
0
IV
0
1
3a
6b
V
0
0
1
2a
54
17
10
8
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Total
II
Weighted Kappa coefficient: 0.957 (%95 CI 0.952 – 0.964, p<0,001), overall agreement: %87,3 = represent one level difference between PT and parents
b
= represent agreement between PT and parents
higlighted= represent the disagreements in all levels
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CFCS: Communication Function Classification System.
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a
0
7
1a
11
12b
15
13
102
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CFCS-PT
I
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GMFCS-PT IV
I
35
12
4
0
II
6
5
3
3
III
0
1
1
5
IV
1
0
1
4
V
0
0
0
1
42
18
9
13
V 1
52
0
17
0
7
5
11
14
15
20
102
Spearman correlation coefficient: 0.778 (%95 CI 0.688 – 0.845, p<0,001)
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GMFCS: Gross Motor Function Classification System, CFCS: Communication Function Classification System.
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Total
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III
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Total
II
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CFCS-PT
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MACS-PT IV
I
34
14
4
0
II
8
6
0
3
III
1
1
1
4
IV
1
1
1
4
V
0
0
0
2
44
22
6
13
V 0
52
0
17
0
7
4
11
13
15
17
102
Spearman correlation coefficient : 0.735 (%95 CI 0.631 – 0.813, p<0,001)
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CFCS: Communication Function Classification System, MACS: Manual Ability Classification System
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Total
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III
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Total
II
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CFCS-PT
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Table 5 –Effect of the clinical type and extremity distribution of CP on Communication Function Classification Sytem Z
p
Spastic
1 [1 – 5]
-3.063
0.002a
Dyskinetic
4 [2 – 5]
Extremity
Hemiplegic
1 [1 – 3]
-6.572
distribution
Diplegic
1 [1 – 4]
-5.384
Quadriplegic
4,5 [1 – 5]
p value for Mann Whitney U test
b
p value for Kruskal Wallis test, significant difference in quadriplegic
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CFCS: Communication Function Classification System.
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a
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Clinical type
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Median [Min – Max]
<0.001b
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ACCEPTED MANUSCRIPT
S1936-6574(17)30213-3
DOI:
10.1016/j.dhjo.2017.11.001
Reference:
DHJO 654
To appear in:
Disability and Health Journal
Received Date: 21 July 2017 Revised Date:
12 October 2017
Accepted Date: 11 November 2017
Please cite this article as: Mutlu A, Kara ÖK, Livanelioğlu A, Karahan S, Alkan H, Yardımcı BN, Hidecker MJC, Agreement between parents and clinicians on the communication function levels and relationship of classification system of children with cerebral palsy, Disability and Health Journal (2017), doi: 10.1016/j.dhjo.2017.11.001. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT DO THE PARENTS AND CLINICIANS AGREE FOR THE COMMUNICATION FUNCTION LEVELS OF CHILDREN WITH CEREBRAL PALSY? Akmer Mutlu1, Özgün Kaya Kara1, Ayşe Livanelioğlu1, Sevilay Karahan2, Halil Alkan1,
Affiliations 1
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Bilge Nur Yardımcı1, Mary Jo Cooley Hidecker3
Hacettepe University, Faculty of Health Sciences, Department of Physiotherapy and
Rehabilitation, 06100 Samanpazari, Ankara, TURKEY. Email: [email protected], [email protected],
[email protected],
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[email protected],
2
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[email protected], [email protected]
Faculty of Medicine, Department of Biostatistics, Hacettepe University, 06100 Samanpazari,
Ankara, Turkey. Email: [email protected] 3
Division of Communication Disorders, University of Wyoming, Dept. 3311 ~, 1000 E.
Word counts: 2881
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University Avenue, Laramie, WY 82071, USA. Email: [email protected]
Number of references: 30
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Number of figures/tables: 6
The authors declare that there is no conflict of interest and funding. Ethical approval was obtained from the Hacettepe University Noninterventional Clinical Researchs Ethics Committee (GO 15/436). Corresponding Author: Akmer MUTLU Hacettepe University, Faculty of Health Sciences, Department of Physiotherapy and Rehabilitation, Samanpazari, Ankara, Turkey 06100 Business phone: 00 90 312 305 25 25 (extension: 201)
ACCEPTED MANUSCRIPT Cellular phone: 00 90 532 204 92 24 Fax: 00 90 312 305 20 12
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E-mail: [email protected] , [email protected]
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AGREEMENT BETWEEN PARENTS AND CLINICIANS ON THE COMMUNICATION FUNCTION LEVELS AND RELATIONSHIP OF CLASSIFICATION SYSTEM OF CHILDREN WITH CEREBRAL PALSY.
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Abstract
Background: Functional classification systems have generally been used by clinicians and recently by parents to classify various functions of children with cerebral palsy (CP).
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Objective: This study evaluated the agreement between clinicians and parents when classifying the communication function of children with CP using the Communication
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Function Classification System (CFCS). In addition, the relationships between the Gross Motor Function Classification System – Expanded and Revised (GMFCS-E&R), the Manual Ability Classification System (MACS), and CFCS were investigated. Methods: This study was a prospective cross-sectional study and included 102 children aged
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4-18 years with CP and their parents. The parents and clinician classified the communication of children by using the Turkish language version of CFCS. Furthermore GMFCS-E&R and MACS were used for classification only by the clinician.
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Results: The weighted Kappa agreement between CFCS results of the parents and clinicians was 0.95 (95% CI 0.95 – 0.96, p<0.001). GMFCS-E&R levels were highly correlated with
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CFCS levels (r=0.78 (95%CI 0.68-0.84, p<0.001)). MACS and CFCS results were also highly correlated (r=0.73 (95%CI 0.63-0.81, p<0.001). Conclusion: The child's communication was classified as indicating higher functioning by the parents compared with the clinicians. The excellent agreement between parents and clinicians with the Turkish language version of CFCS for children with CP indicated that parents and clinicians could use the same language while classifying the communication function of children.
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ACCEPTED MANUSCRIPT Key words: Cerebral Palsy; Functional Classification Systems; Communication; Parents; Agreement
Functional classification systems have generally been used by clinicians and recently
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by parents to classify different functions of children with cerebral palsy (CP) in terms of the activity/participation aspect of the International Classification of Functioning, Disability and Health (ICF)1-5. The Gross Motor Function Classification System – Expanded and Revised
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(GMFCS-E&R), Manual Ability Classification System (MACS) and Communication Function Classification System (CFCS), are three evidence-based classification systems used
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to classify children through five levels from Level I to Level V, in which level I is the least affected and level V is the most affected by the disability3-6. GMFCS-E&R is used to classify the gross motor movement, MACS for the manual function, and CFCS for the communication function of children with CP3-5. These systems also aim to provide a common language
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between clinicians, researchers, and families for a better understanding of the child’s functional performance, clinical decision making, and determining objectives for the child within the framework of ICF1,2-5.
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Families are a very important part of the rehabilitation team and are actively involved in the treatment. Family-assessed measurements or family reports have recently become more
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popular and important. It would also be an advantage for families to monitor their children’s daily performance from the activity and social participation aspects as compared with the clinicians and researchers who can only observe the child in the clinical setting for a limited time7-9. It is therefore a necessity to examine the psychometric properties of these systems that can also be used by the parents, such as validity and reliability. Parents can classify their own child’s function in a more efficient and inexpensive way and from a broader perspective that can provide valuable information to be used in the clinical and research fields of CP5,7,10. In
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ACCEPTED MANUSCRIPT addition, the parental classification may also reflect awareness levels regarding the functional levels of their children7,10. Previous studies have shown a high degree of agreement between GMFCS-E&R and MACS classifications as determined by parents and clinicians
7,9
. These results indicate that
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parents, like clinicians, could objectively classify the gross motor and manual functions of their children with CP and supported further research on the parents’ perception of the communication functions of their children. Currently, CFCS has been translated into 15
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different languages worldwide11. Its validity and reliability have been assessed by studies in these languages, contributing important scientific knowledge to the literature11-13. In a recent
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study, the inter-rater reliability of the CFCS in Dutch between parents and speech language therapists was found to be fair12, while excellent agreement was found between health professionals and parents for the Farsi version13. There are no previous studies on the agreement between parents and clinicians in the Turkish language version of CFCS.
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Considering that the communication level of the child is classified according to the activity and participation in the environment and at home5, we planned this study assuming that the family could use the classification system in an accurate and effective manner. However, it is
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emphasized that it is quite important for a professional to monitor and record the progress of the child with treatment during epidemiological studies when classifying the communication
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function. The main principle for the continued progress of the child with CP is for the family to monitor, evaluate and properly respond to treatment results. An observant family is of vital importance in development of communication skills, just as with the fine motor skills13. The main purposes of this study were to evaluate the agreement between clinicians and parents when classifying the communication function of children with CP using the Turkish language Communication Function Classification System (CFCS) and also to
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ACCEPTED MANUSCRIPT investigate the relationship between GMFCS-E&R, MACS and CFCS in the spastic and dyskinetic types of CP. 1.Methods 1.1. Participants
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The children and their parents who were referred by a pediatric neurologist to our unit for physiotherapy and rehabilitation including a home exercise programme and family training were included as the participants.
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The inclusion criteria were children diagnosed with spastic or dyskinetic CP, who
and agreeing to participate in the study.
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were referred to our research center, between 4-18 years of age, with the parents volunteering
Children aged less than 4 years were not included as the optimum use of CFCS is for those aged 4 years and older. We included parents who had at least graduated from secondary school to compose a homogenous sample for the study. We choose this education level of the
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parents as well as families living in the big cities with moderate income levels. The exclusion criteria were not volunteering to participate in the study and not having a definite diagnosis of CP.
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Ethical approval was obtained from the Hacettepe University Noninterventional Clinical Research Ethics Committee (GO 15/436). Informed consent was obtained from the
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families and informed assent from the children older than 7 years of age after they were informed about the study.
1.2. Study Design/Study Setting A prospective cross-sectional study was planned to collect data. The three classification systems above are the main outcome measures of our follow-ups and have been utilized routinely in our clinical unit3-5.
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ACCEPTED MANUSCRIPT Data were collected from the clinicians and the parents. The first author, a physiotherapist with 17 years of experience in pediatric rehabilitation, classified the children with GMFCS-E&R, MACS and CFCS. The parents were informed about the study by the second author and instruction leaflets were given to the parents. We invited only one parent
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(mother or father) with the highest education status to the study and parents were given adequate time for the classification. We asked parents to classify their children’s communication functions by selecting the “most representative” level of the children. Parents
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were also informed to select “the lower” level to classify their child if they thought that the communication functions of their children were represented by two consecutive levels.
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1.3. Classification System Instruments
1.3.1. Communication Function Classification System (CFCS)
The Communication Function Classification System (CFCS) classifies everyday communication performance by providing 5 levels from Level I to Level V5,11. (Level I:
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Effective Sender and Receiver with unfamiliar and familiar partners, II: Effective but slower paced Sender and/or Receiver with unfamiliar and/or familiar partners, III: Effective Sender and Receiver with familiar partners, IV: Inconsistent Sender and/or Receiver with familiar
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partners, V: Seldom Effective Sender and Receiver even with familiar partners). Distinctions between the levels are based on the performance of the sender and receiver roles, the pace of
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communication, and the type of conversational partner. The difference between Levels I and II is the pace of the conversation. In Level I, the person communicates at a comfortable pace with little or no delay in order to understand, compose a message, or correct a misunderstanding. In Level II, the person needs extra time, at least occasionally. The differences between Levels II and III concern the pace and the type of conversational partners. In Level II, the person is an effective sender and receiver with all conversational partners, but pace is an issue. In Level III, the person is consistently effective with familiar conversational
5
ACCEPTED MANUSCRIPT partners, but not with most unfamiliar partners etc. Although originally developed for individuals with CP, the valid and reliable classification tool of CFCS is now being used to describe the communication performance of individuals with any kind of disability5-11. The Turkish CFCS has been previously forward translated and back translated from the original
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English version14. The pediatric physiotherapist who classified the children had training on CFCS online (http://cfcs.us/?page_id=16)11 and had also discussed some cases with the CFCS developers, MJH and the colleagues during the translation phases.
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1.3.2. Gross Motor Function Classification System-Expanded & Revised (GMFCS-E&R) GMFCS-E&R, like CFCS and MACS, is an evidence-based classification tool
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including five levels from Level I to Level V. GMFCS-E&R is the expanded and revised version of GMFCS. An age band of 12 to 18 years was added to the GMFCS in classifying the gross motor performance2,3. The children were classified using the Turkish version of the GMFCS-E&R15,16.
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1.3.3. Manual Ability Classification System (MACS)
The MACS provides a systematic classification of children with a focus on using the both hands in daily living activities such as play and eating and can be used for children aged
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4-18 years. Usual performances are preferred rather than best abilities for the classification4. The children were classified by using the Turkish version of the MACS17. Cultural validation
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of the Turkish MACS has been conducted by Akpinar P et al18. 1.4. Statistical analysis
IBM SPSS Version 21.0 for Windows (SPSS Inc., Chicago, IL, USA) was used to
analysis of the data. Continuous variables were represented with mean ± standard deviation or median [min–max] as appropriate. Categorical variables were summarized as frequencies and percentages. Weighted Kappa coefficient (with 95% confidence intervals [CI]) was calculated to determine the agreement between the CFCS evaluation of parents and physiotherapists.
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ACCEPTED MANUSCRIPT The Kappa coefficient proposed by Cohen is a chance corrected measure of interobserver agreement. When the results of methods are measured on an ordinal scale it may preferable to give different weights to the disagreements depending on the magnitude. This modification to Cohen’s Kappa is called weighted Cohen’s Kappa19. The weighted Kappa is calculated using
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a predefined table of weights that measure the degree of disagreement between the two raters and the higher the disagreement the higher the weight. Interpretation of the weighted Kappa coefficient is similar to the Kappa coefficient. Agreement according to Kappa statistics were
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identified as follows: <0.20, poor; 0.21 to 0.40, slight agreement; 0.41 to 0.60, fair; 0.61 to 0.80, good; 0.81 to 0.91, very good; and >0.92, excellent agreement19. Correlations between
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GMFCS-E&R, MACS and CFCS measurements were determined by the Spearman correlation coefficient. The Spearman correlation was identified as follows: ≥0.80, very strong; 0.80 to 0.60, strong; 0.60 to 0.40, moderate; 0.40 to 0.20, weak; <0.20, very weak20. Differences between CFCS classification of the clinical type and extremity distribution
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groups was evaluated by the Mann-Whitney U and Kruskal-Wallis tests. The significance level was determined as p<0.05. The power of the study was 85.5% and agreement between
2. Results
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the families and physiotherapists good with a difference of 0.15 at the most.
A total of 102 participants consisting of children with CP and one of their parents were
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included in the study. The mean age of the children was 9.3 ± 3.7 years with a range of 4-18 years (55 males and 47 females). Ninety-three (91.2%) children had spastic CP and 9 (8.8%) children had dyskinetic CP. When considering limb distribution, 41.9% of the children had hemiplegia, 30.1% had diplegia, and 28.0% had quadriplegia. The characteristics of children with CP as well as the demographic characteristics of the parents are reported in Table 1. There were seventy-four (72.5%) mothers and 28 (27.5%)
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ACCEPTED MANUSCRIPT fathers. The mean age was 36.0 ± 7.0 years for the mothers and 39.6 ± 6.9 years for the fathers. Table 2 represents the CFCS scores provided by physiotherapists and parents. Absolute disagreements have been highlighted for clarity. Thirteen (12.74 %) of the 102
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children were classified differently by parents compared with the clinicians and parents were more likely (11/13, 84.6%) to classify the child’s communication as higher functioning than the physiotherapist. Eleven (10.7%) of the children were classified just one level different
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between parents and clinicians. The weighted Kappa coefficient between physiotherapists and parents was 0.95 (95% confidence interval ([CI]) 0.95 to 0.96) for CFCS and indicated 87.3%
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overall agreement.
In addition, the correlation of CFCS between GMFCS and MACS was examined in the study and presented in Table 3 and 4. The Spearman correlation coefficient between CFCS and GMFCS was 0.77 (95% CI 0.68 – 0.84, p<0,001). The correlation between CFCS
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and MACS was found to be 0.73 (95% CI 0.63 – 0.81, p<0,001).
CFCS of the children according to clinical type and extremity distribution of CP is presented with details in Figure 1. The extremity distribution of the children affected the
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3. Discussion
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CFCS level (p<0,001), and CFCS levels were higher in the quadriplegic group (Table 5).
Classification systems have generally been used by clinicians and parents to classify
various functions of children with CP. Recent studies have focused on psychometric properties of reliability and validity of different language versions of the CFCS, including parental classifications within them7,9,12,13,21. This is the first study to investigate the agreement between parents and clinicians using the Turkish language version of CFCS, and it aims to determine the relationships between the three classification systems in the spastic and dyskinetic types of CP.
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ACCEPTED MANUSCRIPT In contrast to previous studies, our results showed excellent agreement between clinicians and parents for CFCS. Zwart et al. found that the inter-rater reliability of the Dutch version of CFCS had fair agreement between parents and speech-language therapists with 31.1% of the parents classifying their children as more functional compared to the
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therapists12. Virella et al. also determined fair agreement in CFCS between parents and health professionals22. In the study by Hidecker et al., the inter-rater reliability between parents and health professionals was found to be moderate, with parents tending to classify their
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children’s communication more functional than the health professionals5. On the other hand, in a study by Soleymani et al., the inter-rater reliability was good (0.74) between parents and
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occupational therapists and very good (0.88) between parents and speech language pathologists (SLP)13. The study by Choi et al., in 2017 the Korean version of the CFCS was in accordance with the Farsi version of the CFCS23. In this study, Korean version of the CFCS was good between parents and the physiatrist (ƙ = 0.61, 95% CI [0.46, 0.77]) and between the
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SLP and parents (ƙ = 0.63, 95% CI [0.47, 0.78])23. In our study, only thirteen (12.74 %) of the 102 children were classified differently by parents when compared with the clinician and the child's communication was classified as higher functioning by the parents compared with the
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clinician’s classification in 11 of these 13 (84.6%) patients, similar to a previous study by Hidecker et al.5. This higher functional classification of parents can be due to the parents
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underestimating the disability level of their child in general. In addition, parents see their children’s daily life performances for much longer periods than a clinicians who observes the child for only a limited time in a clinical setting or school so the families spend a long time (24 hours a day) with their children and may therefore be selecting the appropriate classification. When parents make a decision about their child's functional levels, they are doing it across a broader spectrum of environments than the clinicians. But parents may sometimes also have a different perception of “more functional”. Some families tend to
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ACCEPTED MANUSCRIPT perceive their children as functioning at a higher level than they actually are due to a protective approach. To prevent any confusion related to these factors, we wanted parents to select the “lowest level” if they vacillated between two choices. A possible reason for the excellent agreement observed could be the high education
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level of the parents included in this study. We included parents of similar educational level to obtain a homogenous study group and prevent possible bias as much possible while classifying the communication function of the children. We observed that parents felt in
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collaboration and compatible with physiotherapists during the study procedure.
CFCS classification agreement between the parents and the physiotherapist was
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excellent in level I, very good in levels II and III, fair in level IV, and good in level V. The lower agreement in level IV could be due to the difficulty in differentiating levels III and IV as also clearly mentioned in the Zwart et al. study12. Level I represents the mildest and Level V the most affected level in CFCS. Parents may therefore find it easier to distinguish lower
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levels. Some parents stated experiencing difficulty and indecision related to differentiating the levels, especially levels III and IV, during the classification. Our study included all three-classification systems: CFCS, GMFCS–E&R and MACS.
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We included children older than 4 years of age as the MACS cannot be used under this age. A family reliably classifying CFCS, GMFCS–E&R and MACS provides data collection for the
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documentation of their children and this is usually a less expensive and quicker method than an assessment by a clinician in a clinical setting to classify the functions for children with CP5,7-9. We found a correlation between the three classification systems as was the case in the Compagnone et al study24. In the study conducted by Hidecker et al., there were strong or moderate correlations between these three classification systems25. A study in 2017 by Piscitelli et al. to assess the situation in a developing country included 49 CP individuals and as a result there was a strong correlation between GMFCS and MACS26. Our findings
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ACCEPTED MANUSCRIPT therefore support the effectiveness of using three functional classifications to better determine the functional profile of children with CP in a quick and inexpensive manner. In a previous study of 68 children with CP, including spastic and dyskinetic children, the results indicated that children with dyskinetic CP had the least effective communication
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while communication levels of children showed significant differences between the CP types27. In addition, Coleman et al. found that children with spasticity were more likely to have poorer functional communication on univariate analysis28. Another study by Monbaliu et
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al. with children with dyskinetic CP also found a fair relationship (rs = 0.49) between GMFCS and CFCS29. Both outcomes are related to the location of the brain lesion with children with
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deep grey matter injury having poorer communication30. In our study, nine of the children were of the dyskinetic type but an appropriate statistical analysis could not be performed to compare the levels of spastic and dyskinetic types due to the low number of participants; however, the dyskinetic children were classified in levels IV and V, i.e., the most severe
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levels. A review is reported that impairment of speech is more common in dyskinetic CP and tetraplegic more than diplegic31. The results of Coleman et al. confirmed our findings and indicated that children with more severe gross motor impairment showed poorer and less
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effective communication, while children with mild motor impairment had better and more effective communication32. However, current findings show that individuals with CP who
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have severe influence on performing motor activities have good communication skills33. In our study, although small portion of the CP with GMFCS – E&R level IV and V were found to have a better level of CFCS and MACS, in general children with severe motor influence were found to be more affected by communication skills. For this reason it is thought that the number of children with CP is low and most of the individuals involved in the study are GMFCS I - II.
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ACCEPTED MANUSCRIPT In Bertule et al.'s 2014 study, children’s functional profiles were classified by both parents and professionals34. This approach can be seen as both a strength and a limitation of the study. In some studies, health professionals decide on the level of the child by their own observation and also asking the opinions of the parents34,35. In our opinion, this makes the
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agreement between health professionals and parents more important and relevant. In the same study, the CFCS level of the children was found to be a strong determinant of unmet needs of families who have children with CP in the preschool period34.
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Our study also had some limitations. Although our results indicated excellent agreement, the study design would have been much stronger if multiple clinicians from a
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variety of different fields and parents with a broader range of educational backgrounds were involved. In addition, it would have been better to compare the classifications of fathers and mothers but only one parent was invited. Comparison of our results with various aspects of the literature support the notion that family results can be accurate after the socioeconomic
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level is homogenized but we feel larger samples are needed to confirm the matter. Asking parents about their children has potential advantages, such as providing opportunities to develop a bridge for a common language between professionals and parents
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and also indicating their “degree of awareness” of their child's functional level as well. Parents also stated that they felt they were collaborating better with the healthcare
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professionals during the study. A similar feeling was also experienced in our previous GMFCS and MACS study with the parents8. These results suggest that using the Turkish CFCS in clinical practice can be done easily and quickly, and the parents can contribute to classifying the communication function of their children. 4. Conclusion The communication skills of the children were classified as higher functioning by the parents compared with the clinician’s classification. The excellent agreement between parents and
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ACCEPTED MANUSCRIPT clinicians for the Turkish language version of CFCS for children with CP indicated that parents and clinicians could talk in the same language when classifying the communication function of children with CP. Further research is required to understand the reasons for any difference between parents and clinicians in classifying functional levels using GMFCS–
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EP
TE D
M AN U
SC
RI PT
E&R, MACS, and/or CFCS.
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ACCEPTED MANUSCRIPT References 1-World Health Organization. International Classification of Functioning, Disability, and Health-Children and Youth, Geneva: WHO Press; 2007. 2- Palisano R, Rosenbaum P, Walter S. Development and reliability of a system to classify
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gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39:214–23. 3- Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Content validity of the expanded and
revised
Gross
Motor
Function
Classification
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Med
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Neurol. 2008;50:744-50.
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4- Eliasson AC, Krumlinde-Sundholm L, Rosblad B. The Manual Ability Classification
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System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol. 2006;48:549–54.
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Child Neurol. 2011; 53:704-10.
6- Hidecker MJ, Ho NT, Dodge N, et al. Inter-relationships of functional status in cerebral palsy: analyzing gross motor function, manual ability, and communication function
EP
classification systems in children. Dev Med Child Neurol. 2012;54:737-42. 7-Morris C, Galuppi BE, Rosenbaum PL. Reliability of family report for the Gross Motor
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Function Classification System. Dev Med Child Neurol. 2004;46:455–60. 8- Mutlu A, Kara OK, Gunel MK, et al. Agreement between parents and clinicians for the motor functional classification systems of children with cerebral palsy. Disabil Rehabil. 2011;11:927-32. 9- Imms C, Carlin J, Eliasson AC. Stability of caregiver-reported manual ability and gross motor function classifications of cerebral palsy. Dev Med Child Neurol. 2010;52:153–9.
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ACCEPTED MANUSCRIPT 10- Harvey A. Stability of parent-reported manual ability and gross motor function classification of cerebral palsy. Dev Med Child Neurol. 2010;52;113-8. 11- Communication Function Classification System [homepage on the internet].Available from: http://cfcs.us/. Last accessed February, 2017.
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12- Vander Zwart KE, Geytenbeek JJ, de Kleijn M, et al. Reliability of the Dutch-language version of the Communication Function Classification System and its association with language comprehension and method of communication. Dev Med Child Neurol.
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2016;58:180-8.
13- Soleymani Z, Joveini G, Baghestani AR. The Communication Function Classification
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System: cultural adaptation, validity, and reliability of the Farsi version for patients with cerebral palsy. Pediatr Neurol. 2015;52:333-7.
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15-GMFCS: Gross Motor Functional Classification System [homepage on the internet]. Availablefrom:https://canchild.ca/system/tenon/assets/attachments/000/000/083/original/GM FCS-ER_Translation-Turksih.pdf. Last accessed February, 2017.
expanded
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EP
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ACCEPTED MANUSCRIPT 19- Fleiss JL, Levin B, Paik MC. The Measurement of Interrater Agreement. In: Shewart MC, Wilks SS (eds). Statistical methods for rates and proportions. 3rd ed. New Jersey: John Wiley and Sons; 2003;608-610. 20- Altman D. Practical Statistics for Medical Research. 2nd edn. Chapman and Hall: London,
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Neurol. 2016;58:285-91.
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use in epidemiological surveillance of children with cerebral palsy. Dev Med Child
23- Choi JY, Hwang EH, Rha D, et al. Reliability and validity of the Koreanlanguage version of the Communication Function Classification System in children with cerebral palsy. Child Care Health Dev. 2017;20.
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24-Compagnone E, Maniglio J, Camposeo S, et al. Functional classifications for cerebral palsy: correlations between the gross motor function classification system (GMFCS), the manual
ability classification system
(MACS)
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function classification system (CFCS). Res Dev Disabil. 2014;35:2651-7. 25- Hidecker MJ, Ho NT, Dodge N, et al. Inter-relationships of functional status in cerebral
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palsy: analyzing gross motor function, manual ability, and communication function classification systems in children. Dev Med Child Neurol. 2012 Aug;54(8):737-42. 26- Piscitelli D, Vercelli S, Meroni R et al. Reliability of the gross motor function classification system and the manual ability classification system in children with cerebral palsy in Tanzania. Dev Neurorehabil. 2017 Jul;10:1-7. 27- Himmelmann K, Lindh K, Hidecker MJ. Communication ability in cerebral palsy: a study from the CP register of western Sweden. Eur J Paediatr Neurol. 2013;17:568-74.
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ACCEPTED MANUSCRIPT 28- Coleman A, Weir K, Ware RS, Boyd R. Predicting functional communication ability in children with cerebral palsy at school entry. Dev Med Child Neurol. 2015;57:279-85. 29- Monbaliu E, De La Peña MG, Ortibus E, et al. Functional outcomes in children and young people with dyskinetic cerebral palsy. Dev Med Child Neurol. 2017;59(6):634-640.
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2014;50:323-8.
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the impact of child's gross motor and communications functions. Medicina (Kaunas).
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ACCEPTED MANUSCRIPT %
Male
55
53,9
Female
47
46,1
Spastic
93
91,2
Dyskinetic
9
8,8
Extremity
Hemiplegic
39
41,9
distribution
Diplegic
28
30,1
(n=93)
Quadriplegic
26
28,0
GMFCS
Level I
42
41,2
Level II
18
Level III
9
Level IV
13
Level V
20
19,6
Level I
44
43,1
Level II
22
21,6
Level III
6
5,9
Level IV
13
12,7
MACS
Level V
74
72,5
28
27,5
30
29,4
High School
39
38,2
University
33
32,4
Education
Fathers
Secondary School
18
17,6
High School
39
38,2
University
45
44,1
EP
Secondary
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Mothers
Education
12,7
16,7
Respondent
Father
8,8
17
Parents of children with CP
Mother
17,6
M AN U
Clinical type
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Gender
SC
n
RI PT
Table 1 – Demographic characteristics of children with Cerebral Palsy and their parents
School
GMFCS: Gross Motor Function Classification System, MACS: Manual Ability Classification System CFCS: Communication Function Classification System
ACCEPTED MANUSCRIPT Table 2 – Agreement between physiotherapist and parents on Communication Function Classification System CFCS-Parents III
IV
V
Total
I
51b
1a
0
0
0
52
II
3a
14b
0
0
0
17
III
0
1a
6b
0
IV
0
1
3a
6b
V
0
0
1
2a
54
17
10
8
RI PT
Total
II
Weighted Kappa coefficient: 0.957 (%95 CI 0.952 – 0.964, p<0,001), overall agreement: %87,3 = represent one level difference between PT and parents
b
= represent agreement between PT and parents
higlighted= represent the disagreements in all levels
AC C
EP
TE D
CFCS: Communication Function Classification System.
M AN U
a
0
7
1a
11
12b
15
13
102
SC
CFCS-PT
I
ACCEPTED MANUSCRIPT Table 3 – Correlation between Communication Function Classification System and Gross Motor Function Classification System
GMFCS-PT IV
I
35
12
4
0
II
6
5
3
3
III
0
1
1
5
IV
1
0
1
4
V
0
0
0
1
42
18
9
13
V 1
52
0
17
0
7
5
11
14
15
20
102
Spearman correlation coefficient: 0.778 (%95 CI 0.688 – 0.845, p<0,001)
EP
TE D
GMFCS: Gross Motor Function Classification System, CFCS: Communication Function Classification System.
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Total
RI PT
III
SC
Total
II
M AN U
CFCS-PT
I
ACCEPTED MANUSCRIPT Table 4 – Correlation between Communication Function Classification System and Manual Ability Classification System
MACS-PT IV
I
34
14
4
0
II
8
6
0
3
III
1
1
1
4
IV
1
1
1
4
V
0
0
0
2
44
22
6
13
V 0
52
0
17
0
7
4
11
13
15
17
102
Spearman correlation coefficient : 0.735 (%95 CI 0.631 – 0.813, p<0,001)
EP
TE D
CFCS: Communication Function Classification System, MACS: Manual Ability Classification System
AC C
Total
RI PT
III
SC
Total
II
M AN U
CFCS-PT
I
ACCEPTED MANUSCRIPT
Table 5 –Effect of the clinical type and extremity distribution of CP on Communication Function Classification Sytem Z
p
Spastic
1 [1 – 5]
-3.063
0.002a
Dyskinetic
4 [2 – 5]
Extremity
Hemiplegic
1 [1 – 3]
-6.572
distribution
Diplegic
1 [1 – 4]
-5.384
Quadriplegic
4,5 [1 – 5]
p value for Mann Whitney U test
b
p value for Kruskal Wallis test, significant difference in quadriplegic
AC C
EP
TE D
CFCS: Communication Function Classification System.
M AN U
a
SC
Clinical type
RI PT
Median [Min – Max]
<0.001b
AC C
EP
TE D
M AN U
SC
RI PT
ACCEPTED MANUSCRIPT