Communication Function Classification System Research Articles

Reliability and Cross-Cultural Validation of the Turkish Version of the Visual Function Classification System (VFCS) for Children with Cerebral Palsy

ABSTRACT Purpose This correlational study aimed to determine the reliability and validity of the Turkish version of the Visual Function Classification System (VFCS) for children with CP. Method Two physiotherapists and caregivers (n = 56) applied the VFCS (n = 120) two times at a 15-day interval. Physiotherapists’ classifications were compared for interrater reliability. Same physiotherapists and caregivers’ classifications’ were compared for intrarater reliability. Expanded & Revised Gross Motor Function Classification System (GMFCS E&R), Manual Ability Classification System (MACS), and Communication Function Classification System (CFCS) were used for assessing validity of the culturally adapted VFCS. Results The interrater reliability between physiotherapists was excellent (ICC = 0.974, ICC = 0.988), while interrater reliability between the first physiotherapist and caregivers was good (ICC = 0.866, ICC = 0.893). The intrarater reliability was excellent (ICC = 0.971, ICC = 0.996, ICC = 0.984). A correlation was detected between the VFCS and the GMFCS E&R, MACS, and CFCS levels (r = 0.415, p < .001, r = 0.450, p < .001, r = 0.491, p < .001). Conclusion The findings of this study demonstrate the utility, compatibility and reliability of the Turkish version of the VFCS. Trial registration number NCT05102955

Functional classification systems in Brazilian children with cerebral palsy: Reliability and associations between functional levels

ABSTRACT Children with Cerebral palsy (CP) present movement and posture disorders. The Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), Communication Function Classification System (CFCS), Eating and Drinking Ability Classification System (EDACS), and Visual Function Classification System (VFCS) enhance the understanding of their performance. We verified inter-rater reliability and associations between the classification levels. Physical therapists classified 100 Brazilian children with CP (3–17 years) according to GMFCS, MACS, CFCS, EDACS, and VFCS. To evaluate inter-rater reliability (Intraclass Correlation Coefficient-ICC) two independent examiners concurrently assessed a subset of 60 participants. According to Spearman’s correlation coefficients, there were associations between GMFCS/MACS (r = 0.81), GMFCS/CFCS (r = 0.70), MACS/CFCS (r = 0.73), GMFCS/VFCS (r = 0.61), MACS/VFCS (r = 0.61), CFCS/EDACS (r = 0.58), CFCS/VFCS (r = 0.50), and EDACS/VFCS (r = 0.45) (p < .05). The inter-rater reliability ranged from excellent (ICC = 0.93-0.99) to good (ICC = 0.89), p < .05. The classification systems are reliable, and the levels associated with each other in Brazilian children, especially the GMFCS, MACS, and CFCS.

The relationship among the functional levels, dyskinetic movements and participation in children with dyskinetic cerebral palsy

Background &amp; Objective: This study aimed to investigate the relationship between the Gross Motor Function Classification System (GMFCS), the Manual Ability Classification System (MACS), the Eating and Drinking Ability Classification System (EDACS), the Communication Function Classification System (CFCS), dyskinetic movements and participation levels in children with dyskinetic cerebral palsy (DCP) to attain a comprehensive functional profile of DCP. Methods: Forty children with DCP aged between 5-18 years were included. Functional classification systems: GMFCS, MACS, CFCS, EDACS levels investigated. The Dyskinesia Impairment Scale (DIS) was used for evaluate dyskinetic movements: dystonia and choreoathetosis. Assessment of Life-Habits-Questionnaire (LIFE-H) was used for evaluate participation. Spearman’s correlation test was used to evaluate the relationship among functional classification levels, DIS subscales and LIFE-H subdomains. Multivariate simple linear regression, backward model was used to explain relations between LIFE-H subdomains, DIS subscales, GMFCS, MACS, EDACS and CFCS. Results: The mean age was 12.88±4.57 years. Correlations were found between GMFCS-MACS, GMFCS-EDACS, MACS-EDACS, CFCS-MACS, GMFCS-CFCS and EDACS-CFCS (p&lt;0.05); between GMFCS and dystonia upper extremity, dystonia lower extremity total score, dystonia total score (p&lt;0.05); between MACS and dystonia upper extremity, dystonia lower extremity total score, dystonia total score, and dystonia mouth total score (p&lt;0.05). LIFE-H Social-Roles Total Score, Daily-Living-Activities Total Score, LIFE-H-Total-Score were correlated with GMFCS, MACS, EDACS and CFCS (p&lt;0.05). The results of regression analysis showed GMFCS and MACS levels are strong predictors of participations (p&lt;0.05). Conclusions: To plan participatory intervention programs, it is important to understand the levels of participation and differences among children with DCP subtypes according to the ICF framework.

Speech and communication classification of children with cerebral palsy: Novice rater agreement and clinical utility

Purpose To examine novice inter-rater agreement and clinical utility perspectives for speech and communication classification of children with cerebral palsy (CP). Method Twenty-one clinicians (speech-language pathologists [SLPs] n = 11; physiotherapists [PTs] n = 5; occupational therapists [OTs] n = 5) novice to the Viking Speech Scale (VSS), Functional Communication Classification System (FCCS), and Communication Function Classification System (CFCS) rated eight unfamiliar children with CP (8–16 years) following classification orientation. Inter-rater agreement was examined between (a) novices, (b) novice SLPs vs. PTs and OTs, and (c) novice vs. expert (kappa statistics). Utility perceptions were scored regarding classification terminology, ease of use, assistive decision-making resources, and construct validity and were analysed using Kruskal–Wallis H-tests. Result Rating agreement between novices was substantial (VSS, k = 0.72, 95% CI [0.53–0.92]) to moderate (FCCS, k = 0.44, 95% CI [0.23–0.65]; CFCS, k = 0.45, 95% CI [0.18–0.71]), and almost perfect between novice and expert ratings (VSS, kw = 0.89, 95% CI [0.86–0.92]; FCCS, kw = 0.89, 95% CI [0.86–0.92]; CFCS, kw = 0.86, 95% CI [0.82–0.91]). Statistically significant differences, presented highest to lowest, were found for clinical utility: terminology (VSS, FCCS, CFCS; p = 0.02), assistive decision-making resources (FCCS, VSS, CFCS; p = 0.009), and construct validity (FCCS, CFCS, VSS; p < 0.001). Conclusion Novice raters achieved substantial agreement for speech classification, supporting utilisation in clinical, research, and CP register activities. Orientation to communication classification constructs, content, and instructions is recommended for novice raters.

Aspects of Physical Activity and Quality of Life in Adults with Cerebral Palsy

ABSTRACT Background: Physical activity and sedentary behavior may differentially impact health-related quality of life in adults with cerebral palsy. Objective: The present investigation assessed the independent relationships between aspects of physical activity and sedentary behavior related to health related quality of life in adults with cerebral palsy. Methods: Through a cross-sectional online survey of 118 adults with cerebral palsy, participants self-reported the extent of their functional impairments using the Gross Motor Function Classification System, Manual Ability Classification System, and Communication Function Classification System; while mental and physical health-related quality of life were assessed using the RAND-36. Physical activity and sedentary behavior were quantified using the Physical Activity and Disability Survey—Revised and Sedentary Behavior Questionnaire, respectively. Results: Accounting for potential confounding influences of impairments, neither exercise-related physical activity, leisure time- related physical activity, occupational physical activity, nor sedentary behavior was associated with any characterization of health-related quality of life. However, greater engagement in general lifestyle physical activity was related to superior mental health-related quality of life. Conclusion: These findings provide initial evidence to suggest that focusing public health and therapeutic recommendations for individuals with cerebral palsy on general physical activity engagement throughout the day might incur potential benefits for enhancing mental health- related quality of life in this population.

Efficacy and influencing factors of cervical perivascular sympathectomy in children with cerebral palsy

BackgroundThere is a lack of research to determine the efficacy of cervical perivascular sympathectomy (CPVS) in children with cerebral palsy (CP).ObjectiveThis study aimed to evaluate the efficacy of CPVS in children with CP and analyze the associated influential factors.MethodsUsing the method of retrospective cohort studies, children who underwent CPVS were included in the CPVS group, whereas those who underwent selective posterior rhizotomy (SPR) were included in the SPR group. The Communication Function Classification System (CFCS) and Teacher Drooling Scale (TDS) were used to evaluate the communication function and salivation in the two groups before and 12 months after surgery and compare the surgical efficiency between the two groups, and the factors affecting the efficacy were screened by binary logistic regression.ResultsThe study included 406 patients, 202 in the CPVS group and 204 in the SPR group. No significant differences were observed in the baseline characteristics (p > 0.05). The surgical efficacy of the CPVS group (47.01%) was significantly higher than that in the SPR group (9.81%) (χ2 = 71.08, p < 0.001). Binary logic regression analysis showed that preterm birth and Gross Motor Function Classification System (GMFCS) grade were influencing factors of surgical efficacy. Eighteen patients developed postoperative complications.ConclusionCPVS is a safe and effective surgery for cerebral palsy. Preterm birth and GMFCS grade are independent factors affecting the efficacy of surgery.

Preliminary Data: Powered Mobility Intervention With Language Monitoring for Children With Cerebral Palsy

Purpose: Adapted ride-on cars offer an affordable mobility intervention that provides broader access to a child's environment. Such newfound independence is a unique opportunity to examine changes in environmental language and communicative participation as children acquire mobility. New technologies such as the Language Environmental Analysis (LENA) system hold promise for evaluating naturalistic language interactions but have not yet been applied to children with cerebral palsy with physical and/or communication impairments. This study sought to use LENA with a sample of children with cerebral palsy to determine the feasibility of monitoring environmental language patterns during longitudinal mobility intervention. Method: LENA's adult word counts, conversational turns, and child vocalizations were compared across three time points for participants aged 16–49 months with a range of communication skills (indexed by Communication Function Classification System Levels I–IV). Results: Feasibility was established with acceptable criterion validity during active drive time. Results had large effect sizes, likely diluted by sample size and heterogeneity. Conclusions: Limitations include small sample size, nonprescriptive use of powered mobility devices, and lack of control group. Future studies should incorporate these features to more closely examine communication patterns.

Language Disorders Suffered by Cerebral Palsy Character in “Margarita, with a Straw” Movie

This research entitled “Language Disorders Suffered by Cerebral Palsy Character in Margarita, with a Straw Movie” was conducted to analyze language disorders in Cerebral Palsy. Seeing language and communication is crucial therefore this research is proposed to identify types of language disorders and their impacts on communication quality. The data of this were the utterances of a Cerebral Palsy character named Laila. This research used the language knowledge theory proposed by Carroll for examining language disorder types and the Communication Function Classification System by Hidecker et al for analyzing the effect of language disorders on communication quality. The data were analyzed by using the observation method and techniques of check, re-check, and cross-check where all data findings were observed, noted, and check properly then presented through words. From the analysis, Laila experienced; 66% phonological disorders where she stuttered and misarticulated words; 20% syntactic disorders where she forgot to use the auxiliary verb to be; 8% semantics disorders in which she uttered an idea that was not in accordance with the topic of discussion; and 6% pragmatics disorders whereas she gave irrelevantly and informatively answers. Her communication quality is level 4 where the phonological disorders greatly affect communication because people were difficult to understand her speech. Thus, the communication did not run effectively and efficiently. Keywords: Language Disorder, Cerebral Palsy, Communication

Developmental trajectories of spoken language comprehension and functional communication in children with cerebral palsy: A prospective cohort study.

To investigate spoken language comprehension (SLC), single-word comprehension (SWC), functional communication development, and their determinants, in children with cerebral palsy. This was a prospective cohort study in the Netherlands spanning 2 years 6 months. The main outcomes were SLC and SWC, assessed by the Computer-Based instrument for Low motor Language Testing (C-BiLLT) and the Peabody Picture Vocabulary Test-III-NL (PPVT-III-NL) respectively; and functional communication, measured by a subscale of the Focus on the Outcomes of Communication Under Six-34 (FOCUS-34). Linear mixed models were used to determine developmental trajectories, which were compared with norm and reference data. Potential determinants, for example intellectual functions, speech production, functional communication level (classified with the Communication Function Classification System, CFCS), and functional mobility, were added to assess their effects. Children with cerebral palsy (n = 188; mean age 59 months, range 17-110) were monitored for 2 years 6 months. Developmental trajectories for SLC (C-BiLLT) and SWC (PPVT-III-NL) were nonlinear; those for functional communication (FOCUS-34) were linear. Compared with norm and reference groups, significantly delayed SLC, SWC, and functional communication development were found. Determinants for SLC and SWC were intellectual functions and functional communication level (CFCS); and for functional communication development (FOCUS-34), speech production and arm-hand functioning. Children with cerebral palsy showed delayed SLC, SWC, and functional communication development compared with norm and reference groups. Remarkably, functional mobility was not associated with the development of SLC, SWC, or functional communication. Children with cerebral palsy have delayed spoken language comprehension (SLC), single-word comprehension (SWC), and functional communication development, compared to norm and reference data. Determinants for SLC and SWC development are intellectual functions and functional communication level. Determinants for functional communication development are speech production and arm-hand functioning. Functional mobility is not associated with SLC, SWC, or functional communication.

Provision of augmentative and alternative communication interventions to Norwegian preschool children with cerebral palsy: are the right children receiving interventions?

Preschool children with cerebral palsy (CP) with no or unintelligible speech need augmentative and alternative communication (AAC), but not all children needing AAC have access to it. This study describes the use and perceived benefit of AAC and explores factors associated with receiving AAC interventions. Using a cross-sectional design, we combined parent-reported data with data from the Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP). Communication, speech and hand function was classified according to the Communication Function Classification System (CFCS), Viking Speech Scale (VSS), and Manual Ability Classification System (MACS), accordingly. The need for AAC was defined as Levels III–V on the CFCS, without simultaneous classification at VSS Level I, and/or Levels III–IV on VSS. Parents reported on child- and family-directed AAC interventions using the Habilitation Services Questionnaire. Of the 95 children (42 females) with CP (M = 39.4 months, SD = 10.3), 14 had communication aids. Of the 35 children (31.4%) defined as needing AAC, 11 had been provided with communication aids. Parents of children with a communication aid reported satisfaction with and frequent use of the aid. Children at MACS Level III–V (OR = 3.4, p = .02) or with epilepsy (OR = 8.9, p < .01) were most likely to have received an AAC intervention. The low proportion of children receiving communication aids indicates an unmet need for AAC interventions among preschool children with CP.

Psychometric evaluation and distribution of classification systems in children with cerebral palsy in Japan.

The study sought to examine the content validity, the intra- and inter-rater reliability, and concurrent validity of the Japanese versions of the Manual Ability Classification System, the Communication Function Classification System, and the Eating and Drinking Ability Classification System, and representation of the distribution of the levels of each classification systems in comparison to the Gross Motor Function Classification System levels for children with cerebral palsy. The Japanese versions were developed using the back-translation method. For content validity, professionals were asked to complete a questionnaire including items on the appropriateness of the translation, its validity, and distinctions among levels. For reliability, professionals used the three classification systems twice in children with cerebral palsy. For concurrent validity, relationships among the four classification systems were examined by correlation analyses. Participants included twenty-one professionals and 290 children with cerebral palsy (mean age: 12 years two months, female: 132, male: 158). The content validity was generally good. For reliability, the lower limit of the 95% confidence interval for the intraclass correlation coefficients was greater than 0.89, and the correlation coefficients were high. The results of this study showed good reliability and validity of the functional classification systems in Japan.

Measurement properties of the Gross Motor Function Classification System, Gross Motor Function Classification System-Expanded & Revised, Manual Ability Classification System, and Communication Function Classification System in cerebral palsy: A systematic review with meta-analysis.

Linked Article: Piscitelli et al. https://onlinelibrary.wiley.com/doi/10.1111/dmcn.14910.

Exploration of the relationship between functional motor and communication performance levels and amount of use of the more affected upper extremity based on the caregivers’ perceptions in children with hemiplegic cerebral palsy: A cross-sectional study

ObjectiveTo investigate relationships between amount of use of the more affected upper extremity and functional motor and communication performance classification systems. Material and methodsThe study comprised 95 children with congenital hemiplegic cerebral palsy (CP) aged 6–15 years (52 males, 43 females; mean age 9.53, SD 3.1) and their parents/caregivers. The amount of use of the more affected upper extremity was assessed using Pediatric Motor Activity Log-Revised-How Often subscale (PMAL-R HO). Functional levels of the enrolled children were defined by the parents/caregivers using Manual Ability Classification System (MACS), Gross Motor Function Classification System-Expanded and Revised (GMFCS-E&R), and Communication Function Classification System (CFCS). ResultsA strong and negative correlation was found between PMAL-R HO subscale score and MACS (r=−0.819), suggesting that children with lower MACS levels are more likely to use their more affected upper extremity spontaneously. Additionally, negative and moderate associations between PMAL-R HO subscale score and GMFCS and CFCS were revealed (r1=−0.549 and r2=−0.567). ConclusionThe amount of use of the more affected upper extremity is more sensitive to MACS than GMFCS-E&R and CFCS. Children with a given MACS level had a wide range of PMAL-R HO subscale score. In addition to MACS, a score on the PMAL-R HO subscale related to the more affected upper extremity should be included as an inclusion criterion in clinical trials to avoid misleading effects of intervention approaches aimed at improving the amount of use of the more affected upper extremity in children with congenital hemiplegic CP.

Is Mobility Sufficient to Understand Community Participation of Adolescents and Young Adults With Cerebral Palsy? The Mediating and Moderating Roles of Contextual Factors

ObjectiveTo explore whether self-determination and family socioeconomic status (SES) mediate and/or moderate the relationship between mobility and community participation of adolescents and young adults with cerebral palsy (CP). DesignSurvey. SettingOnline platform. ParticipantsOf 55 eligible adolescents/young adults with CP, 50 agreed to participate and 2 were excluded. The final convenience sample included 48 individuals (N=48), aged 15-32 years, levels I-IV of the Gross Motor Function Classification System and I-II of the Communication Function Classification System. Main Outcome MeasuresThe Temple University Community Participation Measure documented the amount, breadth, and insufficiency/sufficiency ratios of participation across 26 community settings. The ARC Self-determination Scale and the Mobility Scale of the Pediatric Evaluation of Disability Inventory–Computer Adaptive Test (PEDI-CAT) measured individuals’ self-determination (ie, autonomy, psychological empowerment, self-realization) and mobility skills, respectively. The Brazilian Economic Classification Criteria–2021 assessed family SES. ResultsAnalyses of mediating/moderating effects revealed that the influence of individuals’ mobility skills on their breadth of community participation was mediated by autonomy. Family SES moderated the indirect effect of mobility on community participation breadth through autonomy. When the model was adjusted for participants’ age, individuals with higher SES reported greater breadth in community participation than those from moderate and lower SES for all mobility levels. However, the magnitude of the differences among individuals of different SES levels diminished as mobility increased. ConclusionsThe mobility skills of youths with CP influence their community participation through autonomy. To foster greater engagement of these individuals in the community, rehabilitation professionals should focus not only on improvement of mobility skills but also on the promotion of self-determined behaviors, especially autonomy.

Relationship Between Functional Classification Systems in Children With Cerebral Palsy

Objective: Cerebral palsy refers to a group of postural and movement disorders that limit movements and can be related to a non-progressive disorder in the developing brain. The international classification of disability emphasizes the child's functional abilities and routine performance. Some classification tools have been developed to describe and evaluate child's functions in daily activities such as walking, manipulating objects, and everyday communication. The present study aimed to investigate the relationship between classification systems (gross motor function, manual ability, communication function, and eating and drinking ability) in children with cerebral palsy. Materials &amp; Methods: This study was performed by cross-sectional correlation method and of descriptive analytical type. Children with cerebral palsy aged 12-144 months were recruited by convenience sampling from patients referred to clinics and public and private rehabilitation centers in Tehran and Arak cities, Iran, in 2019-2020. After completing the demographic information questionnaire by the child's primary caregiver, the gross motor function classification system (GMFCS), manual ability classification system (MACS), Communication function classification system (CFCS), and eating and drinking ability classification system (EDACS) were completed by a child therapist. Results: In the present study, 154 children with a Mean±SD age of 49.45±32.22 months participated. also, 87 children (56.5%) were boys, and 67(43.5%) were girls. According to GMFCS, the highest percentage distributions at levels II and IV were 31.2% and 26%, respectively. In other words, more than 57% of children were distributed in these two levels. According to MACS, the distributions of the highest percentages at levels II, III, and IV were 28.6%, 22.1%, and 20.8%, respectively. In other words, more than 70% of the children were distributed in these three levels. According to EDACS, the distribution of almost all levels was equal except the V level, with 4.3% having the lowest percentage. According to CFCS, the distribution of the highest percentage at levels V and IV was 23.5%. In examining the relationship between functional systems, significant relationships were observed in all cases: MACS and GMFCS, r=0.672; CFCS and GMFCS, r=0.581; EADCS and GMFCS, r=0.593; CFCS and MACS, r=0.555; EADCS and MACS, r=664; EADCS and CFCS, r=0. 547 (P&lt;0.01). Conclusion: It seems that children with more motor function limitations show more limitations in other performance classification systems, too. Of course, the number of studies in this field is limited and needs further investigation.

Factors Affecting the Independence Level of 4-6-Year-Old Children with Cerebral Palsy in Activities of Daily Living.

Enhancing the independence of children with cerebral palsy in their daily activities can significantly alleviate caregiver stress and challenges, thereby improving the quality of life for caregivers.. This study aimed to identify the influential factors in the independence level of children with CP in Activities of Daily Living (ADL) (self-care) and Instrumental Activities of Daily Living (IADL) (home participation). In this cross-sectional study, 116 children with different types of CP (61 boys and 55 girls) in the 4-6 age range and their parents were non-randomly selected through convenience sampling. The Iranian-Children Participation Questionnaire was used to measure the children's independence level in self-care activities and home participation. Several instruments, along with a demographic questionnaire, were used to assess personal factors, such as the Gross Motor Function Classification System, Manual Ability Classification System, Communication Function Classification System, SPARCLE (for determining children's cognitive level), and Eating and Drinking Ability Classification System. Eventually, the collected data were analyzed using stepwise linear regression.. The results showed that the level of Gross Motor Function Classification System (GMFCS) and Communication Function Classification System (CFCS) and the child's age had the most correlation with the independence level in self-care activities. Moreover, GMFCS, Manual Ability Classification System (MACS), cognitive level, and child's age were most associated with home participation. Personal factors are more effective than environmental factors in determining the independence of children with CP.

Chronic fatigue syndrome in caregivers of children with cerebral palsy and affecting factors.

In this study, the frequency of chronic fatigue syndrome (CFS), sleep disturbances, and quality of life levels in mothers of children with cerebral palsy (CP) was compared in relation to the functional status of the child. The caregivers were evaluated with the sociodemographic data form, Chalder fatigue scale (ChFS), Fatigue Severity Scale (FSS), Pittsburgh Sleep Quality Index, and Short Form-12, respectively. In addition, the functional status of the child with CP was evaluated with the gross motor function classification system, manual ability classification system (MACS), communication function classification system, and eating and drinking ability classification system. According to CDC-1994 criteria, 80.4% of the participating mothers have CFS (n=45). While the mean ChFS and FSS scores of housewives were found to be significantly higher than those of full-time workers (p=0.002; p=0.003, respectively), the mean SF-12 MCS was found to be significantly lower (p=0.007). The rate of housewives was found to be significantly higher in those diagnosed with CFS (p<0.001). The relationship between independent variables and dependent variables data sets as a result of canonical correlation analysis was obtained as 0.815. While the variable with the highest effect among the independent variables is the MACS variable, the variable with the highest percentage of explanation for the dependent variables is ChFS. The frequency of CFS is very high in mothers of children with CP, and the most important factors in the presence and severity of CFS are the mother's occupational status and the child's manual skills.

Newborns with myelomeningocele: their health-related quality of life and daily functioning 10 years later.

Ten years ago, the authors reported on the outcome of their study investigating the degree of discomfort and pain in newborns with myelomeningocele (MMC), using the parameters of unbearable and hopeless suffering. In the current study, they investigated the quality of life, daily functioning, pain and fatigue, ability to communicate, and number of surgeries in the same cohort of patients. They subdivided their study population into severe (Lorber) and less severe (non-Lorber) cases and compared these cases with a healthy population (non-MMC group) and with each other. The parents of 22 of 28 patients gave informed consent for this study. The KIDSCREEN-27 and PEDI-CAT (Pediatric Evaluation of Disability Inventory) were used to assess quality of life and daily functioning. Pain and fatigue were self-reported on a 10-point numeric rating scale. Communication and ambulation levels were determined using the Communication Function Classification System (CFCS) and the Hoffer ambulation scale. Using reference data from the KIDSCREEN-27 and PEDI-CAT, the authors created a healthy population comparison group. There was no significant difference in health-related quality-of-life (HRQOL) scores between Lorber and non-Lorber patients, except that school environment domain scores were lower in the Lorber group. When comparing the HRQOL of MMC patients with that of the non-MMC group, the physical well-being and parent relations and autonomy domains scored significantly lower. The daily functioning of MMC patients was lower on all domains of the PEDI-CAT compared with the non-MMC group. Lorber MMC patients scored lower on all domains of the PEDI-CAT when compared with non-Lorber patients. All patients were capable of communicating effectively; most patients (n = 18) were considered CFCS level I, and 4 patients were considered CFCS level II. This study shows that MMC is a severe, lifelong condition that affects patients' lives in many domains. All the patients in this study are capable of effective communication, irrespective of severity of MMC. Overall, the data show that in newborn MMC patients, future unbearable suffering with respect to pain, mobility, cognition, and communication is hard to predict and may not always occur.

The Relationship Between Clinical Motor and Communication Levels of Children with Cerebral Palsy, And Competencies From Parents' Perspectives

In this study, it was investigated whether there is a relationship between the clinical motor and communication levels of children with CP in terms of physiotherapy and the perceived competency levels from the parents' perspective. The Gross Motor Function Classification System (GMFCS) was used for motor ability level; the Communication Function Classification System (CFCS) was preferred for communication level. The children’ communication levels from the parent's perspective were evaluated with the Visual Analog Scale (VAS) and the Katz Index was used for measuring the children' activities of daily living. A total of 110 children with CP (mean age: 6.74±3.48 years) and their caregivers participated in the study. Communication levels were good for 30.6% of the children, and motor levels were good for 27.9% of them. The mean activity of daily living was 9.11±8.52. The child's proficiency level, according to the perspective of the parents, was found to be 6.22±3.29 on average. Positive correlations were found between the level of child communication skills as perceived by the parents, the CFCS level (r = 0.770; p&amp;lt;0.001), GMFCS (r = 0.652; p&amp;lt;0.001) and the Katz scale (r = 0.636; p&amp;lt;0.001). Adherence to treatment and continuity to rehabilitation regularly are important in the physiotherapy and rehabilitation process of children with CP. At the end of our study, it was determined that there was a good correlation between the communication competency. Within the scope of education programs, training parents to follow the development of their children and increase their awareness can increase their treatment adherence.

Reliability and validity of the Dutch-language version of the Viking Speech Scale in children with cerebral palsy.

The Viking Speech Scale is used to classify speech performance in children with cerebral palsy (CP). A Dutch-language version (VSS-NL) has recently become available. This study aimed to determine the reliability and validity of the VSS-NL and the association with motor type of CP, Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS) and Communication Function Classification System (CFCS). A total of 90 children with CP, recruited throughout the Netherlands, took part in the study. VSS-NL classifications by speech and language therapists unfamiliar (SLT1) and familiar (SLT2) with the child, parents and physicians were compared. Convergent and discriminant validity were determined with the Intelligibility in Context Scale-Dutch (ICS-NL) and the Computer Based Instrument for Low Motor Language Testing (C-BiLLT). Inter- and intrarater reliability were determined by weighted Kappa (ƙw ). Validity and associations between VSS-NL and GMFCS, MACS and CFCS were determined with Spearman's coefficient. Association between VSS-NL and motor type of CP was determined with Fisher's exact test. Interrater reliability was excellent between SLT1-SLT2 (ƙw =0.93, 95% confidence interval [CI] 0.87-0.99), good between SLT1-parent (ƙw = 0.71, 95% CI 0.60-0.83), SLT1-physician (ƙw = 0.70, 95% CI 0.58-0.81), SLT2-parent (ƙw = 0.71, 95% CI 0.57-0.84), SLT2-physician (ƙw = 0.73, 95% CI 0.62-0.85) and parent-physician (ƙ = 0.72, 95% CI 0.60-0.85). Intrarater reliability was excellent for SLTs familiar and unfamiliar to the child (ƙw = 1.00, 95% CI 1.00-1.00), and very good for physicians (ƙw = 0.89, 95% CI 0.75-1.00) and parents (ƙw = 0.72, 95% CI 0.62-1.00). Convergent validity was very strong (r = -0.81, p < 0.001) and discriminant validity moderate (r = -0.56, p < 0.001). Association with motor type of CP was significant (χ2 = 27.558, p < 0.001) and strong with GMFCS (r = 0.62, p < 0.001), MACS (r = 0.63, p < 0.01) and CFCS (r = 0.69, p < 0.001). The VSS-NL is a reliable and valid system to classify speech performance in children with cerebral palsy. Classifications can be performed by SLTs, parents and physicians.