Aly Waninge

Feasibility, test-retest reliability, and interrater reliability of the Modified Ashworth Scale and Modified Tardieu Scale in persons with profound intellectual and multiple disabilities

Caregivers of persons with profound intellectual and multiple disabilities (PIMD) often describe the quality of the daily movements of these persons in terms of flexibility or stiffness. Objective outcome measures for flexibility and stiffness are muscle tone or level of spasticity. Two instruments used to grade muscle tone and spasticity are the Modified Ashworth Scale (MAS) and the Modified Tardieu Scale (MTS). To date, however, no research has been performed to determine the psychometric properties of the MAS and MTS in persons with PIMD. Therefore, the purpose of this study was to determine the feasibility, test-retest reliability, and interrater reliability of the MAS and MTS in persons with PIMD. We assessed 35 participants on the MAS and MTS twice, first for the test and second a week later for the retest. Two observers performed the measurements. Feasibility was assessed based on the percentage of successful measurements. Test-retest and interrater reliability were determined by using the Wilcoxon signed rank test, intraclass correlation coefficients (ICC), Spearmans correlation, and either limits of agreement (LOA) or quadratically weighted kappa. The feasibility of the measurements was good, because an acceptable percentage of successful measurements were performed. MAS measurements had substantial to almost perfect quadratically weighted kappa (>0.8) and an acceptable ICC (>0.8) for both inter- and intrarater reliability. However, MTS measurements had insufficient ICCs, Spearmans correlations, and LOAs for both inter- and interrater reliability. Our data indicated that the feasibility of the MAS and MTS for measuring muscle tone in persons with PIMD was good. The MAS had sufficient test-retest and interrater reliability; however, the MTS had an insufficient test-retest and interrater reliability in persons with PIMD. Thus, the MAS may be a good method for evaluating the quality of daily movements in persons with PIMD. Providing test administrators with training and clear instructions will improve test reliability.

Measuring waist circumference in disabled adults

To date, it is unknown whether waist circumference can be measured validly and reliably when a subject is in a supine position. This issue is relevant when international standards for healthy participants are applied to persons with severe intellectual, sensory, and motor disabilities. Thus, the aims of our study were (1) to determine the validity of waist circumference measurements obtained in a supine position, (2) to formulate an equation that predicts standing waist circumference from measurements obtained in a supine position, and (3) to determine the reliability of measuring waist circumference in persons with severe intellectual, sensory, and motor disabilities. First, we performed a validity study in 160 healthy participants, in which we compared waist circumference obtained in standing and supine positions. We also conducted a test-retest study in 43 participants with severe intellectual, sensory, and motor disabilities, in which we measured the waist circumference with participants in the supine position. Validity was assessed with paired t-test and Wilcoxon signed rank test. A prediction equation was estimated with multiple regression analysis. Reliability was assessed by Wilcoxon signed rank test, limits of agreement (LOA), and intraclass correlation coefficients (ICC). Paired t-test and Wilcoxon signed rank test revealed significant differences between standing and supine waist circumference measurements. We formulated an equation to predict waist circumference (R(2)=0.964, p<0.001). There were no significant differences between test and retest waist circumference values in disabled participants (p=0.208; Wilcoxon signed rank test). The LOA was 6.36 cm, indicating a considerable natural variation at the individual level. ICC was .98 (p<0.001). We found that the validity of supine waist circumference is biased towards higher values (1.5 cm) of standing waist circumference. However, standing waist circumference can be predicted from supine measurements using a simple prediction equation. This equation allows the comparison of supine measurements of disabled persons with the international standards. Supine waist circumference can be reliably measured in participants with severe intellectual, sensory, and motor disabilities.

Feasibility and reliability of the modified Berg Balance Scale in persons with severe intellectual and visual disabilities

BACKGROUND The purpose of this study was to determine the feasibility and reliability of the modified Berg Balance Scale (mBBS) in persons with severe intellectual and visual disabilities (severe multiple disabilities, SMD) assigned Gross Motor Function Classification System (GMFCS) grades I and II. METHOD Thirty-nine participants with SMD and GMFCS grades I and II performed the mBBS twice with 1-week interval. Feasibility was assessed by the percentage of successful measurements per task and of the total score. First, test-retest reliability was determined by intraclass correlation coefficients (ICC) for each task and for the total score of all tasks combined. Second, level of agreement between test-retest scores was assessed with the proportion of equal scores for each task. Finally, internal consistency of the distinct tasks was assessed by Cronbachs alpha. RESULTS The results indicated that 92% of the measurements by the mBBS for all selected tasks were successful, indicating that the mBBS is a feasible instrument for the tested target group. ICC for the test-retest of the total score was 0.95. The proportion of equal scores for test-retest of the tasks was 0.80 or more, except for tasks 9 and 10. Cronbachs alpha of distinct tasks was 0.84. Test-retest reliability of tasks 9 and 10 was not acceptable. CONCLUSIONS Feasibility of all tasks and test-retest reliability of 10 out of 12 mBBS tasks is acceptable. The mBBS is a both feasible and reliable test for evaluating the functional balance of persons with SMD and GMFCS grades I and II.

Feasibility and reliability of body composition measurements in adults with severe intellectual and sensory disabilities

BACKGROUND Anthropometric measurements are widely used to reliably quantify body composition and to estimate risks of overweight in healthy subjects and in patients. However, information about the reliability of anthropometric measurements in subjects with severe intellectual and sensory disabilities is lacking. OBJECTIVE The purpose of this study was to determine the feasibility and the test-retest reliability of body composition measures in subjects with severe intellectual and sensory disabilities. METHOD The study population consisted of 45 subjects with severe intellectual and sensory disabilities. Body mass index, waist circumference, skin folds and tibia length were measured. Reliability was assessed by Wilcoxon signed rank test, limits of agreement (LOA) and intraclass correlation coefficients. The outcomes were compared with values provided by the World Health Organization. RESULTS There were no significant differences between test and retest (P < 0.05). For the skinfold measurements, however, the LOA was insufficient. Intraclass correlation coefficients for all variables, except skinfold measurements, were 0.90 or above. CONCLUSION Test-retest reliability and feasibility for all measurements are acceptable in subjects with severe intellectual and sensory disabilities. Skinfold measurements, however, could not be reliably performed in these subjects. Measuring tibia length and using the determined formula to calculate body height from tibia length is a reliable alternative for measuring body height. Although measuring the body height of subjects with severe disabilities was feasible, measuring tibia length was more feasible.

Heart rate and physical activity patterns in persons with profound intellectual and multiple disabilities

Abstract Waninge, A, van der Putten, AAJ, Stewart, RE, Steenbergen, B, Van Wijck, R, and van der Schans, CP. Heart rate and physical activity patterns in persons with profound intellectual and multiple disabilities. J Strength Cond Res 27(11): 3150–3158, 2013—Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity levels of persons with PIMD and to analyze these heart rate patterns according to participant characteristics, observed level of activity, days, and time of day. The heart rate patterns of 24 participants with PIMD were measured continuously using a heart rate monitor for 8 h·d−1 for a period of 6 days. Physical activity levels were measured with questionnaires. Data were analyzed using multilevel analysis. The results indicate that the participants use only 32% of their heart rate reserve over 6 days. The intensity of heart rate reserve ranged from 1 to 62%. On a given day, wide ranges in heart rates between participants and within persons were observed. Between days, only small ranges in the heart rate were found. The participants could be grouped into 4 classes according to their heart rate. In addition, factors such as time of day, physical activity, and age are significantly related to heart rate patterns. In conclusion, this study is an important first step in exploring activity patterns based on heart rate patterns in persons with PIMD. The participants used relatively small fractions of their heart rate reserves. Time of day and age appear to have a considerable influence on heart rate patterns. The observed classes in heart rate patterns suggest that other probably more personal and psychosocial factors have significant influences on heart rate patterns, as well.

Prevalence of reported physical health problems in people with severe or profound intellectual and motor disabilities: a cross-sectional study of medical records and care plans

BACKGROUND People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans. METHOD We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded. RESULTS The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux. CONCLUSIONS The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.

Reliability of the modified Paediatric Evaluation of Disability Inventory, Dutch version (PEDI-NL) for children with cerebral palsy and cerebral visual impairment

PURPOSE The aims of this study were to adapt the Paediatric Evaluation of Disability Inventory, Dutch version (PEDI-NL) for children with cerebral visual impairment (CVI) and cerebral palsy (CP) and determine test-retest and inter-respondent reliability. METHOD The Delphi method was used to gain consensus among twenty-one health experts familiar with CVI. Test-retest and inter-respondent reliability were assessed for parents and caregivers of 75 children (aged 50-144 months) with CP and CVI. The percentage identical scores of item scores were computed, as well as the interclass coefficients (ICC) and Cronbachs alphas of scale scores over the domains self-care, mobility, and social function. RESULTS All experts agreed on the adaptation of the PEDI-NL for children with CVI. On item score, for the Functional Skills scale, mean percentage identical scores variations for test-retest reliability were 73-79 with Caregiver Assistance scale 73-81, and for inter-respondent reliability 21-76 with Caregiver Assistance scale 40-43. For all scales over all domains ICCs exceeded 0.87. For the domains self-care, mobility, and social function, the Functional Skills scale and the Caregiver Assistance scale have Cronbachs alpha above 0.88. CONCLUSION The adapted PEDI-NL for children with CP and CVI is reliable and comparable to the original PEDI-NL.

Development and face validity of a cerebral visual impairment motor questionnaire for children with cerebral palsy

AIM The objectives of this study were (i) to develop two cerebral visual impairment motor questionnaires (CVI-MQs) for children with cerebral palsy (CP): one for children with Gross Motor Function Classification System (GMFCS) levels I, II and III and one for children with GMFCS levels IV and V; (ii) to describe their face validity and usability; and (iii) to determine their sensitivity and specificity. BACKGROUNDS The initial versions of the two CVI-MQs were developed based on literature. Subsequently, the Delphi method was used in two groups of experts, one familiar with CVI and one not familiar with CVI, in order to gain consensus about face validity and usability. The sensitivity and specificity of the CVI-MQs were subsequently assessed in 82 children with CP with (n = 39) and without CVI (n = 43). With the receiver operating curve the cut-off scores were determined to detect possible presence or absence of CVI in children with CP. RESULTS Both questionnaires showed very good face validity (percentage agreement above 96%) and good usability (percentage agreement 95%) for practical use. The CVI-MQ version for GMFCS levels I, II and III had a sensitivity of 1.00 and specificity of 0.96, with a cut-off score of 12 points or higher, and the version for GMFCS levels IV and V had a sensitivity of 0.97 and a specificity of 0.98, with a cut-off score of eight points or higher. CONCLUSION The CVI-MQ is able to identify at-risk children with CP for the probability of having CVI.

The impact of visual impairment on the ability to perform activities of daily living for persons with severe/profound intellectual disability

BACKGROUND The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and physical capacities. However, until recently, the impact of the significantly prevalent visual impairments on the performance of activities of daily living has not yet been revealed within this group. AIM The purpose of this prospective cross-sectional study was to investigate the impact of visual impairment on the performance of activities of daily living for persons with a severe/profound intellectual disability. METHOD The Barthel Index (BI) and Comfortable Walking Speed (CWS) were used to measure the ability of performing activities of daily living (ADL) in 240 persons with severe/profound ID and having Gross Motor Functioning Classification System (GMFCS) levels I, II or III; this included 120 persons with visual impairment. The impact of visual impairment on ADL was analyzed with linear regression. RESULTS The results of the study demonstrated that visual impairment slightly affects the ability of performing activities of daily living (BI) for persons experiencing a severe/profound intellectual disability. GMFCS Levels II or III, profound ID level, and visual impairment each have the effect of lowering BI scores. GMFCS Levels II or III, and profound ID level each have the effect of increasing CWS scores, which indicates a lower walking speed. A main effect of visual impairment is present on CWS, but our results do show a substantive interaction effect between GMFCS level III and visual impairment on Comfortable Walking Speed in persons with a severe/profound intellectual disability. CONCLUSIONS Visual impairment has a slight effect on ability to perform ADL in persons experiencing severe/profound ID.

Gross motor function in children with spastic Cerebral Palsy and Cerebral Visual Impairment: A comparison between outcomes of the original and the Cerebral Visual Impairment adapted Gross Motor Function Measure-88 (GMFM-88-CVI).

PURPOSE To investigate whether the adapted version of the Gross Motor Function Measure-88 (GMFM-88) for children with Cerebral Palsy (CP) and Cerebral Visual Impairment (CVI) results in higher scores. This is most likely to be a reflection of their gross motor function, however it may be the result of a better comprehension of the instruction of the adapted version. METHOD The scores of the original and adapted GMFM-88 were compared in the same group of children (n=21 boys and n=16 girls), mean (SD) age 113 (30) months with CP and CVI, within a time span of two weeks. A paediatric physical therapist familiar with the child assessed both tests in random order. The GMFCS level, mental development and age at testing were also collected. The Wilcoxon signed-rank test was used to compare two different measurements (the original and adapted GMFM-88) on a single sample, (the same child with CP and CVI; p<0.05). RESULTS The comparison between scores on the original and adapted GMFM-88 in all children with CP and CVI showed a positive difference in percentage score on at least one of the five dimensions and positive percentage scores for the two versions differed on all five dimensions for fourteen children. For six children a difference was seen in four dimensions and in 10 children difference was present in three dimensions (GMFM dimension A, B& C or C, D & E) (p<0.001). CONCLUSION The adapted GMFM-88 provides a better estimate of gross motor function per se in children with CP and CVI that is not adversely impacted bytheir visual problems. On the basis of these findings, we recommend using the adapted GMFM-88 to measure gross motor functioning in children with CP and CVI.