Reliability and Validity of the TIMPSI for Infants With Spinal Muscular Atrophy Type I
infant; children; Pediatrics; Rehabilitation; motor; female; male; assessments; childhood/physiopathology; humans; spinal muscular atrophies of; child development; childhood/diagnosis; functional motor scale; observer variation; performance; physical therapy; physical therapy specialty/standards; reproducibility of results; skills/physiology; specialty/instrumentation; video recording; tone and motor problems; SMA1; tool development; scale development; TIMP
Purpose: This study examined the reliability and validity of the Test of Infant Motor Performance Screening Items (TIMPSI) in infants with type I spinal muscular atrophy (SMA). Methods: After training, 12 evaluators scored 4 videos of infants with type I SMA to assess interrater reliability. Intrarater and test-retest reliability was further assessed for 9 evaluators during a SMA type I clinical trial, with 9 evaluators testing a total of 38 infants twice. Relatedness of the TIMPSI score to ability to reach and ventilatory support was also examined. Results: Excellent interrater video score reliability was noted (intraclass correlation coefficient, 0.97-0.98). Intrarater reliability was excellent (intraclass correlation coefficient, 0.91-0.98) and test-retest reliability ranged from r = 0.82 to r = 0.95. The TIMPSI score was related to the ability to reach (P <= .05). Conclusion: The TIMPSI can reliably be used to assess motor function in infants with type I SMA. In addition, the TIMPSI scores are related to the ability to reach, an important functional skill in children with type I SMA. (Pediatr Phys Ther 2013;25:140-148)
Krosschell K J; Mazulski J A; Scott C; King W; Hartman J T; Case L E; Viazzo-Trussell D; Wood J; Roman C A; Hecker E; Meffert M; Leveille M; Kienitz K; Swoboda K J; Project Cure Spinal Muscular Atrophy Investigators
Pediatric Physical Therapy
2013
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<a href="http://doi.org/10.1097/PEP.0b013e31828a205f" target="_blank" rel="noreferrer noopener">10.1097/PEP.0b013e31828a205f</a>
A modified Hammersmith functional motor scale for use in multi-center research on spinal muscular atrophy
Male; Severity of Illness Index; Videotape Recording; Humans; Child Preschool; Reproducibility of Results; Infant; Disability Evaluation; Observer Variation; Contracture/di [Diagnosis]; Contracture/pp [Physiopathology]; Spinal Muscular Atrophies of Childhood/di [Diagnosis]; Spinal Muscular Atrophies of Childhood/pp [Physiopathology]; tone and motor problems; SMA1; tool development; scale development; HFMS
The Hammersmith functional motor scale for children with spinal muscular atrophy was modified to establish a standard measure of functional ability in children with non-ambulant spinal muscular atrophy types 2 and 3 in a longitudinal multi-center clinical trial. This study assessed the intra- and interrater reliability and the test-retest stability of a modified version of the scale. Both intra- and interrater reliability were established. Results indicate that the scale is reliable and stable over a 6 month period. Reliability was maintained when patient sample criteria were expanded to include children younger than 30 months and children with popliteal angles greater than 20 degrees . These data establish the modified Hammersmith functional motor scale for children with spinal muscular atrophy as a reliable instrument for use in multi-center treatment trials in non-ambulant spinal muscular atrophy children. Our data provides additional support for the use of original scale items in terms of ease of administration, usefulness and reliability, while incorporating modifications to optimize its use in a multi-center clinical research setting.
Krosschell K J; Maczulski J A; Crawford T O; Scott C; Swoboda K J
Neuromuscular Disorders
2006
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<a href="http://doi.org/10.1016/j.nmd.2006.03.015" target="_blank" rel="noreferrer noopener">10.1016/j.nmd.2006.03.015</a>
Lack of utility of abdominal x-rays in the evaluation of children with constipation: comparison of different scoring methods
Child; Female; Humans; Male; Observer Variation; retrospective studies; Diagnosis; Differential; Radiography; ROC Curve; Abdominal/methods; Colon/physiopathology/radiography; Colonic Diseases; Constipation/physiopathology/radiography; Fecal Incontinence/physiopathology/radiography; Feces; Functional/physiopathology/radiography; Gastrointestinal Transit; X-Rays
BACKGROUND AND AIM: Abdominal x-rays are used diagnostically in the evaluation of children with constipation. However, their clinical utility has not been established. The aim of the study was to assess the accuracy of different methods in identifying children with functional constipation (FC) or nonretentive fecal incontinence (NRFI). PATIENTS AND METHODS: Retrospective review of abdominal x-rays in which colonic transit (CT), Barr, Leech, and fecal loading (FL) scores were blindly measured by blinded pediatric gastroenterologists and a radiologist. Children were classified a priori as FC or NRFI. RESULTS: One hundred sixty patients (125 FC, 35 NRFI) were studied. There were significant differences (P 50% of NRFI had abnormal scores. CT discriminated better between FC and NRFI. There was a significant correlation (P < 0.05) between CT and Barr (0.45), Leech (0.41) and FL scores (0.36), and between Barr and Leech scores (r = 0.94). There was good intraobserver correlation between Barr, Leech, and FL scores but poor interobserver reproducibility. CONCLUSIONS: Although significant differences in overall FC and NRFI scores exist, the discriminative value is low for all scores. There is poor interobserver reproducibility of the Barr, Leech, and FL scores. These findings confirm the limited value of the plain abdominal x-ray in the evaluation of children with constipation.
2010
Pensabene L; Buonomo C; Fishman L; Chitkara D; Nurko S
Journal Of Pediatric Gastroenterology And Nutrition
2010
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Journal Article
<a href="http://doi.org/10.1097/MPG.0b013e3181cb4309" target="_blank" rel="noreferrer">10.1097/MPG.0b013e3181cb4309</a>
A scale to monitor progression and treatment of mitochondrial disease in children.
Child; Female; Humans; infant; Male; Great Britain; Prognosis; Disease Progression; Longitudinal Studies; Reproducibility of Results; Observer Variation; Predictive Value of Tests; Disability Evaluation; adolescent; Preschool; infant; Q3 Literature Search; Newborn; Pediatrics/methods; Mitochondrial Diseases/diagnosis/therapy; Mitochondrial Encephalomyopathies/diagnosis/therapy; Neurology/methods
Mitochondrial diseases affect all age groups, but those with childhood onset often seem to experience the greatest burden of disability. In some paediatric patients this can be explained by a cumulative disability acquired over many years. In others, additional factors, including the nature and severity of the molecular defect, must be considered. To date, no large-scale studies have attempted to document the natural history of paediatric mitochondrial disease. This is in part at least, because no assessment tool has been available to plot the temporal course of a disease with such a diverse clinical spectrum. This paper describes how a practical and semi-quantitative rating scale has been devised for children with mitochondrial disease, the Newcastle paediatric mitochondrial disease scale (NPMDS). The scale is multi-dimensional and reproducible, offering a tool through which mitochondrial disease progression can be objectively monitored. We anticipate that use of this tool will facilitate both longitudinal natural history studies and the assessment of future therapeutic interventions.
2006
Phoenix C; Schaefer AM; Elson JL; Morava E; Bugiani M; Uziel G; Smeitink JA; Turnbull DM; McFarland R
Neuromuscular Disorders
2006
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Journal Article
<a href="http://doi.org/10.1016/j.nmd.2006.08.006" target="_blank" rel="noreferrer">10.1016/j.nmd.2006.08.006</a>
The Carter Neurocognitive Assessment for children with severely compromised expressive language and motor skills
Child; Female; Humans; Male; Severity of Illness Index; Observer Variation; Preschool; infant; Children W/SNI; Social Perception; Neuropsychological Tests; Brain/physiopathology; Attention; Cognition Disorders/diagnosis/epidemiology/physiopathology; Functional Laterality/physiology; Language Disorders/diagnosis/epidemiology; Motor Skills Disorders/diagnosis/epidemiology; Visual Perception
In this paper, different means of assessing cognitive development in children with severe impairments in both their expressive language and their motor skills are reviewed. A range of techniques are considered, including traditional cognitive tests and behavioral and physiological measures, but these techniques are generally impractical and minimally informative when it comes to assessing children with both motor and speech impairments. Electrophysiological measures show some promise for the future, but are currently inadequate for wide-ranging cognitive assessment. Development of the Carter Neurocognitive Assessment (CNA) is described. The CNA is appropriate for use in clinical and research settings and was designed to minimalize the impact of severely impaired motor skills and expressive language on performance. The CNA is intended to itemize and quantify a range of skills reflecting a cognitive level up to approximately 18 to 24 months in four areas: Social Awareness, Visual Attention, Auditory Comprehension and Vocal Communication. The use of the CNA to assess the performance and developmental growth of eight children with Holoprosencephaly (HPE), a midline developmental brain malformation, is described. The CNA is a useful tool for the assessment of children with severely compromised motor and verbal skills and has provided a more positive view of the cognitive potential of children with severe handicaps, such as the sample of children with HPE, than that presented in the past.
2005
Leevers HJ; Roesler CP; Flax J; Benasich AA
Journal Of Child Psychology And Psychiatry, And Allied Disciplines
2005
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Journal Article
<a href="http://doi.org/10.1111/j.1469-7610.2004.00354.x" target="_blank" rel="noreferrer">10.1111/j.1469-7610.2004.00354.x</a>
Validation of the Non-communicating Children's Pain Checklist-Postoperative Version
Child; Female; Humans; Male; Pain; Communication; Nurses; Facial Expression; Observer Variation; Predictive Value of Tests; Motor Activity; adolescent; Non-U.S. Gov't; Research Support; caregivers; Social Behavior; Behavior/physiology; Postoperative/diagnosis; Mental Retardation/psychology; Pain Measurement/methods/standards
BACKGROUND: This study evaluated the psychometric properties of the Non-communicating Children's Pain Checklist-Postoperative Version (NCCPC-PV) when used with children with severe intellectual disabilities. METHODS: The caregivers of 24 children with severe intellectual disabilities (aged 3-19 yr) took part. Each child was observed by one of their caregivers and one of the researchers for 10 min before and after surgery. They independently completed the NCCPC-PV and made a visual analog scale rating of the child's pain intensity for those times. A nurse also completed a visual analog scale for the same observations. RESULTS: The NCCPC-PV was internally reliable (Cronbach alpha = 0.91) and showed good interrater reliability. A repeated-measures analysis of variance indicated NCCPC-PV total and subscale scores were significantly higher after surgery and did not differ by observer. Postoperative NCCPC-PV scores correlated with visual analog scale ratings provided by caregivers and researchers, but not with those of nurses. A score of 11 on the NCCPC-PV, by caregivers, provided 0.88 sensitivity and 0.81 specificity for classifying children with moderate to severe pain. CONCLUSIONS: The NCCPC-PV displayed good psychometric properties when used for the postoperative pain of children with severe intellectual disabilities and has the potential to be useful in a clinical setting. The results suggest familiarity with an individual child with intellectual disabilities is not necessary for pain assessment.
2002
Breau LM; Finley GA; McGrath PJ; Camfield CS
Anesthesiology
2002
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Journal Article
<a href="http://doi.org/10.1097/00000542-200203000-00004" target="_blank" rel="noreferrer">10.1097/00000542-200203000-00004</a>
High agreement but low kappa: II. Resolving the paradoxes
Sensitivity and Specificity; Observer Variation; Q3 Literature Search; Statistics as Topic
An omnibus index offers a single summary expression for a fourfold table of binary concordance among two observers. Among the available other omnibus indexes, none offers a satisfactory solution for the paradoxes that occur with p0 and kappa. The problem can be avoided only by using ppos and pneg as two separate indexes of proportionate agreement in the observers' positive and negative decisions. These two indexes, which are analogous to sensitivity and specificity for concordance in a diagnostic marker test, create the paradoxes formed when the chance correction in kappa is calculated as a product of the increment in the two indexes and the increment in marginal totals. If only a single omnibus index is used to compared different performances in observer variability, the paradoxes of kappa are desirable since they appropriately "penalize" inequalities in ppos and pneg. For better understanding of results and for planning improvements in the observers' performance, however, the omnibus value of kappa should always be accompanied by separate individual values of ppos and pneg.
1990
Cicchetti DV; Feinstein AR
Journal Of Clinical Epidemiology
1990
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Journal Article
<a href="http://doi.org/10.1016/0895-4356(90)90159-m" target="_blank" rel="noreferrer">10.1016/0895-4356(90)90159-m</a>
Interrater agreement and stability of the Functional Independence Measure for Children (WeeFIM): Use in children with developmental disabilities.
Child; Humans; Disabled Persons; Longitudinal Studies; Activities of Daily Living; Observer Variation; Health Status Indicators; Disability Evaluation; Preschool; infant
OBJECTIVE: Examination of the interrater agreement and stability of ratings obtained using the Functional Independence Measure for Children (WeeFIM) in a sample of children with developmental disabilities. DESIGN: A relational design was used in which two sets of WeeFIM scores were collected under four conditions: same rater-short interval; same rater-long interval; different rater-short interval; and different rater-long interval. SETTING: WeeFIM scores were collected in outpatient developmental rehabilitation centers, school programs, and the children's homes. PARTICIPANTS: Data were collected for 205 children ranging in age from 11 to 87 months. All children had a medical diagnosis of disability and were receiving habilitative-educational intervention or follow-along services including neurodevelopmental surveillance. INSTRUMENT: The WeeFIM instrument examines basic daily living and functional skills in children from birth to 7 years of age. The WeeFIM is modeled after the Functional Independence Measure (FIM) for adults and includes 18 items in the following subscales: self-care, sphincter control, transfers, locomotion, communication, and social cognition. RESULTS: Kappa values for items ranged from .44 to .82. Intraclass correlation coefficients (ICC) for the six subscales ranged from .73 to .98. Total WeeFIM ICC values were greater than .95 for all analyses. CONCLUSIONS: The WeeFIM ratings for the 205 children with developmental disabilities participating in this investigation were consistent across raters and time.
1997
Ottenbacher KJ; Msall ME; Lyon NR; Duffy LC; Granger CV; Braun S
Archives Of Physical Medicine And Rehabilitation
1997
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Journal Article
<a href="http://doi.org/10.1016/s0003-9993(97)90302-6" target="_blank" rel="noreferrer">10.1016/s0003-9993(97)90302-6</a>
Relationship of illness severity and length of stay to functional outcomes in the pediatric intensive care unit: a multi-institutional study
Child; Humans; United States; Intensive Care Units; Cohort Studies; Logistic Models; Prospective Studies; Severity of Illness Index; Observer Variation; Nonparametric; Statistics; ICU Decision Making; Pediatric/statistics & numerical data; Length of Stay/statistics & numerical data; Outcome and Process Assessment (Health Care)/statistics & numerical data
OBJECTIVE: The purpose of this study was to establish relationships between illness severity, length of stay, and functional outcomes in the pediatric intensive care unit (PICU) by using multi-institutional data. We hypothesized that a positive relationship exists between functional outcome scores, severity of illness, and length of stay. DESIGN: The study used a prospective multicentered inception cohort design. SETTING: The study was conducted in 16 PICUs across the United States that were member institutions of the Pediatric Critical Care Study Group of the Society of Critical Care Medicine. PATIENTS: In total, 11,106 patients were assessed, representing all admissions to these intensive care units for 12 consecutive months. MEASUREMENTS: Functional outcomes were measured by the Pediatric Overall Performance Category (POPC) and Pediatric Cerebral Performance Category (PCPC) scales. Both scales were assessed at baseline and discharge from the PICU. Delta scores were formed by subtracting baseline scores from discharge scores. Other measurements included admission Pediatric Risk of Mortality scores, age, operative status, length of stay in the PICU, and diagnoses. Interrater reliability was assessed by using a set of ten standardized cases on two occasions 6 months apart. MAIN RESULTS: Baseline, discharge, and delta POPC and PCPC outcome scores were associated with length of stay in the PICU and with predicted risk of mortality (p < .01). Incorporation of baseline functional status in multivariate length of stay analyses improved measured fit. Mild baseline cerebral deficits in children were associated with 18% longer PICU stays after controlling for other patient and institutional characteristics. Moderate and severe baseline deficits for both the POPC and PCPC score predict increased length of stay of between 30% and 40%. On the standardized cases, interrater consensus was achieved on 82% of scores with agreement to within one neighboring class for 99.7% of scores. CONCLUSIONS: These data establish current relationships for the POPC and PCPC outcome scales based on multi-institutional data. The reported relationships can be used as reference values for evaluating clinical programs or for clinical outcomes research.
2000
Fiser DH; Tilford JM; Roberson PK
Critical Care Medicine
2000
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Journal Article
<a href="http://doi.org/10.1097/00003246-200004000-00043" target="_blank" rel="noreferrer">10.1097/00003246-200004000-00043</a>
Choices and control: parental experiences in pediatric terminal home care
Child; Humans; Choice Behavior; Internal-External Control; Reproducibility of Results; Observer Variation; adolescent; Preschool; Adaptation; Psychological; Parents/psychology; location of death; Home Care Services/statistics & numerical data; Caregivers/psychology/statistics & numerical data; Interviews/methods; Terminal Care/psychology/statistics & numerical data
During the past decade, palliative care at home has become an alternative option to hospital care for terminally ill children. This study describes the experience of caring for a dying child at home from a parent's perspective. A qualitative research design was used to conduct and analyze data. Nonstandardized, focused interviews were conducted with 10 families. Thematic content analysis assisted in deriving themes from the transcripts of the interviews. "Choice and control" was the major theme that linked all the other concepts, and it appeared to be fundamental to parental coping strategies. Most parents were willing to take responsibility for the nursing care of their child, including administration of intravenous medication. The patient's home was the overwhelming choice of parents for delivery of terminal care, with most parents perceiving it as their child's choice also.
Vickers JL; Carlisle C
Journal Of Pediatric Oncology Nursing
2000
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Journal Article
<a href="http://doi.org/10.1177/104345420001700103" target="_blank" rel="noreferrer">10.1177/104345420001700103</a>
Equivalence reliability of the functional independence measure for children (WeeFIM) administration methods.
Child; Female; Humans; Male; Interviews as Topic; Longitudinal Studies; Activities of Daily Living; Reproducibility of Results; Psychometrics; Observer Variation; Disability Evaluation; Preschool; infant; Cerebral Palsy/rehabilitation; Developmental Disabilities/rehabilitation; Down Syndrome/rehabilitation
OBJECTIVE: This study examined the equivalence reliability of two administration methods for the Functional Independence Measure for Children (WeeFIM). The two methods were direct observation of child performance and parental interview. METHOD: Thirty children between the ages of 19 months and 71 months with identified developmental disabilities were included in this study. The direct observation and interview methods were administered in random order to each subject within a 3-week period. The direct observation was completed in the educational setting, and the WeeFIM interview was obtained by either in-person interview or telephone interview with the parent. RESULTS: The intraclass correlation coefficient (ICC) for total WeeFIM ratings was .93, indicating consistency between the two administration methods. Analysis of the WeeFIM Motor (13 items) and Cognitive (5 items) domains yielded ICC values of .93 and .75, respectively, suggesting greater consistency for items measuring motor-related skills. CONCLUSION: The results demonstrate good agreement for total ratings when the WeeFIM is administered by direct observation and by interview with a parent. The findings establish the clinical usefulness of information collected by clinical interview.
1997
Sperle PA; Ottenbacher KJ; Braun SL; Lane SJ; Nochajski S
The American Journal Of Occupational Therapy.: Official Publication Of The American Occupational Therapy Association
1997
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Journal Article
<a href="http://doi.org/10.5014/ajot.51.1.35" target="_blank" rel="noreferrer">10.5014/ajot.51.1.35</a>