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1.
Qual Life Res ; 33(7): 1881-1891, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38700756

RESUMEN

PURPOSE: The primary aim was to determine Child Health Utility 9D (CHU9D) utilities from the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) for non-ambulatory children with cerebral palsy (CP). METHODS: One hundred and eight surveys completed by Australian parents/caregivers of children with CP were analysed. Spearman's coefficients were used to investigate the correlations between the two instruments. Ordinary least square, robust MM-estimator, and generalised linear models (GLM) with four combinations of families and links were developed to estimate CHU9D utilities from either the CPCHILD total score or CPCHILD domains scores. Internal validation was performed using 5-fold cross-validation and random sampling validation. The best performing algorithms were identified based on mean absolute error (MAE), concordance correlation coefficient (CCC), and the difference between predicted and observed means of CHU9D. RESULTS: Moderate correlations (ρ 0.4-0.6) were observed between domains of the CHU9D and CPCHILD instruments. The best performing algorithm when considering the CPCHILD total score was a generalised linear regression (GLM) Gamma family and logit link (MAE = 0.156, CCC = 0.508). Additionally, the GLM Gamma family logit link using CPCHILD comfort and emotion, quality of life, and health domain scores also performed well (MAE = 0.152, CCC = 0.552). CONCLUSION: This study established algorithms for estimating CHU9D utilities from CPCHILD scores for non-ambulatory children with CP. The determined algorithms can be valuable for estimating quality-adjusted life years for cost-utility analysis when only the CPCHILD instrument is available. However, further studies with larger sample sizes and external validation are recommended to validate these findings.


Asunto(s)
Algoritmos , Cuidadores , Parálisis Cerebral , Niños con Discapacidad , Calidad de Vida , Humanos , Niño , Masculino , Femenino , Cuidadores/psicología , Niños con Discapacidad/psicología , Australia , Encuestas y Cuestionarios , Parálisis Cerebral/psicología , Preescolar , Salud Infantil , Adolescente , Psicometría , Estado de Salud
2.
Acta Paediatr ; 113(2): 353-361, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38009533

RESUMEN

AIM: We investigated the reliability and validity of the Danish child and parent versions of the Gait Outcomes Assessment List (GOAL) questionnaires for ambulatory children with cerebral palsy (CP). METHODS: Translation and cultural adaptations were performed and content validity evaluated. Participants were enrolled between 2016 and 2018 from Aarhus University Hospital, Denmark. Children and parents completed the GOAL questionnaires twice for test-retest reliability. Discriminative validity was evaluated by comparing the child and parent GOAL scores between children with Gross Motor Function Classification System (GMFCS) levels I and II. The concurrent validity of the GOAL questionnaires were investigated by comparing them with Challenge-20, which assesses motor skills in children with CP. RESULTS: We studied 59 children (57% boys) with CP and GMFCS I-II at a mean age of 10.6 years. Test-retest intra-class correlations were excellent for the children (0.91, 95% confidence interval (CI) 0.83-0.96) and good for the parents (0.83, 95% CI 0.67-0.91). GOAL scores decreased with increasing GMFCS (p < 0.05). Both versions correlated well. The mean children's scores were significantly (6.2/100) higher than the parents' (p < 0.001). The GOAL scores correlated positively with Challenge-20. CONCLUSION: The Danish GOAL child and parent questionnaires demonstrated good reliability and content and discriminative and concurrent validity.


Asunto(s)
Parálisis Cerebral , Niño , Masculino , Humanos , Femenino , Parálisis Cerebral/diagnóstico , Reproducibilidad de los Resultados , Marcha , Encuestas y Cuestionarios , Padres , Evaluación de Resultado en la Atención de Salud , Dinamarca
3.
Disabil Rehabil ; 44(16): 4485-4492, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-33955308

RESUMEN

PURPOSE: To translate and cross-culturally adapt the Challenge, and investigate the reliability and minimal detectable change (MDC) of the Danish Challenge in children with cerebral palsy (CP). MATERIALS AND METHODS: A Danish version of the Challenge was created through a standardized translation process. Four physiotherapists evaluated face validity. Independently ambulatory children with CP were tested. Live performance rating was conducted by assessors independently scoring the Challenge. Video-rating was undertaken for a subset of assessments. Same day assessment test-retest reliability was estimated. The Challenge's Best Score Total was of primary interest. RESULTS: Forty-five children (5-18 years: mean 10 years 9 months; 19 girls) in Gross Motor Function Classification System levels I and II were tested. Inter-rater reliability was excellent for live assessments (n = 45) ICC = 0.998 (95% CI 0.998-0.999) and video assessments (n = 15) ICC = 0.991 (95% CI 0.963-0.997) and intra-rater reliability was excellent for live versus video-recorded assessments (n = 10) ICC = 0.977 (95% CI 0.895-0.994). Test-retest reliability (n = 22) was excellent with ICC = 0.991 (95% CI 0.979-0.996) and minimal detectable change (MDC90) of 4.7 points. CONCLUSIONS: The Danish Challenge showed excellent reliability in this testing context when physiotherapists scored from live- or video-recorded assessments. The Challenge's ability to detect 4.7 points change seems a clinically realistic target for progress. Clinical trial registration: This trial has been approved by the Data Protection Agency, Central Region Denmark, Ref nr.: 615216, Case nr.: 1-16-02-46-16. Registration date: 01-01-2016.Implications for rehabilitationThe Challenge remained reliable and maintained a promising minimal detectable change of less than five points after translation and cultural adaptation.The Danish version of the Challenge 20-item version can be used to measure advanced motor skill performance in children with cerebral palsy, GMFCS level I and GMFCS level II.Challenge live scoring is as reliable as the more time-consuming video-recorded scoring, meaning that physiotherapists can choose the method that fits best with their clinical context and preference.


Asunto(s)
Parálisis Cerebral , Niño , Dinamarca , Evaluación de la Discapacidad , Femenino , Humanos , Destreza Motora , Reproducibilidad de los Resultados , Traducciones
4.
Open Forum Infect Dis ; 7(10): ofaa357, 2020 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-33123607

RESUMEN

BACKGROUND: Despite increasing recognition of the importance of optimal antibiotic selection and expansion of antimicrobial stewardship activities to ambulatory settings, few studies have examined the frequency of parenteral antibiotic use among ambulatory children. We assessed the prevalence and patterns of parenteral antibiotic administration among ambulatory children in pediatric emergency departments (EDs). METHODS: We conducted a cross-sectional assessment of parenteral antibiotic use among ambulatory children aged 0-18 years in 49 US children's hospital EDs in 2018. We assessed the prevalence rates of parenteral antibiotic use and stratified these by patient-, clinic-, and hospital-level characteristics. We also assessed the prevalence of use of specific antibiotics by age and diagnosis category. Among encounters associated with an infection diagnosis, we identified factors associated with parenteral antibiotic use using multivariable logistic regression. RESULTS: Among 3 452 011 ambulatory ED encounters in 2018, parenteral antibiotics were administered in 62 648 (1.8%). The highest proportion of parenteral antibiotic use occurred in the 15-18-year age group (3.3%) and among encounters in children with complex chronic conditions (8.9%) and with primary diagnoses of neoplasms (36%). Ceftriaxone was the most commonly administered parenteral antibiotic (61%). In multivariable analysis, several factors including age ≤2 months, White race, private insurance, complex chronic conditions, digestive and genitourinary system diseases, and encounters attributed to emergency medicine providers were significantly associated with higher odds of parenteral antibiotic use. CONCLUSIONS: This study demonstrates substantial variability in the frequency of parenteral antibiotic administration by age and diagnosis in the ambulatory ED setting and highlights potential opportunities to target stewardship activities.

5.
Bone Joint J ; 102-B(2): 261-267, 2020 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-32009441

RESUMEN

AIMS: It is uncertain whether instrumented spinal fixation in nonambulatory children with neuromuscular scoliosis should finish at L5 or be extended to the pelvis. Pelvic fixation has been shown to be associated with up to 30% complication rates, but is regarded by some as the standard for correction of deformity in these conditions. The incidence of failure when comparing the most caudal level of instrumentation, either L5 or the pelvis, using all-pedicle screw instrumentation has not previously been reported. In this retrospective study, we compared nonambulatory patients undergoing surgery at two centres: one that routinely instrumented to L5 and the other to the pelvis. METHODS: In all, 91 nonambulatory patients with neuromuscular scoliosis were included. All underwent surgery using bilateral, segmental, pedicle screw instrumentation. A total of 40 patients underwent fusion to L5 and 51 had their fixation extended to the pelvis. The two groups were assessed for differences in terms of clinical and radiological findings, as well as complications. RESULTS: The main curve (MC) was a mean of 90° (40° to 141°) preoperatively and 46° (15° to 82°) at two-year follow-up in the L5 group, and 82° (33° to 116°) and 19° (1° to 60°) in the pelvic group (p < 0.001 at follow-up). Correction of MC and pelvic obliquity (POB) were statistically greater in the pelvic group (p < 0.001). There was no statistically significant difference in the operating time, blood loss, or complications. Loss of MC correction (> 10°) was more common in patients fixated to the pelvis (23% vs 3%; p = 0.032), while loss of pelvic obliquity correction was more frequent in the L5 group (25% vs 0%; p = 0.007). Risk factors for loss of correction (either POB or MC) included preoperative coronal imbalance (> 50 mm, odds ratio (OR) 11.5, 95%confidence interval (CI) 2.0 to 65; p = 0.006) and postoperative sagittal imbalance (> 25 mm, OR 11.0, 95% CI1.9 to 65; p = 0.008). CONCLUSION: We found that patients undergoing pelvic fixation had a greater correction of MC and POB. The rate of complications was not different. Preoperative coronal and postoperative sagittal imbalance were associated with increased risks of loss of correction, regardless of extent of fixation. Therefore, we recommend pelvic fixation in all nonambulatory children with neuromuscular scoliosis where coronal or sagittal imbalance are present preoperatively. Cite this article: Bone Joint J 2020;102-B(2):261-267.


Asunto(s)
Vértebras Lumbares/cirugía , Sacro/cirugía , Escoliosis/cirugía , Fusión Vertebral/métodos , Adolescente , Niño , Femenino , Estudios de Seguimiento , Humanos , Masculino , Limitación de la Movilidad , Tornillos Pediculares , Estudios Retrospectivos , Escoliosis/complicaciones , Fusión Vertebral/instrumentación , Resultado del Tratamiento
6.
Disabil Rehabil ; 37(5): 411-6, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-24856788

RESUMEN

PURPOSE: To assess the reliability and validity of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)-Dutch Version, a proxy measure of health status and well-being of non-ambulatory children with cerebral palsy (CP). METHODS: Parents (n = 66) of 47 boys/19 girls between 5 and 18 years with CP (GMFCS IV-V) participated. To assess the reliability each domain and the total measure was tested for internal consistency, test-retest and inter-rater reliability. Known-groups validity of the CPCHILD-DV was assessed by comparing mean scores of clinically distinct subgroups and convergent validity by correlating the CPCHILD-DV with the TNO-AZL Preschool Children Quality of Life (TAPQOL). RESULTS: The mean CPCHILD-DV total score was 52.0 (SD11.5). Test-retest reliability of the total score as assessed by intraclass correlations (ICC) was 0.73 (domains: 0.55-0.80). For the inter-rater reliability the ICC was 0.64 (domains: 0.58-0.90); the Cronbach's alpha's ranged from 0.60 to 0.95. The CPCHILD score could differentiate between GMFCS levels and between subgroups of cognitive level in the domain "communication and social interaction". There were moderate significant correlations (range r(s): 0.31-0.50) between sections of CPCHILD-DV and TAPQOL. CONCLUSIONS: The CPCHILD-DV has sufficient reliability and validity as a proxy measure of health status and well-being of non-ambulatory children with CP.


Asunto(s)
Cuidadores , Parálisis Cerebral/epidemiología , Niños con Discapacidad , Calidad de Vida , Adolescente , Adulto , Niño , Protección a la Infancia , Preescolar , Femenino , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Países Bajos , Padres , Reproducibilidad de los Resultados , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios
7.
Ann Phys Rehabil Med ; 57(9-10): 640-52, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-25455025

RESUMEN

OBJECTIVES: If the benefits of single-event multilevel surgery (SEMS) in ambulatory children with cerebral palsy have already been validated, especially in terms of functional outcomes, fewer studies have evaluated SEMS in terms of quality of life and satisfaction with surgical outcomes, especially pertaining to the opinions of children and their family. The objectives of this study were to confront the perceptions of parents and the experience of their operated children in terms of quality of life and surgical outcomes. MATERIALS AND METHODS: This was an observational, descriptive, single-center study conducted in a regional Pediatric Physical Medicine and Rehabilitation (PM&R) center, which is considered a reference center in this region of France. The subjects recruited were ambulatory children with cerebral palsy (CP) who had SEMS between 2009 and 2011, and one of their parents. The specific "child" and "parent" CP-related modules of the DISABKIDS questionnaire were used to assess these children's quality of life post-surgery. Perceptions of parents and children regarding gait evolution and satisfaction with surgical outcomes were analyzed via a questionnaire developed by the author. Regarding quality of life and surgical outcomes, the correlation between the perception of parents and experience of children was estimated using the intraclass correlation coefficient (ICC) or prevalence-adjusted bias-adjusted kappa values (PABAK). RESULTS: Twelve children (83% of them boys) and their parents participated in the study. For the DISABKIDS questionnaire, a moderate correlation was found regarding functional impact (ICC=0.58; P<0.0178) but a high correlation was reported for the communication item of the questionnaire (ICC=0.73; P=0.0025). Regarding satisfaction with surgical outcomes, results showed a good correlation (PABAK=0.64). CONCLUSION: Concerning quality of life and satisfaction with surgical outcomes, our study showed a good or even high correlation between parents' perceptions and their child's experience. It is however essential to privilege the child's opinion whenever possible.


Asunto(s)
Parálisis Cerebral/cirugía , Padres/psicología , Satisfacción del Paciente , Calidad de Vida , Adolescente , Parálisis Cerebral/fisiopatología , Niño , Femenino , Marcha , Humanos , Masculino , Percepción , Encuestas y Cuestionarios
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