Evaluation of assessment of caregiver experience with neuromuscular disease: reliability and responsiveness of a new caregiver-reported outcome measure in patients with cerebral palsy.
Cerebral palsy (CP)
botulinum toxin
caregiver
reliability
responsiveness
Journal
Translational pediatrics
ISSN: 2224-4344
Titre abrégé: Transl Pediatr
Pays: China
ID NLM: 101649179
Informations de publication
Date de publication:
Aug 2020
Aug 2020
Historique:
entrez:
21
9
2020
pubmed:
22
9
2020
medline:
22
9
2020
Statut:
ppublish
Résumé
Cerebral palsy (CP) is the most common cause of chronic childhood disability. Caregivers often provide prolonged care over patients' life span, thus measuring the impact of the disease and its treatments on caregivers has become a recent focus in research. The current study aims to present an evaluation of the reliability and responsiveness of assessment of caregiver experience with neuromuscular disease (ACEND) following botulinum toxin injection to relieve spasticity in children with CP. Patients with baseline ACEND scores and at least one assessment following botulinum toxin injection were enrolled. Data on their gender, age, diagnoses, and functional levels (according to The Gross Motor Function Classification System, GMFCS), and ACEND scores were analyzed. Statistical analyses performed included paired Baseline ACEND scores (117.7±47.7) were strongly correlated with follow-up scores (120.4±49.5) with a coefficient of 0.929 (P<0.001), suggesting the high reliability of the questionnaire. Paired-sample t-test revealed an insignificant average improvement in ACEND of 2.7 (P=0.352). The ICD-10 code and the GMFCS level were found to be significant predictors for baseline (P=0.043, P<0.001) and follow-up ACEND scores (P=0.025, P<0.001). Male gender was a significant predictor for improvement in ACEND scores. We demonstrated the reliability of ACEND through strong correlations of scores before and after botulinum toxin injection. In terms of responsiveness, while the burden of care is largely determined by ICD-10 diagnosis and the GMFCS level, changes in care burden are only related to the gender of the patient and the follow-up time interval.
Sections du résumé
BACKGROUND
BACKGROUND
Cerebral palsy (CP) is the most common cause of chronic childhood disability. Caregivers often provide prolonged care over patients' life span, thus measuring the impact of the disease and its treatments on caregivers has become a recent focus in research. The current study aims to present an evaluation of the reliability and responsiveness of assessment of caregiver experience with neuromuscular disease (ACEND) following botulinum toxin injection to relieve spasticity in children with CP.
METHODS
METHODS
Patients with baseline ACEND scores and at least one assessment following botulinum toxin injection were enrolled. Data on their gender, age, diagnoses, and functional levels (according to The Gross Motor Function Classification System, GMFCS), and ACEND scores were analyzed. Statistical analyses performed included paired
RESULTS
RESULTS
Baseline ACEND scores (117.7±47.7) were strongly correlated with follow-up scores (120.4±49.5) with a coefficient of 0.929 (P<0.001), suggesting the high reliability of the questionnaire. Paired-sample t-test revealed an insignificant average improvement in ACEND of 2.7 (P=0.352). The ICD-10 code and the GMFCS level were found to be significant predictors for baseline (P=0.043, P<0.001) and follow-up ACEND scores (P=0.025, P<0.001). Male gender was a significant predictor for improvement in ACEND scores.
CONCLUSIONS
CONCLUSIONS
We demonstrated the reliability of ACEND through strong correlations of scores before and after botulinum toxin injection. In terms of responsiveness, while the burden of care is largely determined by ICD-10 diagnosis and the GMFCS level, changes in care burden are only related to the gender of the patient and the follow-up time interval.
Identifiants
pubmed: 32953548
doi: 10.21037/tp-19-176
pii: tp-09-04-507
pmc: PMC7475311
doi:
Types de publication
Journal Article
Langues
eng
Pagination
507-512Informations de copyright
2020 Translational Pediatrics. All rights reserved.
Déclaration de conflit d'intérêts
Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at http://dx.doi.org/10.21037/tp-19-176). The authors have no conflicts of interest to declare.
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