‘Mental health of children and adolescents with Duchenne muscular dystrophy’

Steele, Margaret; Taylor, Elizabeth; Young, Catharina; McGrath, Patricia; Lyttle, Brian; Davidson, Brenda

doi:10.1111/j.1469-8749.2008.03024.x

Cited by 29 publications

(21 citation statements)

References 18 publications

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“…9,13 Study differences were also found for the frequency of behavior problems from those that relied on parent reports on behavior checklists (e.g, Child Behavior Checklist, Strengths and Difficulties Questionnaire) with higher frequencies of behavior problems (>40%) than our observed estimate of 26%. 11,13 These checklists may include a broad range of behaviors that may not have been identified through medical record review, thereby resulting in higher reported frequencies.…”

Section: Discussioncontrasting

confidence: 53%

“…4–7 Among the neurobehavioral concerns studied, higher frequencies of ADHD, 6,8,9 autism spectrum disorder, 8,10–13 and obsessive-compulsive disorder (OCD) 8 have been reported for those affected with a dystrophinopathy compared to the general population. 8,11 Other studies have reported high levels of clinically significant externalizing and internalizing behaviors 11,13–15 and difficulties with social functioning 11,14–16 among affected individuals.…”

Section: Objectivementioning

confidence: 99%

“…Many relied on convenience samples identified from clinics 6,9,10,12–15,20 or recruited from patient support or advocacy groups, 8,15 which may not be representative of the overall patient population. These studies were also cross-sectional, sampled a broad age range of patients, and many relied on behavioral checklists for self- or parent-report of neurobehavioral concerns.…”

Section: Objectivementioning

confidence: 99%

“…These studies were also cross-sectional, sampled a broad age range of patients, and many relied on behavioral checklists for self- or parent-report of neurobehavioral concerns. 8,9,11,13,15,16,20 These methodological limitations make it difficult to fully evaluate frequencies of neurobehavioral concerns among those with a dystrophinopathy and preclude the use of appropriate analytic methods that could provide more accurate frequency estimates and evaluate time-ordered associations with disease progression and treatments.…”

Section: Objectivementioning

confidence: 99%

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Neurobehavioral Concerns Among Males with Dystrophinopathy Using Population-Based Surveillance Data from the Muscular Dystrophy Surveillance, Tracking, and Research Network

Conway

Mathews

Paramsothy

et al. 2015

Journal of Developmental &Amp; Behavioral Pediatrics

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Objective To describe the occurrence of selected neurobehavioral concerns among males with a dystrophinopathy and explore associations with corticosteroid or supportive device use. Method Medical record abstraction of neurobehavioral concerns was conducted for 857 affected males from 765 families, born since 1982 and followed through 2011, and enrolled in the population-based Muscular Dystrophy Surveillance, Tracking, and Research Network. Cumulative probabilities for attention deficit/hyperactivity disorder (ADHD), behavior problems, and depressed mood were calculated from Kaplan-Meier estimates for the subsample of oldest affected males (n=765). Hazard ratios (HRs) and 95% confidence intervals (95%CIs) for corticosteroid and supportive device use were estimated from Cox regression models with time-dependent covariates. Results Of the 857 affected males, 375 (44%) had at least one of the three selected neurobehavioral concerns; a similar percentage (45%) was found among the 765 oldest affected males. The estimated cumulative probabilities among these oldest affected males were 23% for ADHD, 43% for behavior problems, and 51% for depressed mood. Corticosteroid (HR=2.35, 95%CI=1.75,3.16) and mobility device (HR=1.53, 95%CI=1.06,2.21) use were associated with behavior problems. Use of a mobility device (HR=3.53, 95%CI=2.13,5.85), but not corticosteroids, was associated with depressed mood. ADHD was not significantly associated with corticosteroid or mobility device use. Respiratory assist device use was not examined due to low numbers of users prior to onset of neurobehavioral concerns. Conclusion Selected neurobehavioral concerns were common among males with a dystrophinopathy. Reported associations highlight the importance of increased monitoring of neurobehavioral concerns as interventions are implemented and disease progresses.

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Section: Discussioncontrasting

confidence: 53%

Section: Objectivementioning

confidence: 99%

Section: Objectivementioning

confidence: 99%

Section: Objectivementioning

confidence: 99%

See 2 more Smart Citations

Neurobehavioral Concerns Among Males with Dystrophinopathy Using Population-Based Surveillance Data from the Muscular Dystrophy Surveillance, Tracking, and Research Network

Conway

Mathews

Paramsothy

et al. 2015

Journal of Developmental &Amp; Behavioral Pediatrics

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show abstract

“…Dados interessantes também foram recentemente publicados sobre uma alta incidência de Transtorno de Déficit Atenção/ Hiperatividade (TDAH) nos meninos com DMD, mesmo que em estudos preliminares (Steele et al, 2008) ou por meio de entrevista qualitativa com os pais dos meninos (Hilton et al, 2006;Hendriksen & Vles, 2008).…”

Section: Nahas E Xavierunclassified

Alterações atencionais na distrofia muscular de duchenne

Moura¹

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The NIH Toolbox for cognitive surveillance in Duchenne muscular dystrophy

Thangarajh

Kaat

Bibat

et al. 2019

Ann Clin Transl Neurol

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Objective We performed a prospective, cross‐sectional cognitive assessment in subjects with Duchenne Muscular Dystrophy (DMD) and their biological mothers. Methods Thirty subjects with out‐of‐frame mutations in the dystrophin (DMD) gene, and 25 biological mothers were evaluated using the National Institutes of Health Toolbox Cognition Battery (NIHTB‐CB). A parent completed the Behavior Rating Inventory of Executive Functioning (BRIEF), a standardized rating scale of executive functioning, for their child. Mothers completed self‐reports of BRIEF and Neuro Quality‐of‐Life (NeuroQoL) Cognitive Function. Results Overall, the subjects with DMD scored approximately one standard deviation (SD) below age‐corrected norms on the NIHTB‐CB Total Cognition score. They scored 1.5 SD below age‐corrected norms in Fluid Cognition, which evaluates the cognitive domains of executive function, working memory, episodic memory, attention, and processing speed. Their performance was consistent with age expectations (i.e., within 1 SD below age‐corrected norms) in Crystalized Cognition, which evaluates vocabulary and reading. Subjects with DMD had higher T‐scores in several domains of BRIEF, demonstrating greater difficulty in executive functioning. The biological mothers had overall average or above average T‐scores on NIHTB‐CB. Mothers who were carriers of DMD mutation performed lower overall compared to mothers who were not carriers of DMD mutation (Cohen’s d = −1.1). Carrier mothers performed lower than average (1.5 SD) in Executive Function, measured by Flanker Inhibitory Control and Attention. Biological mothers scored within expected score ranges for adults in BRIEF and NeuroQoL. Interpretation The NIHTB‐CB, combined with standardized self‐reported measures, can be a sensitive screening tool for cognitive surveillance in DMD.

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‘Mental health of children and adolescents with Duchenne muscular dystrophy’

Cited by 29 publications

References 18 publications

Neurobehavioral Concerns Among Males with Dystrophinopathy Using Population-Based Surveillance Data from the Muscular Dystrophy Surveillance, Tracking, and Research Network

Neurobehavioral Concerns Among Males with Dystrophinopathy Using Population-Based Surveillance Data from the Muscular Dystrophy Surveillance, Tracking, and Research Network

Alterações atencionais na distrofia muscular de duchenne

The NIH Toolbox for cognitive surveillance in Duchenne muscular dystrophy

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