Developmental Medicine and Child Neurology最新文献

Aim: To explore parents' experiences of early screening for cerebral palsy (CP) in three Australian states.

Method: This is a qualitative description study using semi-structured interviews. Participants were parents of children who had CP (n = 5), or high risk of CP (n = 10), or no CP (n = 11) at 2 years, and had completed early screening for CP. Data were analysed using reflexive thematic analysis.

Results: Three themes describe parents' experiences of early screening. (1) 'A new, destabilized world' explores how parents are thrown into an unexpected parenting pathway with the birth of an infant at high risk of having developmental challenges. (2) 'Early is best … but not easy' explores parents' desire for information, screening, and developmental support, to be delivered as early as possible, even when this was experienced as emotionally challenging. (3) 'Trying to reach stable ground' describes the resources and actions parents used to move forward and reach a place of stability and control. These included access to knowledge, proactive 'next steps', and supportive relationships with health-care professionals.

Interpretation: Parents valued and desired early information and support for their child regardless of a diagnosis of CP. Early screening was most valued when it was clearly associated with practical supports, such as early intervention and access to funding.

Aim: To identify, describe, and synthesize available evidence on the longitudinal relationship between hip displacement and hip function, using the International Classification of Functioning, Disability and Health (ICF) framework, in children and adolescents with cerebral palsy (CP) aged up to 18 years.

Method: Five databases were searched systematically from inception to May 2022. Study and sample characteristics, and hip displacement and hip function measures, mapped to the ICF domains, were extracted for narrative synthesis.

Results: Twenty-nine studies were included: four longitudinal registry-based studies; 12 prospective studies; 12 retrospective studies; and one randomized controlled trial. Sample size ranged from 11 to 267. Twenty-seven (93%) studies entailed an intervention: surgery (n = 16); rehabilitation (n = 2); nerve block or botulinum neurotoxin A injection (n = 4); and combined surgery and injection (n = 2). Twenty-six studies (90%) reported outcomes at the body structure and function and impairment domain of the ICF; 17 (59%) reported outcomes in the activity domain; and three (10%) included participation measures. The most common hip displacement measure was Reimers' migration percentage (79%).

Interpretation: Because of the inclusion of interventions in most studies, and the preponderance of retrospective studies, the relationship between hip displacement and hip function in CP is unclear. More high-quality prospective evidence on the natural history of hip displacement, and its effect on function, is needed to improve population-wide screening of children with CP.

Therapeutic hypothermia is an effective therapy for moderate-to-severe hypoxic-ischemic encephalopathy (HIE) in infants born at term or near-term in high-resource settings. Yet there remains a substantial proportion of infants who do not benefit or who will have significant disability despite therapeutic hypothermia. Novel investigational therapies that may confer additional neuroprotection by targeting known pathogenic mechanisms of hypoxic-ischemic brain injury are under development. This review focuses on putative neuroprotective agents that have shown promise in animal models of HIE, and that have been translated to clinical studies in neonates with HIE. We include agents that have been studied both with and without concurrent therapeutic hypothermia. Our review therefore addresses not just neonatal HIE in high-resource countries where therapeutic hypothermia is the standard of care, but also neonatal HIE in low- and middle-income countries where therapeutic hypothermia has been shown to be ineffective, and where the greatest burden of HIE-related morbidity and mortality exists.

Aim: To describe the experiences of children with self-injurious behavior (SIB) through the lens of family caregivers to inform the development of relevant interventions.

Method: SIB in children with autism spectrum disorder is challenging to understand and manage. Furthermore, our understanding of the impact of SIB on families is limited. We performed an exploratory qualitative study using interpretive description methodology. Semi-structured one-on-one interviews were conducted as the primary data collection technique. A purposive convenience sampling technique was used for the recruitment of participants through several clinics at one institution. Enrollment continued until 12 participants were recruited, at which time consensus was reached by the study team that sufficient data had been obtained to develop a depth of understanding of key elements of the caregiver perspective. Data were then analysed using a thematic analysis approach to develop overarching themes.

Results: Three main themes were developed from the analysis of the data: the pervasive impact of SIB; lack of resources to turn toward; and the presence of silver linings. Participants described in some detail the many elements of their children's condition that led to a pervasive impact far beyond the child themselves. This experience was augmented by stigma and the lack of available resources. Despite these challenges, there was a strong sense of resilience and hope.

Interpretation: Our study provides insights into the patterns of experiences of family caregivers of children with SIB. These results have far-reaching implications ranging from the clinical need for enhanced care and collaboration with affected families, the call for researchers to further develop effective treatments, and lastly highlighting the need to work with policymakers to advocate for resources to support children with SIB and their families.

Aim: To investigate the effect of selective dorsal rhizotomy (SDR) on an integrated outcome set 1-year post-SDR, in a cohort of children with spastic cerebral palsy (CP).

Method: Fifteen children with bilateral spastic CP (median age 8 years 8 months [interquartile range 3 years 3 months], 11 males, four females, eight in Gross Motor Function Classification System (GMFCS) level II, seven in GMFCS level III) were measured pre- and 1-year post-SDR. Clinical scales and goniometry assessed plantar flexor spasticity, range of motion, strength, and selectivity. Spasticity was also quantified via an instrumented assessment. Medial gastrocnemius macroscopic muscle morphology (absolute and normalized muscle belly, tendon and muscle-tendon unit length, cross-sectional area, muscle volume) was assessed using ultrasound. Gait profile score, ankle and knee gait variable scores, walking speed, cadence, and step length were extracted from gait analysis. Gross motor function was assessed using the Gross Motor Function Measure-66 item set. Wilcoxon signed-rank test was used to analyse pre- and post-SDR changes. A reference database was used to qualitatively judge muscle growth post-SDR with respect to muscle growth of children with spastic CP without SDR intervention.

Results: Significant changes (p < 0.05) were seen for spasticity, selectivity, all absolute morphology parameters, normalized tendon and muscle-tendon unit length, and all gait parameters, except walking speed and cadence. Muscle growth of children with and without SDR was comparable.

Interpretation: SDR is an effective spasticity reducing treatment and does not adversely affect natural muscle growth in spastic CP.

After conceiving through assisted reproductive technologies (ART), parents may present to their pediatrician with concerns related to their child's neurodevelopment, including whether their child's health may be related to their use of ART. Pediatricians may be unfamiliar with the ART process and what the families endured up to this point, resulting in difficulty counseling parents through these discussions. Before presentation to the pediatrician, parents have undergone extensive evaluation with reproductive endocrinologists. During counseling, the reproductive endocrinologist provides information on maternal and childhood risks associated with ART. However, in this rapidly evolving field, providing comprehensive, patient-centered, informed consent is increasingly complex and counseling patients properly can be challenging. When parents have gone through the proper informed consent process, and when the pediatrician has an understanding of what this process entails, care of the child can be optimized. In this review, we discuss the complexities of the prenatal informed consent process that parents navigate before presenting to pediatricians. We emphasize the importance of these discussions and highlight ethical principles, as well as emotional, medical, legal, and financial stressors that parents face during ART, with the belief that this understanding will improve the care that pediatricians subsequently provide.

Cerebral palsy (CP) is a condition that affects muscle coordination and movement, often from birth. The researchers wanted to see if a specific type of motor training called iMOVE (Intensive Mobility training with Variability and Error) could improve the motor skills of children with CP.

The study involved a group of young children with CP who were randomly assigned to either a treatment group or a control group. The treatment group received the iMOVE motor training, which encouraged child-initiated movement, independent motor practice, movement error and variability, while the control group received usual therapy. This kind of study design, known as a randomized controlled trial, is considered a strong way to test the effectiveness of interventions because it reduces bias.

Both groups received therapy three times a week for 12 to 24 weeks. The researchers observed how the children moved before, during, and after the therapy.

The results showed that the children in both groups made significant improvements in their gross motor skills. There were no major differences between the two groups, even though the iMOVE group experienced more falls, more independent practice, and higher child-initiation. Together, one-third of the children improved more than expected after 12 weeks, and most children (77%) improved more than expected after 24 weeks.

Though iMOVE therapy was not superior to the control (conventional physical) therapy, the study provides evidence that both therapy programs were effective interventions for young children with CP. This could lead to better therapeutic strategies and support for these children, helping them achieve greater independence and fuller participation in daily activities.

People with a neurodisability can benefit from the different therapies that a team of health professionals can offer. Rehabilitation can be helpful to develop and improve people's physical, language, thinking, and emotional skills. Music is thought to be helpful for people who have a neurodisability because it is motivating and enjoyable. We have good understanding of the benefits of music therapy for adults with a neurodisability, but we know less about the use of music therapy with younger people.

In this study, we used a type of literature review, called a scoping review, to find out what has been written about music therapy for children and adolescents with a neurodisability, and what research if any, has been done. We wanted to learn what skills music therapy can help children and adolescents with a neurodisability develop during their rehabilitation. We followed a careful process called PRISMA-ScR to search for examples of writing on this subject and found 53 examples. Our article shares the results of our study.

We found that children and adolescents with a neurodisability will develop a range of skills, if they access music therapy in their rehabilitation. These skills can be physical; talking and interacting with other people; thinking; behaving; or involve their feelings.

We wanted to know if the PEDI-PRO was a good (or accurate) way to get a score for each skill.

In total 306 teens and young adults aged 14 to 21 years used the PEDI-PRO. They were from the USA and had disabilities like autism, intellectual disability, and cerebral palsy. They answered all the questions on the PEDI-PRO. Their answers to the PEDI-PRO questions were analyzed using mathematical formulas. The formulas let us know if the PEDI-PRO score for each skill is accurate.