Journal of pediatric rehabilitation medicine最新文献

Purpose: The incidence of dystonic cerebral palsy causing significant morbidity is on the rise. There is a paucity of evidence for the management of dystonia in children.

Methods: Forty-one children aged 6 months-5 years with predominantly dystonic cerebral palsy were started on a predetermined protocol of trihexyphenidyl (0.25-0.52 mg/kg) and followed up at 3, 6 and 12 weeks. Dystonia severity, motor function and developmental age at baseline and 12 weeks were compared using the Global Dystonia Scale (GDS), the Gross Motor Function Measure (GMFM), and Fine Motor/Perceptual Subscale of the Early Developmental Profile-2. Thirty-four children completed the entire 12 weeks of intervention.

Results: The mean age of participants was 25±11 months. A significant decrease in median total dystonia scores on the GDS was observed post-intervention (74.5 to 59, p < 0.0001), and 64% of participants gained motor milestones. GMFM scores increased significantly from a median of 19.8% pre-intervention to 26.5% post-intervention (p < 0.0001). There was improvement in the fine motor domain as compared to the baseline (p < 0.0001). The number of children classified at Gross Motor Function Classification System levels 1 and 2 increased to 47.05% from 5.88% in the pre-intervention group.

Conclusion: Trihexyphenidyl significantly improved dystonia, motor function and development in children with dystonic cerebral palsy in this study. Additional studies are needed to clarify its role in larger numbers of children with this condition.

Whether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a catalyst for transnational dialog in the field of spina bifida (SB) research. Concurrently, the Journal of Pediatric Rehabilitation Medicine (JPRM) provides a platform for both international research as well as numerous clinical and educational projects, such as The Lifespan Bowel Management Protocol, and social interventions taught through the American Academy of Pediatrics' Spina Bifida Transition ECHO. Through this open access issue, work by colleagues in Ethiopia, the Nordic countries, and Switzerland, as well as among other transnational populations is highlighted. The development of the Spina Bifida Global Learning Collaborative is also showcased, representing a training initiative across four continents. Correspondingly in this issue, JPRM published an update to the Transition Guidelines for the Care of People with Spina Bifida. The clinical guidelines are a product of the SBA Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention. While colleagues across the globe remain committed to native, immigrant, and displaced populations of individuals affected by SB, JPRM will continue to distribute premier research in multidisciplinary care, education, and advocacy.

Purpose: Acute flaccid myelitis (AFM), an uncommon but serious neurologic condition, primarily affects children, and can progress quickly to paralysis and respiratory failure. Data on long-term outcomes of patients with AFM are limited. This study reports on functional status through 12 months for AFM patients who became ill in 2018 in the United States.

Methods: Health departments collected information on outcomes at 6 and 12 months after onset of AFM using a standardized form that asked patients or their parents/guardians about functional status. Analyses were restricted to confirmed cases.

Results: Of the 238 confirmed AFM cases reported to CDC in 2018, 90 (38%) had assessments at 6 months, 82 (34%) at 12 months, and 49 (21%) at both 6 and 12 months. Among the 49 patients with data at both time points, the proportion of patients reporting significant or severe impairment at 6 months ranged from 2% to 59% depending on the outcome. Although proportions decreased by 12 months and ranged from 2% to 51%, most patients had some impairment at 12 months. No deaths were reported.

Conclusion: Six- and 12-month outcomes in patients with onset of AFM in 2018 span a wide range of functionality, particularly of upper and lower extremities. Importantly, improvement appears to occur over time in some patients.

Purpose: This study aimed to explore the feasibility of using time-matched uniaxial accelerometers for measuring movement in daily life in children with cerebral palsy (CP) before and after botulinum toxin injections.

Methods: This observational study of clinical care with a pre-post design was set in the home and school environment. Participants included eleven children (4-13 years of age) with CP (GMFCS I-III). The children wore uniaxial accelerometers (ActiGraph, model GT1M) for 4 days on both wrists, the right ankle and around the waist before, 3 weeks and 3 months after BoNT-A injections in the legs. Five children also got BoNT-A in the most affected arm. All injections were given according to clinical indications and routine. The accelerometers were all time-matched to define ambulation, arm swing, voluntary activity of arms, and bimanual activity. The feasibility of wearing accelerometers with this setup was evaluated. A linear mixed model was used for analysis of the percentage time and at which intensity the different activities were performed. The confidence interval demonstrated any difference between the dominant and non-dominant arm.

Results: Time-matching of accelerometers placed on both wrists, the waist, and one ankle is a feasible method of registering ambulation, arm swing during gait, and arm movements while not ambulating. Before injections, the children spent 5.6% of their time ambulating. This value declined to 3.9% at 3 months. Contrary to clinical goals, arm movement did not increase after injecting the most affected arm with BoNT-A, however, injections may have decreased mirror movements, which are often bothersome for the child.

Conclusion: A time-matched 4-accelerometer set-up is feasible in children with cerebral palsy. A future study including time-matched multi-axial accelerometers on all four limbs, could provide important information on the effect of BoNT-A in daily life.

Purpose: The demands of caring for children with cerebral palsy (CWCP) may lead to burnout among the informal caregivers of these children. However, this subject area has not received significant research attention in Nigeria. The primary aim of this study was to investigate the association between burnout level of informal caregivers of CWCP and the motor performance of the CWCP. The association between burnout level of the informal caregivers and selected clinical variables of CWCP was also investigated.

Methods: This is a descriptive study of 75 consecutively-sampled informal caregivers (34.76±8.7 years) of CWCP and an equal number of their CWCP. Burnout level of the caregivers and motor performance of the CWCP were assessed using the Copenhagen Burnout Inventory (CBI) and Gross Motor Function Classification System Family Questionnaire (GMFCSFQ) respectively. Descriptive and inferential statistics were used to analyse results at alpha = 0.05.

Results: There was a statistically significant positive association between the CBI scores and the GMFCSFQ scores (p < 0.05). Age of the CWCP as well as type and topography of the cerebral palsy were not significantly associated with the caregivers' burnout level. Similarly, the age and sex of the caregivers had no statistically significant association with their burnout level (p > 0.05).

Conclusion: Caregiving for children with lower motor performance is associated with higher burnout among caregivers. This may impact negatively on the overall health of the caregivers and the quality of care for the CWCP.

Proximal humerus fractures in pediatric patients are uncommon. This is a case report of a 17-year-old patient with Duchenne muscular dystrophy who sustained an occult proximal humerus fracture. The patient was on chronic steroids and had a history of vertebral and long bone fractures. He was using a wheeled mobility device on public transportation at the time of injury. He had a negative radiograph, but an MRI revealed a right proximal humerus fracture. He had decreased mobilization in the affected extremity, which limited activities of daily living including driving his power wheelchair. After six weeks of conservative management, he returned to his baseline level of activity. It is important to recognize that chronic steroid use adversely affects bone health, and fractures may be missed on initial imaging. To ensure adequate safety, providers, patients, and their families should be educated on the Americans with Disabilities Act guidelines for using wheeled mobility devices on public transportation.

Purpose: This study aimed to provide a reliable and valid translation of the Scoliosis Research Society-22 (SRS-22r) questionnaire, compare it with the EQ-5D-5 L questionnaire, and analyse health-related quality of life (HRQoL) of patients with idiopathic scoliosis (IS) in Slovenia in order to potentially improve their rehabilitation processes.

Methods: A matched-case-control study was performed to assess internal consistency reliability, test-retest reliability, concurrent validity, and discriminative validity. The questionnaire was returned by 25 adolescent IS patients, 25 adult IS patients, and 25 healthy controls (87%, 71%, and 100% response rate, respectively).

Results: Internal consistency was high for all four scales in the adult IS group, but lower among the adolescent patients. Test-retest reliability of the SRS-22r was high to very high in both patient groups. Correlations between SRS-22r and EQ-5D-5 L were low or close to zero among adolescent patients and moderate or high among adult IS patients. SRS-22r domain scores were statistically significantly different between adult patients and healthy controls.

Conclusion: The study proved that the Slovenian version of SRS-22r has the psychometric properties needed to measure HRQoL, whereby it appears to be more reliable for adults than adolescents. When used with IS adolescents, SRS-22r is affected by a severe ceiling effect. It could be used for longitudinal follow-up of adult patients after rehabilitation treatment. Additionally, some important issues that adolescents and adults with IS are faced with were identified.