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1.
Dev Med Child Neurol ; 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38616771

RESUMO

AIM: To describe the development of an observational measure of spontaneous independent joint motion in infants with spastic cerebral palsy (CP), the Baby Observational Selective Control AppRaisal (BabyOSCAR), and to test its convergent validity and reliability. METHOD: A retrospective sample of 75 infants (45 with spastic CP and 30 without CP) at 3 months of age were scored with the BabyOSCAR and compared with diagnosis of spastic CP, limbs affected, and Gross Motor Function Classification level at 2 years of age or later for convergent validity using t-tests, Kruskal-Wallis tests, and Spearman's rank correlation coefficients. BabyOSCAR interrater and test-retest reliability was also evaluated using intraclass correlation coefficients. RESULTS: Infants with spastic CP had significantly lower BabyOSCAR scores than children without CP (p < 0.001) and scores were significantly correlated with Gross Motor Function Classification System levels (p < 0.001). Children with unilateral CP had significantly higher asymmetry scores than children with bilateral CP or no CP (p < 0.01). Interrater and test-retest reliabilities were good to excellent. INTERPRETATION: Reductions in independent joint control measured in infancy are a hallmark of eventual diagnosis of spastic CP, and influence gross motor function later in childhood (with or without a diagnosis of CP).

2.
Dev Med Child Neurol ; 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38627997

RESUMO

AIM: To investigate the construct validity of the Baby Observational Selective Control AppRaisal (BabyOSCAR), an assessment of independent joint motion in infants with cerebral palsy (CP). METHOD: BabyOSCAR was scored for 75 infants (45 with CP and 30 without CP). Rasch analysis was used in combination with classical test theory to assess areas of strength or improvement. Overall fit and precision, unidimensionality, local independence, reliability indices, Wright's child-item map, and differential item functioning were examined as part of Rasch analysis to investigate the item properties, internal construct validity, and reliability of BabyOSCAR. Cronbach's α was used to evaluate items' internal consistency. RESULTS: Analysis demonstrated good fit to the Rasch model, with only one erratic item. Unidimensionality results suggest two dimensions, split between arm and leg items. Item calibration reliability was between 0.84 and 0.86, with three distinct item difficulty levels. Infant measure reliability was between 0.82 and 0.91, separating infants into three ability levels. Together, the two subscales covered the full range of skills, with redundancy mostly between the same motion on both sides of the body. Cronbach's α was between 0.90 and 0.95. INTERPRETATION: BabyOSCAR's construct validity was supported. Arm and leg subscales can be translated to a logit scale.

3.
Dev Med Child Neurol ; 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38629475

RESUMO

AIM: To assess the predictive capabilities of the Baby Observational Selective Control AppRaisal (BabyOSCAR) tool, administered at 3 months corrected age, in determining spastic cerebral palsy (CP) outcome, functional abilities, and body topography at 2 years of age or later. METHOD: Independent joint motions were measured at age 10 to 16 weeks from video recordings of spontaneous movement using BabyOSCAR in a sample of 75 infants. All included infants had known 2-year outcomes (45 with spastic CP and 30 without CP) including Gross Motor Functional Classification System (GMFCS) levels and CP body distribution. Receiver operating characteristic curves and cut points indicating greatest sensitivity and specificity were generated for predictive performance. RESULTS: Total BabyOSCAR score was a strong predictor of future outcome of spastic CP (cut score of 22.5, sensitivity = 98%, specificity = 100%, area under the curve = 0.99), and was able to distinguish children classified in GMFCS levels I and II from those in III to V (cut score of 13.5, sensitivity = 92%, specificity = 89%, area under the curve = 0.94). Having an (absolute) asymmetry score on the BabyOSCAR of more than 5 was a predictor of having unilateral CP at age 2 years (sensitivity = 56%, specificity = 100%, area under the curve = 0.86). INTERPRETATION: BabyOSCAR scores are predictors of diagnosis, body distribution, and future gross motor function in infants with spastic CP at 2 years of age or later.

4.
Early Hum Dev ; 192: 106008, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38615539

RESUMO

BACKGROUND: The Motor Optimality Score-Revised (MOS-R) is a clinical test of infant spontaneous movement at 3-5 months of age and has been associated with neurodevelopmental outcomes in infants with medical complexity. However the stability of the MOS-R tested at different developmental ages is not yet known. AIM: To determine if the repeated scoring of the MOS-R remained consistent when tested at two developmental ages in young infants. STUDY DESIGN: In this prospective cohort study, infants were tested twice with the MOS-R between 12 and 13 weeks corrected age (CA) and 14-16 weeks CA. Bland Altman Plots were used to calculate agreement between the scores. Infants were grouped as having higher or lower medical complexity. MOS-R threshold scores were analyzed to assess changes over time within each group using Fisher's exact test. SUBJECTS: 85 infants with history of hospitalization in a neonatal intensive care unit (NICU). RESULTS: The MOS-R scores had a high agreement with negligible bias (0.058) between timepoints (95 % CI -1.10, 1.22). Using a MOS-R cut point of 19, infants with higher medical complexity were more likely to change groups between timepoints than infants with lower medical complexity (p = 0.008), but this was not significantly different using cut points of 20 or 21. CONCLUSION: The MOS-R scores were stable when measured repeatedly in infants who were hospitalized in a NICU. Infants with high medical complexity had less stable MOS-R scores using certain cut points than infants with lower medical complexity.


Assuntos
Desenvolvimento Infantil , Humanos , Feminino , Masculino , Lactente , Recém-Nascido , Destreza Motora , Estudos Prospectivos
5.
Front Hum Neurosci ; 18: 1343457, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38445098

RESUMO

Performance in stair-climbing is largely associated with disruptions to mobility and community participation in children with cerebral palsy (CP). It is important to understand the nature of motor impairments responsible for making stairs a challenge in children with bilateral CP to clarify underlying causes of impaired mobility. In pediatric clinical populations, sensitive measurements of movement quality can be captured during the initial step of stair ascent. Thus, the purpose of this study was to quantify the lower limb joint moments of children with bilateral CP during the stance phases of a step-up task. Participants performed multiple stepping trials in a university gait laboratory. Outcome measures included extensor support moments (the sum of hip, knee, and ankle sagittal plane moments), hip abduction moments, and their timing. We recruited seven participants per group. We found that peak support and hip abduction moments were similar in the bilateral CP group compared to the typical development (TD) group. We also found that children with bilateral CP timed their peak moments closer together and increasingly depended on the hip joint to complete the task, especially in their more affected (MA) lower limb. Our investigation highlights some underlying causes that may make stair climbing a challenge for the CP population, including a loss of selective voluntary motor control (SVMC), and provides a possible treatment approach to strengthen lower limb muscles.

6.
J Pediatr ; 269: 113979, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38387754

RESUMO

We assessed the feasibility of obtaining parent-collected General Movement Assessment videos using the Baby Moves app. Among 261 participants from 4 Chicago NICUs, 70% submitted videos. Families living in higher areas of childhood opportunity used the app more than those from areas of lower opportunity.


Assuntos
Estudos de Viabilidade , Unidades de Terapia Intensiva Neonatal , Aplicativos Móveis , Humanos , Recém-Nascido , Feminino , Masculino , Gravação em Vídeo , Chicago , Pais , Lactente
7.
Dev Med Child Neurol ; 66(5): 610-622, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-37650571

RESUMO

AIM: This study describes the process of updating the cerebral palsy (CP) common data elements (CDEs), specifically identifying tools that capture the impact of chronic pain on children's functioning. METHOD: Through a partnership between the American Academy for Cerebral Palsy and Developmental Medicine and the National Institute of Neurological Disorders and Stroke (NINDS), the CP CDEs were developed as data standards for clinical research in neuroscience. Chronic pain was underrepresented in the NINDS CP CDEs version 1.0. A multi-step methodology was applied by an interdisciplinary professional team. Following an adapted CP chronic pain tools' rating system, and a review of psychometric properties, clinical utility, and compliance with inclusion/exclusion criteria, a set of recommended pain tools was posted online for external public comment in May 2022. RESULTS: Fifteen chronic pain tools met inclusion criteria, representing constructs across all components of the International Classification of Functioning, Disability and Health. INTERPRETATION: This paper describes the first condition-specific pain CDEs for a pediatric population. The proposed set of chronic pain tools complement and enhance the applicability of the existing pediatric CP CDEs. The novel CP CDE pain tools harmonize the assessment of chronic pain, addressing not only intensity of chronic pain, but also the functional impact of experiencing it in everyday activities.


Assuntos
Pesquisa Biomédica , Paralisia Cerebral , Dor Crônica , Criança , Humanos , Estados Unidos , Elementos de Dados Comuns , National Institute of Neurological Disorders and Stroke (USA) , Dor Crônica/diagnóstico , Dor Crônica/terapia , Paralisia Cerebral/complicações
8.
medRxiv ; 2023 Oct 22.
Artigo em Inglês | MEDLINE | ID: mdl-37905158

RESUMO

Performance in a single step has been suggested to be sensitive measure of movement quality in pediatric clinical populations. Although there is less information available in children with typical development, researchers have postulated the importance of analyzing the effect of body weight modulation on the initiation of stair ascent, especially during single limb stance where upright stability is most critical. The purpose of this study was to investigate the effect of load modulation from -20% to +15% of body weight on typical pediatric lower limb joint moments during a step-up task. Fourteen participants between 5-21 years with no known history of neurological or musculoskeletal concerns were recruited to perform multiple step-up trials. Peak extensor support and hip abduction moments were identified during the push-off and pull-up stance phases. Linear regressions were used to determine the relationship between peak moments and load. Mixed effects models were used to estimate the effect of load on hip, knee, and ankle percent contributions to peak support moments. There was a positive linear relationship between peak support moments and load in both stance phases, where these moments scaled with load. There was no relationship between peak hip abduction moments and load. While the ankle and knee were the primary contributors to the support moments, the hip contributed more than expected in the pull-up phase. Clinicians can use these results to contextualize movement differences in pediatric clinical populations including cerebral palsy and highlight potential target areas for rehabilitation for populations such as adolescent athletes.

9.
PLoS One ; 18(9): e0291408, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37725613

RESUMO

INTRODUCTION: Developmental disabilities and neuromotor delay adversely affect long-term neuromuscular function and quality of life. Current evidence suggests that early therapeutic intervention reduces the severity of motor delay by harnessing neuroplastic potential during infancy. To date, most early therapeutic intervention trials are of limited duration and do not begin soon after birth and thus do not take full advantage of early neuroplasticity. The Corbett Ryan-Northwestern-Shirley Ryan AbilityLab-Lurie Children's Infant Early Detection, Intervention and Prevention Project (Project Corbett Ryan) is a multi-site longitudinal randomized controlled trial to evaluate the efficacy of an evidence-based physical therapy intervention initiated in the neonatal intensive care unit (NICU) and continuing to 12 months of age (corrected when applicable). The study integrates five key principles: active learning, environmental enrichment, caregiver engagement, a strengths-based approach, and high dosage (ClinicalTrials.gov identifier NCT05568264). METHODS: We will recruit 192 infants at risk for neuromotor delay who were admitted to the NICU. Infants will be randomized to either a standard-of-care group or an intervention group; infants in both groups will have access to standard-of-care services. The intervention is initiated in the NICU and continues in the infant's home until 12 months of age. Participants will receive twice-weekly physical therapy sessions and caregiver-guided daily activities, assigned by the therapist, targeting collaboratively identified goals. We will use various standardized clinical assessments (General Movement Assessment; Bayley Scales of Infant and Toddler Development, 4th Edition (Bayley-4); Test of Infant Motor Performance; Pediatric Quality of Life Inventory Family Impact Module; Alberta Infant Motor Scale; Neurological, Sensory, Motor, Developmental Assessment; Hammersmith Infant Neurological Examination) as well as novel technology-based tools (wearable sensors, video-based pose estimation) to evaluate neuromotor status and development throughout the course of the study. The primary outcome is the Bayley-4 motor score at 12 months; we will compare scores in infants receiving the intervention vs. standard-of-care therapy.


Assuntos
Unidades de Terapia Intensiva Neonatal , Qualidade de Vida , Recém-Nascido , Criança , Humanos , Lactente , Modalidades de Fisioterapia , Alberta , Pessoal Técnico de Saúde , Ensaios Clínicos Controlados Aleatórios como Assunto
10.
Behav Sci (Basel) ; 13(7)2023 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-37503986

RESUMO

Physical activity of a sufficient amount and intensity is essential to health and the prevention of a sedentary lifestyle in all children as they transition into adolescence and adulthood. While fostering a fit lifestyle in all children can be challenging, it may be even more so for those with cerebral palsy (CP). Evidence suggests that bone and muscle health can improve with targeted exercise programs for children with CP. Yet, it is not clear how musculoskeletal improvements are sustained into adulthood. In this perspective, we introduce key ingredients and guidelines to promote bone and muscle health in ambulatory children with CP (GMFCS I-III), which could lay the foundation for sustained fitness and musculoskeletal health as they transition from childhood to adolescence and adulthood. First, one must consider crucial characteristics of the skeletal and muscular systems as well as key factors to augment bone and muscle integrity. Second, to build a better foundation, we must consider critical time periods and essential ingredients for programming. Finally, to foster the sustainability of a fit lifestyle, we must encourage commitment and self-initiated action while ensuring the attainment of skill acquisition and function. Thus, the overall objective of this perspective paper is to guide exercise programming and community implementation to truly alter lifelong fitness in persons with CP.

11.
Behav Sci (Basel) ; 13(6)2023 Jun 15.
Artigo em Inglês | MEDLINE | ID: mdl-37366756

RESUMO

Physical activity of at least moderate intensity in all children contributes to higher levels of physical and psychological health. While essential, children with cerebral palsy (CP) often lack the physical capacity, resources, and knowledge to engage in physical activity at a sufficient intensity to optimize health and well-being. Low levels of physical activity place them at risk for declining fitness and health, contributing to a sedentary lifestyle. From this perspective, we describe a framework to foster a lifelong trajectory of fitness in ambulatory children with CP (GMFCS I-III) as they progress into adolescence and adulthood, implemented in conjunction with a training program to augment bone and muscle health. First, we recommend that altering the fitness trajectory of children with CP will require the use of methods to drive behavioral change prior to adolescence. Second, to promote behavior change, we suggest embedding lifestyle intervention into fitness programming while including meaningful activities and peer socialization to foster self-directed habit formation. If the inclusion of lifestyle intervention to drive behavior change is embedded into fitness programs and found to be effective, it may guide the delivery of targeted programming and community implementation. Participation in comprehensive programming could alter the long-term trajectory of musculoskeletal health while fostering strong self-efficacy in persons with CP.

12.
Top Stroke Rehabil ; 30(2): 137-145, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36744516

RESUMO

BACKGROUND: Stroke often leads to chronic motor impairments in the paretic lower limb that can constrain lower extremity movement and negatively impact the ability to navigate stairs or curbs. This cross-sectional study investigated the differences in hip and knee biomechanical strategies during a step-up task between five adults with hemiparetic stroke and five age-matched adults without stroke. METHODS: Participants were instructed to step up onto a 10.2 cm platform, where joint biomechanics were quantified for the hip in the frontal plane and the hip and knee in the sagittal plane. Peak joint kinematics were identified during the leading limb swing phase, and peak joint moments and power were identified during the leading limb pull-up phase of stance. Mixed effects regression models estimated fixed effects of limb (three levels: control dominant, stroke non-paretic, and stroke paretic) on biomechanical outcomes, while a random effect of participant controlled for within-participant correlations. RESULTS: Repeated assessments within participants (approximately 60 trials per lower limb) increased the effective sample size to between 12.0 and 19.6. Altered biomechanical strategies of the paretic lower limb included reduced flexion angles and increased pelvic obliquity angles during swing, decreased power generation in the hip frontal plane during stance, and decreased moment and power generation in the knee sagittal plane during stance. A strategy of substantial interest was the elevated hip sagittal plane moment and power generation in both stroke limbs. CONCLUSIONS: Our findings suggest that chronic motor impairments following stroke can lead to inefficient biomechanical strategies when stepping up.


Assuntos
Acidente Vascular Cerebral , Adulto , Humanos , Estudos Transversais , Acidente Vascular Cerebral/complicações , Extremidade Inferior , Articulação do Joelho , Tornozelo , Fenômenos Biomecânicos , Marcha
13.
Early Hum Dev ; 174: 105684, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36209602

RESUMO

BACKGROUND: The Motor Optimality Score-Revised (MOS-R) is a detailed scoring of the General Movement Assessment (GMA), measuring the spontaneous behaviors of infants. Infants born moderate-late preterm are not traditionally followed in high-risk clinics, but have increased risk of neurodevelopmental disability. AIMS: Compare MOS-R at 3 months corrected age (CA) in high-risk (HR; very preterm or abnormal neuroimaging) infants to infants born moderate-late preterm (MLP). STUDY DESIGN: In this prospective cohort study, parents of enrolled infants created video recordings using an app at 3 months CA. Videos were scored with the General Movement Assessment (GMA) and MOS-R. MOS-R scores were divided into "higher-risk" (≤19) and "lower-risk" (≥20). SUBJECTS: 181 infants born MLP or categorized as HR. RESULTS: Among enrolled infants, 68 (38 %) were in the MLP group, and 113 infants were in the HR group. The HR group had 3.8 increased odds of having an aberrant GMA score compared to the MLP group (p < 0.01, 95 % CI 1.38-10.52). The HR group had significantly lower MOS-R scores (mean 20) than the MLP group (mean 24; p < 0.001; 95%CI 3.3-7.3). The HR group had 11.2 increased odds of having a higher-risk MOS-R score (95%CI 2.5-47.6, p < 0.001) than MLP group. Infants were most likely to have a lower MOS-R score if they had any of the following: VP shunt placement, periventricular leukomalacia, or bronchopulmonary dysplasia. CONCLUSIONS: Aberrant GMA and higher-risk MOS-R scores were more common in infants at high-risk, reflecting history of brain lesions and younger gestational age at birth.


Assuntos
Movimento , Parto , Lactente , Recém-Nascido , Gravidez , Feminino , Humanos , Estudos Prospectivos , Idade Gestacional , Gravação em Vídeo
15.
Pediatr Phys Ther ; 34(3): 411-417, 2022 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-35653258

RESUMO

PURPOSE: The purpose of this executive summary is to review the process and outcomes of the Academy of Pediatric Physical Therapy Research Summit V, "Optimizing transitions from infancy to young adulthood in children with neuromotor disabilities: biological and environmental factors to support functional independence." SUMMARY OF KEY POINTS: An interdisciplinary group of researchers, representatives from funding agencies, and individuals with neuromotor disabilities and their parents participated in an intensive 2.5-day summit to determine research priorities to optimize life transitions for children with neuromotor disabilities. Recommended priorities for research included (1) promoting self-determination and self-efficacy of individuals with neuromotor disabilities and their families, (2) best care at the right time: evidence-based best practice care, led and navigated by families seamlessly across the lifespan, (3) strengthening connections between developmental domains to enhance function and participation, and (4) optimal dosing and timing to support adaptive bone, muscle, and brain plasticity across the lifespan.


Assuntos
Pessoas com Deficiência , Pais , Adulto , Criança , Humanos , Modalidades de Fisioterapia , Autoeficácia , Adulto Jovem
16.
Front Sports Act Living ; 4: 830492, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35356095

RESUMO

Children and adolescents with movement challenges have lower instances of physical activity and longer time spent in sedentary behaviors compared to children with typical development. The purpose of this study was to investigate the feasibility of a sport-based youth development running program modified for accessibility using a running frame and to evaluate initial evidence for its efficacy on endurance and functional strength. We completed four 8-week seasons (2-3 times per week) in a combination of 3 different formats by season: online remote (winter and spring), in person in a community park (winter, spring, and summer), and in person in an afterschool setting (autumn). Participants included 13 athletes (average age 14.46 years, range 8-18 years, 4 females), who collectively completed 22 season blocks. Diagnoses included cerebral palsy (n = 10), arthrogryposis (n = 1), Dandy-Walker malformation (n = 1), and transverse myelitis (n = 1). In all settings, participants engaged in activities of social emotional learning, cardiovascular endurance, and muscle strengthening in a progressive manner. We found that each season format was feasible to administer with high attendance rates (76-97%) and positive qualitative feedback from athletes. In addition, promising average improvements in motor performance across a season (6 min frame running test, 170 m; timed up and go test, 8.44 s; five times sit to stand, 14.1 s; and Goal Attainment Scale, t = 65.01) were identified in the pilot data of this non-randomized cohort. Training in any of the proposed settings with an overall goal of completing a community race in a running frame is feasible and warrants further study.

17.
PLoS One ; 17(1): e0262153, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35081120

RESUMO

OBJECTIVE(S): Our objective was to investigate the motivators and barriers associated with the individual or family decision to participate in cerebral palsy research. Based on this information, we offer suggestions to increase the likelihood of participation in future CP studies. METHODS: A digital survey was administered to stakeholders affected by cerebral palsy across the US. Our analysis focused on variables related to personal interests, travel, and study-specific elements. Statistical tests investigated the effects of responder type, cerebral palsy type, and Gross Motor Function Classification System level on travel and study-specific element variables. Recommendations were informed by responses reflecting the majority of respondents. RESULTS: Based on 233 responses, we found that respondents highly valued research participation (on average 88.2/100) and compensation (on average 62.3/100). Motivators included the potential for direct benefit (62.2%) and helping others (53.4%). The primary barriers to participation were schedule limitations (48.9%) and travel logistics (32.6%). Schedule limitations were especially pertinent to caregivers, while individuals with more severe cerebral palsy diagnoses reported the necessity of additional items to comfortably travel. CONCLUSIONS: Overall, we encourage the involvement of stakeholders affected by cerebral palsy in the research process. Researchers should consider offering flexible study times, accommodating locations, and compensation for time and travel expenses. We recommend a minimum compensation of $15/hour and a maximum time commitment of 4 hours/day to respect participants' time and increase likelihood of research participation. Future studies should track how attitudes toward research change with time and experience.


Assuntos
Cuidadores/psicologia , Paralisia Cerebral/psicologia , Pesquisa , Paralisia Cerebral/patologia , Paralisia Cerebral/terapia , Feminino , Humanos , Masculino , Motivação , Pesquisa/economia , Índice de Gravidade de Doença , Inquéritos e Questionários
18.
Front Neurosci ; 15: 666697, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34393702

RESUMO

Tasks of daily life require the independent use of the arms and hands. Individuals with hemiparetic cerebral palsy (HCP) often experience difficulty with fine motor tasks demonstrating mirrored movements between the arms. In this study, bilateral muscle activations were quantified during single arm isometric maximum efforts and submaximal reaching tasks. The magnitude and direction of mirrored activation was examined in 14 individuals with HCP and 9 age-matched controls. Participants generated maximum voluntary torques (MVTs) in five different directions and completed ballistic reaches while producing up to 80% of shoulder abduction MVT. Electromyography (EMG) signals were recorded from six upper extremity muscles bilaterally. Participants with HCP demonstrated more mirrored activation when volitionally contracting the non-paretic (NP) arm than the paretic arm (F = 83.543, p < 0.001) in isometric efforts. Increased EMG activation during reach acceleration resulted in a larger increase in rest arm co-activation when reaching with the NP arm compared to the paretic arm in the HCP group (t = 8.425, p < 0.001). Mirrored activation is more pronounced when driving the NP arm and scales with effort level. This directionality of mirroring is indicative of the use of ipsilaterally terminating projections of the corticospinal tract (CST) originating in the non-lesioned hemisphere. Peripheral measures of muscle activation provide insight into the descending pathways available for control of the upper extremity after early unilateral brain injury.

19.
Am J Phys Med Rehabil ; 100(9): 821-830, 2021 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-34091465

RESUMO

OBJECTIVES: The aim of this study was to determine the impact of the COVID-19 pandemic on access to rehabilitation therapies and the impact of changes in therapy access on the physical and mental well-being of children with motor impairment and their caregivers. DESIGN: Caregivers of children younger than 18 yrs with childhood-onset motor impairment (primarily cerebral palsy) completed an anonymous survey through the online platform REDCap between May 5 and July 13, 2020. RESULTS: The survey was completed by 102 participants. Before the pandemic, 92 of 102 children (90%) were receiving one or more therapies; at the time surveyed, 55 children (54%) were receiving any therapies (P < 0.001). More than 40% of the sample reported increased child stress, decreased physical activity, and/or decline in mobility/movement. Participants who reported a decrease in number of therapies at the time surveyed more frequently reported lower satisfaction with treatment delivery (P < 0.001), a decline in child's mobility (P = 0.001), and increased caregiver stress (P = 0.004). Five qualitative themes were identified from open-ended question responses related to therapies and well-being. CONCLUSIONS: Access to pediatric rehabilitation therapies was disrupted during COVID-19. Disrupted access may be related to impact on physical and mental health. With the expansion of telehealth, caregiver and child feedback should be incorporated to optimize benefit.


Assuntos
COVID-19 , Paralisia Cerebral/reabilitação , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Transtornos dos Movimentos/reabilitação , Quarentena/psicologia , Adolescente , Adulto , Sobrecarga do Cuidador/epidemiologia , Cuidadores/psicologia , Paralisia Cerebral/psicologia , Criança , Continuidade da Assistência ao Paciente/estatística & dados numéricos , Feminino , Humanos , Masculino , Limitação da Mobilidade , Transtornos dos Movimentos/psicologia , Pesquisa Qualitativa , SARS-CoV-2 , Estresse Psicológico/epidemiologia , Estresse Psicológico/etiologia , Inquéritos e Questionários
20.
Arch Phys Med Rehabil ; 102(8): 1547-1555, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33713698

RESUMO

OBJECTIVE: To investigate the effect of the coronavirus disease 2019 (COVID-19) pandemic on perspectives toward participation in cerebral palsy (CP) research. DESIGN: An online survey with questions relating to the comfort levels of research participation was filled out by people who had CP or had a child with CP. SETTING: The online survey was administered through Research Electronic Data Capture platform. PARTICIPANTS: A total of 233 (n=233) individuals with CP (42.5%; n=99) or with a child with CP (57.1%; n=133) consented and at least partially completed the online survey (n=210 complete; n=23 partially complete). All participants resided in the United States. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Readiness to participate was analyzed in the context of the time point for research participation during COVID-19 and whether or not the study offered direct benefits to participants. RESULTS: Participants were consistently willing to participate sooner in studies that offered direct benefit than in those that did not. Adults responding for themselves had sooner time points for studies without direct benefit compared with parents answering for a child (P=.030). Gross Motor Function Classification System level, but not age or CP type, affected the time point for studies without direct benefit (P=.017). Personal values influenced selected time point for studies without direct benefit (P=.007), whereas environmental factors affected the time point for studies with direct benefit (P=.002). Local COVID-19 incidence rates were not associated with time points for either research type; however, respondents expected precautions to be taken if they chose to participate. CONCLUSIONS: As the pandemic evolves, researchers should consider the perspectives of potential participants as well as ethical and safety factors when reinitiating in-person CP research.


Assuntos
COVID-19/epidemiologia , Paralisia Cerebral/terapia , Experimentação Humana , Projetos de Pesquisa , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Pandemias , SARS-CoV-2 , Participação dos Interessados , Inquéritos e Questionários , Estados Unidos/epidemiologia , Adulto Jovem
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