United Cerebral Palsy

Disability affects ~15.7 million children and ~67 million adults in the US, yet these individuals are typically under-represented in clinical research. Clinical research has increasingly broadened its focus on health outcomes to include "positive health," which reflects the capacity of an individual to adapt to challenges and the absence of disease. A mixed-methods approach is used to investigate disability community perspectives on research inclusion and the use of positive health as an outcome in the context of childhood-onset disability. Nationally, about one-fourth (1/4) of adults with disabilities and parents/caregivers reported participating in non-disability-specific research; overall, ~23% of adults and ~30% of parents/caregivers report exclusion because of disability, despite >80% endorsing health outcomes research. Disability stakeholders unanimously express the need to reframe positive health in a disability context, provide guidance on how to reframe it as a research outcome, and offer a roadmap for improving research inclusion. A paradigm shift in how positive health is framed may enhance its relevance to disabilities. An action plan for researchers is derived as a pragmatic approach to strengthen the relevance, generalizability and impact of their research.

'Cerebral palsy' ('CP') is a widely used descriptive label for a spectrum of motor impairments caused by non-progressive brain injury or malformation occurring during early development. Advances in research have significantly refined our understanding of CP, including insights into its genetic, inflammatory, and neurophysiological underpinnings. Research across global contexts, including low- and middle-income countries, has expanded knowledge of clinical features. Shifting societal perceptions, driven by individuals with lived experience, have further influenced how CP is understood, challenging ableist attitudes and promoting inclusive frameworks. Additionally, increased recognition of the needs and experiences of adults with CP has highlighted the importance of further developing appropriate services. The primary aim of this paper is to propose an updated description of CP, developed through a collaborative, multidisciplinary process, as a preliminary formulation that integrates stakeholder perspectives at this stage of the process. By framing it as a foundation for further discussion and refinement, the manuscript emphasizes the output itself rather than the process of its development. A comprehensive stakeholder analysis and mapping approach ensured broad representation, including individuals with CP, families, clinicians, researchers, advocacy groups, and others. Data were collected through surveys, interviews, focus groups, and workshops, facilitating a global dialogue that combined the expertise of those with lived experience with that of clinicians. The description is intended to serve as a preliminary framework to guide clinical practice, research, and policy, emphasizing a shared understanding of CP. The proposed updated description thus lays the foundation for continued refinement, emphasizing the importance of collaboration in advancing the care and inclusion of individuals with CP.

Speech comprehension in noisy environments remains a significant challenge, even among individuals with clinically normal hearing and users of hearing aids and cochlear implants. While conventional assistive hearing devices address limitations in the auditory periphery, they do not directly enhance the brain’s capacity to segregate speech from background noise. Because tonic vagus nerve stimulation (VNS) has demonstrated potential for rapidly improving central sensory processing, this study investigated whether tonic transcutaneous cervical VNS (tcVNS) can augment speech-in-noise intelligibility.Two cohorts of older human adults (60–84 years) participated in a placebo-controlled, crossover study. Participants completed speech-in-noise assessments using either QuickSIN or AzBio sentences, while receiving tonic tcVNS to the neck, or placebo stimulation to the neck-shoulder junction. Speech-in-noise performance was assessed by measuring participants’ accuracy in repeating sentences presented at varying signal-to-noise ratios (SNR) within background babble.Tonic tcVNS improved speech-in-noise intelligibility compared to placebo. At the group-level, the SNR threshold for 50% speech intelligibility (SNR-50) improved by 0.76 dB in QuickSIN (p=0.016) and by 0.38 dB in AzBio (p=0.045). For individual participants, 50% demonstrated improvements that met a minimum clinically important difference (MCID) of 1 dB. Tonic tcVNS evoked progressively greater improvements as SNR increased in QuickSIN (p=0.021) and AzBio (p=0.00023), with the largest gains above 0 dB SNR. In 55% of participants, tcVNS improved intelligibility beyond an MCID benchmark of 4.9% at 5 dB SNR. While the magnitude of tcVNS-evoked improvements was inversely related to baseline speech-in-noise impairment (p=0.028), with the most impaired individuals demonstrating the largest gains, it did not correlate with hearing loss severity (p=0.97) or age (p=0.88).Our findings indicate that tonic tcVNS can evoke immediate and clinically meaningful enhancements in speech-in-noise comprehension. This suggests tcVNS may complement conventional assistive hearing technologies and inform novel therapies for sensory processing disorders.

Coxa valga, measured as the neck-shaft angle (NSA) or head-shaft angle (HSA), is regarded as a potential risk factor for hip dislocation in patients with cerebral palsy. We investigated the effects of a novel hip brace on coxa valga. A prospective, multicenter, assessor-blinded, randomized controlled trial was conducted from July 2019 to November 2021. Children with cerebral palsy aged 1 to 10 years with Gross Motor Function Classification System levels IV and V were recruited. The study group wore a hip brace for at least 12 hour a day. A lower strap of the hip brace was designed to prevent coxa valga biomechanically. The effectiveness of the hip brace on coxa valga was assessed by measurement of the NSA and head-shaft angle at enrollment and 6 and 12 months after enrollment. Sixty-six participants were enrolled, and 33 patients were assigned to each group. Changes in the mean NSA of both sides and the NSA of left side showed significant differences between the 2 groups over 12 months (mean NSA of both sides, -1.12 ± 3.64 in the study group and 1.43 ± 3.75 in the control group, P = .023; NSA of the left side, -1.72 ± 5.38 in the study group and 2.01 ± 5.22 in the control group, P = .008). The hip brace was effective in preventing the progression of coxa valga and hip displacement, suggesting that the prevention of coxa valga using hip brace is a contributing factor in prevention of hip displacement.

Although durable medical equipment and supplies (DMES) are commonly used to optimize the health and function in pediatric patients, little is known about the prevalence of use and spending on DMES. To categorize the Healthcare Common Procedure Coding System (HCPCS) for distinguishing DMES types, and to measure the prevalence and related spending of DMES in pediatric patients using Medicaid. This study is a cross-sectional analysis of the 2018 Merative Medicaid Database and included 4 569 473 pediatric patients aged 0 to 21 years enrolled in Medicaid in 12 US states from January 1 to December 31, 2018. Data were analyzed from February 2019 to April 2023. DMES exposure was identified with the Centers for Medicare & Medicaid Services HCPCS codes. Three pediatricians categorized HCPCS DMES codes submitted by vendors for reimbursement of dispensed DMES into DMES types and end-organ systems; 15 expert reviewers refined the categorization (2576 DMES codes, 164 DMES types, 14 organ systems). The main outcome was DMES prevalence & Medicaid spending. The χ2 test was used to compare DMES prevalence and Wilcoxon rank sum tests were used to compare per-member-per-year (PMPY) spending by complex chronic conditions (CCC). Of the 4 569 473 patients in the study cohort, 49.3% were female and 56.1% were aged 5 to 15 years. Patients used 133 of 164 (81.1%) DMES types. The DMES prevalence was 17.1% (95% CI, 17.0%-17.2%) ranging from 10.1% (95% CI, 10.0%-10.2%) in patients with no chronic condition to 60.9% (95% CI, 60.8%-61.0%) for patients with 2 or more CCCs. The PMPY DMES spending was $593, ranging from $349 for no chronic condition to $4253 for 2 or more CCCs. Lens (7.9%), vision frames (6.2%), and orthotics for orthopedic injury (0.8%) were the most common DME in patients with no chronic condition. Enteral tube / feeding supplies (19.8%), diapers (19.2%), lower extremity orthotics (12.3%), wheelchair (9.6%), oxygen (9.0%), and urinary catheter equipment (4.2%) were among the most common DMES in children with 2 or more CCCs. In this cross-sectional study, HCPCS distinguished a variety of DME types and use across pediatric populations. Further investigation should assess the utility of the HCPCS DMES categorization with efforts to optimize the quality and safety of DMES use.

Describe the development and application of a progressive resistance exercise (PRE) program for children with cerebral palsy (CP), which became a standard care model at an urban specialty hospital network. Muscle structure and performance have been shown to impact function and participation in children with CP. Use of PRE to achieve function and participation goals is supported by a growing body of evidence. A novel guideline, focused on individualized, goal-focused PRE dosing, professional development, program monitoring, and outcome measures use, facilitated application of a new clinical practice. Practice change was accomplished by translating evidence using a clinical guideline resulting in positive child function and participation outcomes. This Special Communication provides an example of addressing goal-related muscle performance impairments in children with CP. Clinicians should consider updating long-standing physical therapy intervention strategies by incorporating goal-specific PRE into practice.

HomeStrokeVol. 54, No. 4Red Blood Cell Microparticles Limit Hemorrhage Following Intracerebral Hemorrhage in Spontaneously Hypertensive Rats No AccessResearch ArticleRequest AccessFull TextAboutView Full TextView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissionsDownload Articles + Supplements ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toSupplemental MaterialNo AccessResearch ArticleRequest AccessFull TextRed Blood Cell Microparticles Limit Hemorrhage Following Intracerebral Hemorrhage in Spontaneously Hypertensive Rats Ashish K. Rehni, Sunjoo Cho, Hever Navarro Quero, Zhexuan Zhang, Chuanhui Dong, Weizhao Zhao, Miguel A. Perez-Pinzon, Sebastian Koch, Wenche Jy and Kunjan R. Dave Ashish K. RehniAshish K. Rehni https://orcid.org/0000-0002-9107-3277 Peritz Scheinberg Cerebral Vascular Disease Research Laboratories (A.K.R., S.C., M.A.P.-P., K.R.D.), University of Miami, Coral Gables, FL. Department of Neurology (A.K.R., S.C., C.D., M.A.P.-P., S.K., K.R.D.), University of Miami, Coral Gables, FL. *A.K. Rehni and S. Cho contributed equally. Search for more papers by this author , Sunjoo ChoSunjoo Cho Peritz Scheinberg Cerebral Vascular Disease Research Laboratories (A.K.R., S.C., M.A.P.-P., K.R.D.), University of Miami, Coral Gables, FL. Department of Neurology (A.K.R., S.C., C.D., M.A.P.-P., S.K., K.R.D.), University of Miami, Coral Gables, FL. *A.K. Rehni and S. Cho contributed equally. Search for more papers by this author , Hever Navarro QueroHever Navarro Quero Department of Medicine, University of Miami Miller School of Medicine (H.N.Q., W.J.), University of Miami, Coral Gables, FL. Search for more papers by this author , Zhexuan ZhangZhexuan Zhang https://orcid.org/0000-0002-8149-9186 Department of Biomedical Engineering (Z.Z., W.Z.), University of Miami, Coral Gables, FL. Search for more papers by this author , Chuanhui DongChuanhui Dong Department of Neurology (A.K.R., S.C., C.D., M.A.P.-P., S.K., K.R.D.), University of Miami, Coral Gables, FL. Search for more papers by this author , Weizhao ZhaoWeizhao Zhao https://orcid.org/0000-0002-9890-5785 Department of Biomedical Engineering (Z.Z., W.Z.), University of Miami, Coral Gables, FL. Search for more papers by this author , Miguel A. Perez-PinzonMiguel A. Perez-Pinzon https://orcid.org/0000-0001-6555-8935 Peritz Scheinberg Cerebral Vascular Disease Research Laboratories (A.K.R., S.C., M.A.P.-P., K.R.D.), University of Miami, Coral Gables, FL. Department of Neurology (A.K.R., S.C., C.D., M.A.P.-P., S.K., K.R.D.), University of Miami, Coral Gables, FL. Neuroscience Program (M.A.P.-P., K.R.D.), University of Miami, Coral Gables, FL. Search for more papers by this author , Sebastian KochSebastian Koch https://orcid.org/0000-0003-0244-6033 Peritz Scheinberg Cerebral Vascular Disease Research Laboratories (A.K.R., S.C., M.A.P.-P., K.R.D.), University of Miami, Coral Gables, FL. Search for more papers by this author , Wenche JyWenche Jy Department of Medicine, University of Miami Miller School of Medicine (H.N.Q., W.J.), University of Miami, Coral Gables, FL. Search for more papers by this author and Kunjan R. DaveKunjan R. Dave Correspondence to: Kunjan R. Dave, PhD, Department of Neurology, University of Miami Miller School of Medicine, 1600 NW 10th Ave, RMSB No. 7046, Miami, FL 33136. Email E-mail Address: [email protected] https://orcid.org/0000-0002-0173-5338 Peritz Scheinberg Cerebral Vascular Disease Research Laboratories (A.K.R., S.C., M.A.P.-P., K.R.D.), University of Miami, Coral Gables, FL. Department of Neurology (A.K.R., S.C., C.D., M.A.P.-P., S.K., K.R.D.), University of Miami, Coral Gables, FL. Neuroscience Program (M.A.P.-P., K.R.D.), University of Miami, Coral Gables, FL. Search for more papers by this author Originally published2 Mar 2023https://doi.org/10.1161/STROKEAHA.122.042152Stroke. 2023;54:e152–e154Footnotes*A.K. Rehni and S. Cho contributed equally.This manuscript was sent to Jean-Claude Baron, Guest Editor, for review by expert referees, editorial decision, and final disposition.For Sources of Funding and Disclosures, see page e154.Supplemental Material is available at https://www.ahajournals.org/doi/suppl/10.1161/STROKEAHA.122.042152.Correspondence to: Kunjan R. Dave, PhD, Department of Neurology, University of Miami Miller School of Medicine, 1600 NW 10th Ave, RMSB No. 7046, Miami, FL 33136. Email [email protected]miami.edu