The Post-Concussion Symptom Scale: Normative Data for Adolescent Student-Athletes Stratified by Gender and Preexisting Conditions.

BACKGROUND: The Post-Concussion Symptom Scale (PCSS) is a self-report questionnaire measuring symptoms that commonly occur after a concussion; however, these symptoms are nonspecific and can be related to co-occurring orthopaedic injuries (eg, cervical strain) or patient characteristics and preexisting conditions, even in the absence of a recent injury. As such, clinicians may have difficulty determining whether symptom elevations are attributable to a recent concussion as opposed to a confounding injury or a preexisting condition, which may be especially difficult when preinjury baseline symptom data are unavailable. PURPOSE: This study aimed to further validate the 4-factor model of the PCSS (ie, cognitive, sleep-arousal, physical, and affective symptoms) with adolescent student-athletes and provide normative reference data for each factor and the total score, stratified by gender and preexisting health conditions. STUDY DESIGN: Cross-sectional study; Level of evidence, 3. METHODS: Participants were 9358 adolescent student-athletes who completed the PCSS during a preseason baseline evaluation (mean age, 14.9 years; SD, 1.3 years [range, 13-18 years]; 49.3% boys). The 4-factor model of the PCSS was tested for the full sample and separately for boys and girls using confirmatory factor analysis. Symptom severity percentiles were created for the PCSS total score and each factor, stratified by gender and preexisting conditions (ie, attention-deficit/hyperactivity disorder, mental health history, headache/migraine history, learning disability/dyslexia, academic problems, and concussion history). RESULTS: The 4-factor model of the PCSS replicated in the full sample (comparative fit index [CFI] = 0.959) and in both gender groups (boys: CFI = 0.961; girls: CFI = 0.960). The total PCSS score at the 84th percentile varied by preexisting conditions as follows: healthy participants = 8, attention-deficit/hyperactivity disorder = 18, mental health history = 26, headache/migraine history = 18, learning disability = 19, and academic problems = 17. On all PCSS subscales, participants with a mental health history had the highest scores, and high scores were associated with having >1 preexisting condition. Girls had higher scores than boys for each stratification. CONCLUSION: The 4-factor model of the PCSS replicates for adolescent student-athletes. Gender, number of preexisting conditions, and mental health history are important factors to account for when interpreting PCSS symptom severity. The normative data provided herein could assist clinicians in determining whether an adolescent student-athlete is presenting with persistent postconcussion symptoms or a typical symptom experience based on their gender and personal health history.

Neurodevelopmental Disorders and Risk of Concussion: Findings from the National Collegiate Athletic Association Department of Defense Grand Alliance Concussion Assessment, Research, and Education (NCAA-DOD CARE) Consortium (2014-2017).

Evidence suggests neurodevelopmental disorders (NDs) may be associated with an increased incidence of concussion, but no studies have cross-sectionally and longitudinally assessed the associations of NDs and sex with concussion in collegiate athletes. We sought to assess the odds and relative risk (RR) of concussion in athletes self-reporting a diagnosis of attention deficit/hyperactivity disorder (ADHD), learning disability (LD), and ADHD+LD. Data from the Concussion Assessment, Research and Education (CARE) Consortium (2014-2017) were used to evaluate the likelihood of concussion for male and female athletes with ADHD, LD, and ADHD+LD, relative to controls. Odds ratios (ORs) of concussion history prior to enrollment and relative risk ratios for incurring a concussion following enrollment, with and without concussion history were calculated for all groups. Athletes with self-reported diagnosis of ADHD, LD, and ADHD+LD were more likely to report a single concussion (OR range = 1.528 to 1.828) and multiple concussions (OR range = 1.849 to 2.365) prior to enrollment in the CARE Consortium, irrespective of sex compared with control athletes. While enrolled in CARE, male athletes with ADHD, LD, and ADHD+LD had greater risk of incurring a concussion (RR range = 1.369 to 2.243) than controls, irrespective of concussion history. Male athletes with ADHD+LD with concussion history (RR = 2.221) and without concussion history (RR = 1.835) had greater risk of incurring a concussion than controls. These results suggest NDs may be associated with increased odds of single and multiple concussions, irrespective of sex. However, when we accounted for concussion history, it appears only male athletes with ADHD+LD had greater risk than respective controls. There were no significant differences between females and males with ADHD, LD, or ADHD+LD for either odds of concussion history or risk for incurring concussion.

Early Child Development and Nutrition: A Review of the Benefits and Challenges of Implementing Integrated Interventions.

Poor nutrition (substandard diet quantity and/or quality resulting in under- or overnutrition) and the lack of early learning opportunities contribute to the loss of developmental potential and life-long health and economic disparities among millions of children aged <5 y. Single-sector interventions representing either early child development (ECD) or nutrition have been linked to positive child development and/or nutritional status, and recommendations currently advocate for the development and testing of integrated interventions. We reviewed the theoretical and practical benefits and challenges of implementing integrated nutrition and ECD interventions along with the evidence for best practice and benefit-cost and concluded that the strong theoretical rationale for integration is more nuanced than the questions that the published empirical evidence have addressed. For example, further research is needed to 1) answer questions related to how integrated messaging influences caregiver characteristics such as well-being, knowledge, and behavior and how these influence early child nutrition and development outcomes; 2) understand population and nutritional contexts in which integrated interventions are beneficial; and 3) explore how varying implementation processes influence the efficacy, uptake, and cost-benefit of integrated nutrition and ECD interventions.

Wordless intervention for people with epilepsy and learning disabilities (WIELD): a randomised controlled feasibility trial.

OBJECTIVE: To investigate the feasibility of a full-scale randomised controlled trial of a picture booklet to improve quality of life for people with epilepsy and learning disabilities. TRIAL DESIGN: A randomised controlled feasibility trial. Randomisation was not blinded and was conducted using a centralised secure database and a blocked 1:1 allocation ratio. SETTING: Epilepsy clinics in 1 English National Health Service (NHS) Trust. PARTICIPANTS: Patients with learning disabilities and epilepsy who had: a seizure within the past 12 months, meaningful communication and a carer with sufficient proficiency in English. INTERVENTION: Participants in the intervention group used a picture booklet with a trained researcher, and a carer present. These participants kept the booklet, and were asked to use it at least twice more over 20 weeks. The control group received treatment as usual, and were provided with a booklet at the end of the study. OUTCOME MEASURES: 7 feasibility criteria were used relating to recruitment, data collection, attrition, potential effect on epilepsy-related quality of life (Epilepsy and Learning Disabilities Quality of Life Scale, ELDQOL) at 4-week, 12-week and 20-week follow-ups, feasibility of methodology, acceptability of the intervention and potential to calculate cost-effectiveness. OUTCOME: The recruitment rate of eligible patients was 34% and the target of 40 participants was reached. There was minimal missing data and attrition. An intention-to-treat analysis was performed; data from the outcome measures suggest a benefit from the intervention on the ELDQOL behaviour and mood subscales at 4 and 20 weeks follow-up. The booklet and study methods were positively received, and no adverse events were reported. There was a positive indication of the potential for a cost-effectiveness analysis. CONCLUSIONS: All feasibility criteria were fully or partially met, therefore confirming feasibility of a definitive trial. TRIAL REGISTRATION NUMBER: ISRCTN80067039.

School Competence and Fluent Academic Performance: Informing Assessment of Educational Outcomes in Survivors of Pediatric Medulloblastoma.

Academic difficulties are widely acknowledged but not adequately studied in survivors of pediatric medulloblastoma. Although most survivors require special education services and are significantly less likely than healthy peers to finish high school, measured academic skills are typically average. This study sought to identify potential factors associated with academic difficulties in this population and focused on school competence and fluent academic performance. Thirty-six patients (ages 7-18 years old) were recruited through the Departments of Neurosurgery and Neuro-Oncology at Children's Medical Center Dallas and Cook Children's Medical Center in Fort Worth, TX. Participants completed a neuropsychological screening battery including selected Woodcock-Johnson III Tests of Achievement subtests. Parents completed the Child Behavior Checklist. School competence was significantly correlated with measured academic skills and fluency. Basic academic skill development was broadly average, in contrast to significantly worse fluent academic performance. School competence may have utility as a measure estimating levels of educational success in this population. Additionally, academic difficulties experienced by childhood medulloblastoma survivors may be better captured by measuring deficits in fluent academic performance rather than skills. Identification of these potential factors associated with educational outcomes of pediatric medulloblastoma survivors has significant implications for research, clinical assessment, and academic services/interventions.

Learning disabilities: reducing inequalities.

This article introduces five small changes that nurses who do not usually work in the field of learning disabilities can make to improve healthcare and reduce avoidable, premature deaths of people with learning disabilities. The changes are small, cost little and enable nurses to creatively meet the needs of their patients.

[People with learning disabilities: an overview of the facts]. / Mensen met een verstandelijke beperking: de feiten op een rij.

This article gives a short overview of some basic facts about people with learning disabilities. The prevalence (1-3% worldwide) and stability of the incidence are described, as well as the causes and possible medical comorbidities.- People with learning disabilities are at significantly greater risk of developing cognitive and medical problems compared with the average population. Lastly, an overview of actual chronic care costs is given, as well as actual participation possibilities for people with learning disabilities.

Injuries among children with autism spectrum disorder.

OBJECTIVE: We compared risk of injury among children with autism spectrum disorder (ASD) to those without ASD, adjusting for demographic and clinical characteristics. METHODS: We used claims data from 2001 to 2009 from a commercial health plan in the United States. A validated ASD case identification algorithm identified 33,565 children (ages 0-20 years) with ASD and 138,876 children without. Counting process models tested the association between ASD status and injury episodes with separate regressions run for children during different age periods. RESULTS: Unadjusted results demonstrated that children with ASD had a 12% greater injury risk than children without ASD (hazard ratio [HR] = 1.119; P < .001). After including demographic variables, the HR was 1.03 (P < .05); after controlling for co-occurring conditions, such as seizures, depression, etc, HR decreased to 0.889 (P < .001). For the age period analysis, HR values were as follows: for 0 to 2 years, HR 1.141; 3 to 5 years, HR 1.282; 6 to 10 years, HR not significant; and 11 to 20 years, HR 0.634 (P < .05 for all significant results). CONCLUSIONS: Children with ASD have more injuries than children without ASD. After controlling for demographic factors and co-occurring conditions, children with ASD are at lower risk of injury, suggesting that co-occurring conditions or the ways these conditions interact with ASD is related to injuries. Clinicians should understand that injury risk in children with ASD may be driven by co-occurring conditions. Treating these conditions could thus decrease injury risk as well as have other benefits. Injury prevention interventions are especially warranted for younger children with ASD and those with seizures, depression, visual impairment, or attention-deficit disorders.

Inequalities in the care experiences of patients with cancer: analysis of data from the National Cancer Patient Experience Survey 2011-2012.

OBJECTIVES: To explore inequalities in the care experiences of of patients with cancer by patient, clinical and trust-level factors [corrected]. DESIGN: Secondary analysis of data from the National Cancer Patient Experience Survey 2011-2012. SETTING AND PARTICIPANTS: Adult patients with a primary diagnosis of cancer who attended an acute or specialist National Health Service (NHS) trust in England. OUTCOME MEASURE: OR of a patient rating their overall care positively, adjusting for other patient, clinical and trust-level factors. METHODS: Using cross-sectional data from 71 793 patients with cancer who completed the National Cancer Patient Experience Survey 2011-2012, we examined associations between patient, clinical and trust-level factors and a summary measure of patient experience, namely overall rating of care. Multivariate logistic regression was used to investigate variation by sociodemographic characteristics adjusting for other patient, clinical and trust-level factors. RESULTS: Female, non-white and younger patients were less likely to rate their overall care as excellent or very good. Patients with long-standing conditions, particularly those with learning disabilities or mental health conditions, also reported poorer overall care. This variation persisted when other patient, clinical and trust-level factors were controlled for, indicating that there are real differences in experiences among patients with cancer by sociodemographic characteristics. CONCLUSIONS: There is evidence of inequalities in the experiences of patients with cancer in the UK by sociodemographic characteristics such as gender, age, ethnicity and disability. Quality cancer care services must strive to meet the needs of a diverse patient population equally; this study identifies patient groups for whom it appears cancer care services are in greatest need of improvement.

Piloting a manualised weight management programme (Shape Up-LD) for overweight and obese persons with mild-moderate learning disabilities: study protocol for a pilot randomised controlled trial.

BACKGROUND: National obesity rates have dramatically risen over the last decade. Being obese significantly reduces life expectancy, increases the risk of a range of diseases, and compromises quality of life. Costs to both the National Health Service and society are high. An increased prevalence of obesity in people with learning disabilities has been demonstrated. The consequences of obesity are particularly relevant to people with learning disabilities who are already confronted by health and social inequalities. In order to provide healthcare for all, and ensure equality of treatment for people with learning disabilities, services must be developed specifically with this population in mind. The aim of this project is to pilot the evaluation of a manualised weight management programme for overweight and obese persons with mild-moderate learning disabilities (Shape Up-LD). METHODS/DESIGN: An individually randomised, controlled pilot trial in 60 overweight and obese (body mass index ≥ 25) adults (age ≥ 18) with mild-moderate learning disabilities and their carers will be carried out, comparing "Shape Up-LD" with usual care. The manualised Shape Up-LD intervention will involve 12 weekly sessions, which include healthy eating messages, advice on physical activity and use of behaviour change techniques to help people manage their weight. Assessments of participants will be conducted at baseline, 12 weeks and 6 months. Service users and their carers and service providers will also give their perspectives on the experience of Shape Up-LD in qualitative interviews at 12 weeks. Feasibility outcomes will include recruitment rates, loss to follow-up, compliance rates, completion rates, collection of information for a cost-effectiveness analysis and an estimation of the treatment effect on weight. DISCUSSION: The findings from this study will inform our preparation for a definitive randomised controlled trial to test the efficacy of the programme with respect to weight loss and maintenance in this population. Weight loss through Shape Up-LD could lead to improvements in health and quality of life. Costs to the National Health Service might be reduced through decreased overall service use because of improved health. The programme would also ensure a more equitable service for overweight service users with learning disabilities and fill the current gap in weight management services for this population. TRIAL REGISTRATION: International Standard Randomised Controlled Trial No ISRCTN39605930.

Access to cancer screening in people with learning disabilities in the UK: cohort study in the health improvement network, a primary care research database.

OBJECTIVES: To assess whether people with learning disability in the UK have poorer access to cancer screening. DESIGN: Four cohort studies comparing people with and without learning disability, within the recommended age ranges for cancer screening in the UK. We used Poisson regression to determine relative incidence rates of cancer screening. SETTING: The Health Improvement Network, a UK primary care database with over 450 General practices. PARTICIPANTS: Individuals with a recorded diagnosis of learning disability including general diagnostic terms, specific syndromes, chromosomal abnormalities and autism in their General Practitioner computerised notes. For each type of cancer screening, a comparison cohort of up to six people without learning disability was selected for each person with a learning disability, using stratified sampling on age within GP practice. MAIN OUTCOME MEASURES: Incidence rate ratios for receiving 1) a cervical smear test, 2) a mammogram, 3) a faecal occult blood test and 4) a prostate specific antigen test. RESULTS: Relative rates of screening for all four cancers were significantly lower for people with learning disability. The adjusted incidence rate ratios (95% confidence intervals) were Cervical smears: Number eligible with learning disability = 6,254; IRR = 0.54 (0.52-0.56). Mammograms: Number eligible with learning disability = 2,956; IRR = 0.76 (0.72-0.81); Prostate Specific Antigen: Number eligible = 3,520; IRR = 0.87 (0.80-0.96) and Faecal Occult Blood Number eligible = 6,566; 0.86 (0.78-0.94). Differences in screening rates were less pronounced in more socially deprived areas. Disparities in cervical screening rates narrowed over time, but were 45% lower in 2008/9, those for breast cancer screening appeared to widen and were 35% lower in 2009. CONCLUSION: Despite recent incentives, people with learning disability in the UK are significantly less likely to receive screening tests for cancer that those without learning disability. Other methods for reducing inequalities in access to cancer screening should be considered.

School outcomes of children with special health care needs.

OBJECTIVE: To examine the associations between having a special health care need and school outcomes measured as attendance, student engagement, behavioral threats to achievement, and academic achievement. PARTICIPANTS AND METHODS: A total of 1457 children in the fourth through sixth grades from 34 schools in 3 school districts and their parents provided survey data; parents completed the Children With Special Health Care Needs Screener. School records were abstracted for attendance, grades, and standardized achievement test scores. RESULTS: Across 34 schools, 33% of children screened positive for special health care needs. After adjusting for sociodemographic and school effects, children with special health care needs had lower motivation to do well in school, more disruptive behaviors, and more frequent experiences as a bully victim. They experienced significantly lower academic achievement, as measured by grades, standardized testing, and parental-assessed academic performance. These findings were observed for children who qualified as having a special health care need because they had functional limitations attributed to a chronic illness or a behavioral health problem but not for those who qualified only because they took prescription medications. CONCLUSIONS: Specific subgroups of children with special health care needs are at increased risk for poor school outcomes. Health and school professionals will need to collaborate to identify these children early, intervene with appropriate medical and educational services, and monitor long-term outcomes.

The prevalence and management of epilepsy in secondary school pupils with and without special educational needs.

OBJECTIVES: The objectives of this paper were to (i) determine the prevalence of epilepsy (including the various epilepsies and epilepsy syndromes) in a secondary school population; and (ii) compare the management of epilepsy between secondary school pupils with and without special educational needs. METHODS: Retrospective observational study of a 250, 000 population (West Cheshire Health District). Pupils attending secondary school with epilepsy over a 1-year period were identified from the local Child Health Computer, school nurse and DGH records. Health records were examined to determine the prevalence, characteristics and management of the epilepsy, and the presence of any special educational needs, other learning difficulties or physical disability. RESULTS: The prevalence of epilepsy was 4.1 per 1000, being 10 times higher among adolescents who had special educational needs. Pupils with epilepsy and special educational needs had more poorly controlled epilepsy, but did not have a higher number of focal seizures nor were they taking a greater number of anti-epileptic drugs. A physical disability occurred five times more often in those with special educational needs and epilepsy. While epilepsy in pupils at mainstream school without special educational needs was better controlled, one-fifth of these subjects had poorly controlled epilepsy and a few also had physical disabilities. CONCLUSIONS: Epilepsy is more challenging to control in adolescents with special educational needs attending special schools. However, some pupils in mainstream secondary schools had poorly controlled epilepsy even when they did not have recognized special educational needs. Health and education professionals working across the range of secondary school environments need to be able to support pupils with challenging epilepsy, many of whom will also have special educational needs and some a physical disability, as an increasing number of adolescents with these difficulties are being placed in mainstream schools.

Evidence that children with special needs all require visual assessment.

DESIGN: A protocol-based ophthalmological assessment was performed on-site by a skilled investigator. PATIENTS: Children attending schools for special needs in Glasgow were offered eye care within their school. Outcomes for the first 240 participants are reported. OUTCOME MEASURES: Number of children for whom visual acuity could be measured and the results of refraction. Results 228/240 (95%) children were able to co-operate in a complete or nearly complete assessment of visual function. Visual acuity could be reliably assessed in 190 children using a range of tests from preferential looking to logMAR charts. 23/190 (12.1%) were found to be visually impaired according to WHO criteria. 105/228 (46.1%) subjects were found to have a refractive error which required correction. 50/105 subjects were wearing an adequate correction (ie, difference of less than 0.75 D sphere or cylinder compared with the retinoscopy result obtained on screening) and 55 (24.1%) children were prescribed a new correction. The prevalence of all types of refractive error was found to be significantly higher in the population with special needs, in particular the learning disabilities subgroup, compared with normal children. High hyperopia and astigmatism were common. CONCLUSION: With patience, suitably adapted methods, a familiar environment and skill, visual assessment is feasible in the majority of children with special needs. The prevalence of reduced visual acuity is high and unaddressed correctable refractive error is a major cause.

A fast track path improves access to palliative care for people with learning disabilities.

People with learning disabilities often experience inequalities in accessing general health services. This group, their families and carers need access to effective palliative care when facing a life limiting illness. This article describes the development and implementation of a fast track referral pathway for people with learning disabilities at St Francis Hospice in Essex. Our aim is to share this pathway so others can replicate the collaborative working to improve access to palliative care services for this group.

Exploring the lived experiences of people with learning disabilities who are dying of cancer.

BACKGROUND: Growing numbers of people with learning disabilities are living longer and dying of age related illnesses such as cancer. AIM: To explore the experiences of people with learning disabilities who have cancer. METHOD: The study used participant observation with 13 people with learning disabilities. All had a cancer diagnosis and 10 were terminally ill. Participants were visited regularly at home and in other settings, including hospitals. RESULTS: The main themes were: dependent lives; deprived lives; truth telling and understanding; the importance of families; inexperienced carers and unprepared services; and resilience. CONCLUSION: To understand the experiences of people with learning disabilities who are dying of cancer, it is important to understand their previous life experiences and key relationships. Healthcare professionals who treat people with respect, dignity and openness can make a positive difference to their care.

Confiabilidad de un cuestionario para rastreo de trastorno de aprendizaje (CEPA) en niños en edad escolar / Reliability of a learning disabilities assessment questionnaire (CEPA) in school-aged children

The assessment questionnaires are basic tools used in research or in programs geared to the early, simple, and fast detection of a sickness in the general population, with a high level of accepted reliability and validity. Objective: to determine the reliability of an assessment cuestionnaire dealing with learning disabilities; which makes easy the detection of children who are more likely to have learning disabilities. Patients and Methods: a random sample of 681 children was chosen; they belonged to the 3rd and 4th socio-economic strata, aged 8 and 11, of primary basic schooling education, from 4 educational institutions of a neighboring village of the Metropolitan Area of Medellin and who willingly decided to participate in the study. From this population, a non-random sample of 80 individuals was taken who met the inclusion criteria to carry out a pilot test. The questionnaire comprises 39 items comprising 8 frequent areas of difficulties. It is designed to assess the cognitive and language processes.

Los cuestionarios de rastreo son herramientas básicas usadas en las investigaciones o en los programas dirigidos a la detección temprana,sencilla y rápida de una enfermedad en la población general, con un nivel de confiabilidad y de validez aceptados. Objetivo: Determinar la confiabilidad de un cuestionario de rastreo para la evaluación de las dificultades del aprendizaje que facilite la detección de los niños que tengan mayor probabilidad de tener trastornos del aprendizaje. Pacientes y métodos. Se seleccionóuna muestra aleatoria de 681 niños de estrato socio económico 3 y 4, en edades entre 8 y 11 años, de escolaridad básica primaria, de 4instituciones de un corregimiento adjunto al área metropolitana de la ciudad de Medellín y que aceptaron participar en el estudio. De este universo poblacional se retomo unamuestra no aleatoria de 80 sujetos quecumplieran los criterios de inclusión pararealizan una prueba piloto. El cuestionario comprende 39 ítemes que agrupa 8 áreas frecuentes de dificultades, está diseñado paraevaluar procesos cognoscitivos y del lenguaje.