The Care and Management of Children and Young People with Ataxia Telangiectasia Provided by Nurses and Allied Health Professionals: a Scoping Review.

Ataxia telangiectasia (A-T) is a rare, multisystem progressive condition that typically presents in early childhood. In the absence of cure, people with A-T require coordinated multidisciplinary care to manage their complex array of needs and to minimize the disease burden. Although symptom management has proven benefits for this population, including improved quality of life and reduced complications, there is a need for guidance specific to the nursing and allied healthcare teams who provide care within the community. A scoping review, adopting the Joanna Briggs Institute methodology, was undertaken. It aimed to identify and map the available expertise from nursing and allied healthcare and management of children and young people with A-T ≤ 18 years of age. A rigorous search strategy was employed which generated a total of 21,118 sources of evidence, of which 50 were selected for review following screening by experts. A range of interventions were identified that reported a positive impact on A-T-related impairments, together with quality of life, indicating that outcomes can be improved for this population. Most notable interventions specific to A-T include therapeutic exercise, inspiratory muscle training, and early nutritional assessment and intervention. Further research will be required to determine the full potential of the identified interventions, including translatability to the A-T setting for evidence related to other forms of ataxia. Large gaps exist in the nursing and allied health evidence-base, highlighting a need for robust research that includes children and young people with A-T and their families to better inform and optimize management strategies.

Vital Signs: Maternity Care Experiences - United States, April 2023.

Introduction: Maternal deaths increased in the United States during 2018-2021, with documented racial disparities. Respectful maternity care is a component of quality care that includes preventing harm and mistreatment, engaging in effective communication, and providing care equitably. Improving respectful maternity care can be part of multilevel strategies to reduce pregnancy-related deaths. Methods: CDC analyzed data from the PN View Moms survey administered during April 24-30, 2023, to examine the following components of respectful care: 1) experiences of mistreatment (e.g., violations of physical privacy, ignoring requests for help, or verbal abuse), 2) discrimination (e.g., because of race, ethnicity or skin color; age; or weight), and 3) reasons for holding back from communicating questions or concerns during maternity (pregnancy or delivery) care. Results: Among U.S. mothers with children aged <18 years, 20% reported mistreatment while receiving maternity care for their youngest child. Approximately 30% of Black, Hispanic, and multiracial respondents and approximately 30% of respondents with public insurance or no insurance reported mistreatment. Discrimination during the delivery of maternity care was reported by 29% of respondents. Approximately 40% of Black, Hispanic, and multiracial respondents reported discrimination, and approximately 45% percent of all respondents reported holding back from asking questions or discussing concerns with their provider. Conclusions and implications for public health practice: Approximately one in five women reported mistreatment during maternity care. Implementing quality improvement initiatives and provider training to encourage a culture of respectful maternity care, encouraging patients to ask questions and share concerns, and working with communities are strategies to improve respectful maternity care.

Patient research priority setting partnership in human T-cell lymphotropic virus type I.

INTRODUCTION: Human T-cell lymphotropic virus type 1 (HTLV-1) is a chronic infection affecting 5-10 million people worldwide. Ten percent develop HTLV-1-associated diseases, and 3%-5% develop HTLV-1-associated myelopathy (HAM)/tropical spastic paraparesis. Low health-related quality of life (HRQoL) is a significant concern for those with HTLV-1, and little is known about how it impacts daily life or what patients need from healthcare services. To address this, we report on patient involvement workshops aimed at identifying research priorities for HTLV-1 health service provision. METHODS: Participants recruited through HTLV-1 clinics in England attended six 90-min virtual workshops over 10 months, and two 60-min consolidation workshops. Content developed iteratively from topic focussed group discussions. All workshops were video-recorded with consent, transcribed verbatim and thematically analysed. Using consensus voting rounds, participants individually ranked their top six and then collectively their top three research priorities from the themes inferred from the analysis. A final feedback session explored the experiences of participating in the workshops. FINDINGS: Twenty-seven people with HTLV-1 engaged with the workshops with up to 22 participants attending each meeting. The majority were diagnosed with HAM (n = 22). The top three research priorities were identified as understanding disease progression, psychosocial wellbeing, and information and knowledge. Participants valued being asked to set research priorities that directly addressed their needs and enjoyed the workshops. They stressed the importance of patient advocates for promoting research that positively impacts everyday life. CONCLUSION: This is the first of this type of research engagement with people with HTLV-1 in the United Kingdom. Participants identified several avenues of investigation that could lead to improvements in healthcare services and HRQoL. Participants believed the workshops signified the start of a conversation to progress person-centred and meaningful research in HTLV-1. PATIENT OR PUBLIC CONTRIBUTION: People living with HTLV-1 were involved in the iterative design, conduct, analysis, writing and dissemination of this project through the patient involvement workshops. As a result of this engagement, a patient led advisory group has been set up to assist with the dissemination of the findings.

Improving Pain Reassessment and Documentation Rates: A Quality Improvement Project in a Teaching Hospital's Emergency Department.

INTRODUCTION: ED pain score reassessment and documentation rates were drastically low according to sampled data from the St. Margaret Hospital Emergency Department, leading to difficult pain management encounters for clinicians. The purpose of this project was to improve pain score reassessment rates in ED patients who were discharged with extremity pain. METHODS: This project was an 8-month, pre-postinterventional (preintervention: September-November 2018, intervention: December 2018-January 2019, and postintervention: February-April 2019) quality improvement project that took place in a community hospital emergency department. Emergency nurses participated in 6 focus groups, allowing for the creation of focus group-themed interventions at the request of the nursing staff. Daily audits of pain reassessment and documentation rates for individual nurses took place during the month of January 2019. In addition, a weekly newsletter was created and reported the ED pain reassessment and documentation rates. RESULTS: All patient encounters (581) were reviewed over the 8-month period. Baseline pain score reassessment and documentation rates were 36.2% (confidence interval, 30.3%-42.3%) in the emergency department. Pain reassessment and documentation rates increased to 62.3% (confidence interval, 56.8%-67.6%) during the 3-month postintervention period. DISCUSSION: Implementing daily audits and weekly newsletters that created transparency of individual and group performances increased pain score reassessment and documentation rates.

Exercise and Physical Therapy Interventions for Children with Ataxia: A Systematic Review.

The effectiveness of exercise and physical therapy for children with ataxia is poorly understood. The aim of this systematic review was to critically evaluate the range, scope and methodological quality of studies investigating the effectiveness of exercise and physical therapy interventions for children with ataxia. The following databases were searched: AMED, CENTRAL, CDSR, CINAHL, ClinicalTrials.gov, EMBASE, Ovid MEDLINE, PEDro and Web of Science. No limits were placed on language, type of study or year of publication. Two reviewers independently determined whether the studies met the inclusion criteria, extracted all relevant outcomes, and conducted methodological quality assessments. A total of 1988 studies were identified, and 124 full texts were screened. Twenty studies were included in the review. A total of 40 children (aged 5-18 years) with ataxia as a primary impairment participated in the included studies. Data were able to be extracted from eleven studies with a total of 21 children (aged 5-18 years), with a range of cerebellar pathology. The studies reported promising results but were of low methodological quality (no RCTs), used small sample sizes and were heterogeneous in terms of interventions, participants and outcomes. No firm conclusions can be made about the effectiveness of exercise and physical therapy for children with ataxia. There is a need for further high-quality child-centred research.

Exercise interventions for cerebral palsy.

BACKGROUND: Cerebral palsy (CP) is a neurodevelopmental disorder resulting from an injury to the developing brain. It is the most common form of childhood disability with prevalence rates of between 1.5 and 3.8 per 1000 births reported worldwide. The primary impairments associated with CP include reduced muscle strength and reduced cardiorespiratory fitness, resulting in difficulties performing activities such as dressing, walking and negotiating stairs.Exercise is defined as a planned, structured and repetitive activity that aims to improve fitness, and it is a commonly used intervention for people with CP. Aerobic and resistance training may improve activity (i.e. the ability to execute a task) and participation (i.e. involvement in a life situation) through their impact on the primary impairments of CP. However, to date, there has been no comprehensive review of exercise interventions for people with CP. OBJECTIVES: To assess the effects of exercise interventions in people with CP, primarily in terms of activity, participation and quality of life. Secondary outcomes assessed body functions and body structures. Comparators of interest were no treatment, usual care or an alternative type of exercise intervention. SEARCH METHODS: In June 2016 we searched CENTRAL, MEDLINE, Embase, nine other databases and four trials registers. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and quasi-RCTs of children, adolescents and adults with CP. We included studies of aerobic exercise, resistance training, and 'mixed training' (a combination of at least two of aerobic exercise, resistance training and anaerobic training). DATA COLLECTION AND ANALYSIS: Two review authors independently screened titles, abstracts and potentially relevant full-text reports for eligibility; extracted all relevant data and conducted 'Risk of bias' and GRADE assessments. MAIN RESULTS: We included 29 trials (926 participants); 27 included children and adolescents up to the age of 19 years, three included adolescents and young adults (10 to 22 years), and one included adults over 20 years. Males constituted 53% of the sample. Five trials were conducted in the USA; four in Australia; two in Egypt, Korea, Saudi Arabia, Taiwan, the Netherlands, and the UK; three in Greece; and one apiece in India, Italy, Norway, and South Africa.Twenty-six trials included people with spastic CP only; three trials included children and adolescents with spastic and other types of CP. Twenty-one trials included people who were able to walk with or without assistive devices, four trials also included people who used wheeled mobility devices in most settings, and one trial included people who used wheeled mobility devices only. Three trials did not report the functional ability of participants. Only two trials reported participants' manual ability. Eight studies compared aerobic exercise to usual care, while 15 compared resistance training and 4 compared mixed training to usual care or no treatment. Two trials compared aerobic exercise to resistance training. We judged all trials to be at high risk of bias overall.We found low-quality evidence that aerobic exercise improves gross motor function in the short term (standardised mean difference (SMD) 0.53, 95% confidence interval (CI) 0.02 to 1.04, N = 65, 3 studies) and intermediate term (mean difference (MD) 12.96%, 95% CI 0.52% to 25.40%, N = 12, 1 study). Aerobic exercise does not improve gait speed in the short term (MD 0.09 m/s, 95% CI -0.11 m/s to 0.28 m/s, N = 82, 4 studies, very low-quality evidence) or intermediate term (MD -0.17 m/s, 95% CI -0.59 m/s to 0.24 m/s, N = 12, 1 study, low-quality evidence). No trial assessed participation or quality of life following aerobic exercise.We found low-quality evidence that resistance training does not improve gross motor function (SMD 0.12, 95% CI -0.19 to 0.43, N = 164, 7 studies), gait speed (MD 0.03 m/s, 95% CI -0.02 m/s to 0.07 m/s, N = 185, 8 studies), participation (SMD 0.34, 95% CI -0.01 to 0.70, N = 127, 2 studies) or parent-reported quality of life (MD 12.70, 95% CI -5.63 to 31.03, n = 12, 1 study) in the short term. There is also low-quality evidence that resistance training does not improve gait speed (MD -0.03 m/s, 95% CI -0.17 m/s to 0.11 m/s, N = 84, 3 studies), gross motor function (SMD 0.13, 95% CI -0.30 to 0.55, N = 85, 3 studies) or participation (MD 0.37, 95% CI -6.61 to 7.35, N = 36, 1 study) in the intermediate term.We found low-quality evidence that mixed training does not improve gross motor function (SMD 0.02, 95% CI -0.29 to 0.33, N = 163, 4 studies) or gait speed (MD 0.10 m/s, -0.07 m/s to 0.27 m/s, N = 58, 1 study) but does improve participation (MD 0.40, 95% CI 0.13 to 0.67, N = 65, 1 study) in the short-term.There is no difference between resistance training and aerobic exercise in terms of the effect on gross motor function in the short term (SMD 0.02, 95% CI -0.50 to 0.55, N = 56, 2 studies, low-quality evidence).Thirteen trials did not report adverse events, seven reported no adverse events, and nine reported non-serious adverse events. AUTHORS' CONCLUSIONS: The quality of evidence for all conclusions is low to very low. As included trials have small sample sizes, heterogeneity may be underestimated, resulting in considerable uncertainty relating to effect estimates. For children with CP, there is evidence that aerobic exercise may result in a small improvement in gross motor function, though it does not improve gait speed. There is evidence that resistance training does not improve gait speed, gross motor function, participation or quality of life among children with CP.Based on the evidence available, exercise appears to be safe for people with CP; only 55% of trials, however, reported adverse events or stated that they monitored adverse events. There is a need for large, high-quality, well-reported RCTs that assess the effectiveness of exercise in terms of activity and participation, before drawing any firm conclusions on the effectiveness of exercise for people with CP. Research is also required to determine if current exercise guidelines for the general population are effective and feasible for people with CP.

Rehabilitation via HOMe-Based gaming exercise for the Upper limb post Stroke (RHOMBUS): a qualitative analysis of participants' experience.

OBJECTIVE: To report participants' experiences of trial processes and use of the Neurofenix platform for home-based rehabilitation following stroke. The platform, consisting of the NeuroBall device and Neurofenix app, is a non-immersive virtual reality tool to facilitate upper limb rehabilitation following stroke. The platform has recently been evaluated and demonstrated to be safe and effective through a non-randomised feasibility trial (RHOMBUS). DESIGN: Qualitative approach using semistructured interviews. Interviews were audio recorded, transcribed verbatim and analysed using the framework method. SETTING: Participants' homes, South-East England. PARTICIPANTS: Purposeful sample of 18 adults (≥18 years), minimum 12 weeks following stroke, not receiving upper limb rehabilitation prior to the RHOMBUS trial, scoring 9-25 on the Motricity Index (elbow and shoulder), with sufficient cognitive and communicative abilities to participate. RESULTS: Five themes were developed which explored both trial processes and experiences of using the platform. Factors that influenced participant's decision to take part in the trial, their perceptions of support provided during the trial and communication with the research team were found to be important contextual factors effecting participants' overall experience. Specific themes around usability and comfort of the NeuroBall device, factors motivating persistence and perceived effectiveness of the intervention were highlighted as being central to the usability and acceptability of the platform. CONCLUSION: This study demonstrated the overall acceptability of the platform and identified areas for enhancement which have since been implemented by Neurofenix. The findings add to the developing literature on the interface between virtual reality systems and user experience. TRIAL REGISTRATION NUMBER: ISRCTN60291412.

The role of the TSC Alliance in advancing therapy development: a patient organization perspective.

Tuberous sclerosis complex (TSC) is a genetic disease leading to malformations, or tubers, in the cerebral cortex and growth of tumors, most frequently in the brain, heart, kidneys, skin, and lungs. Changes in the brain caused by TSC usually have the biggest negative impact on quality of life. Approximately 85% of individuals with TSC have epilepsy, and TSC-associated neuropsychiatric disorders (TAND) affect nearly all individuals with TSC in some way. TSC Alliance's research strategy is built upon both funding and catalyzing research. Through grants, the organization provides funding directly to researchers through a competitive application process. The organization has also built a set of resources available to researchers worldwide, including a Natural History Database, Biosample Repository, and Preclinical Consortium. These resources catalyze research because they are available to qualified academic or industry researchers around the world, enabling an almost unlimited number of scientists to access data and resources to enable and accelerate research on TSC. This research strategy continues to be shaped by the needs and priorities of the TSC community, working toward a future where everyone affected by TSC can live their fullest lives.

The role of the TSC Alliance in advancing therapy development: a patient organization perspective Finding a new treatment for any disease is a long and expensive process, and it can be even more challenging for a rare disease such as tuberous sclerosis complex (TSC). To encourage research on TSC and speed up the process developing new treatments, the TSC Alliance established a research strategy based upon the priorities of people living with TSC. TSC community members best know how the disease negatively affects their lives. Equally importantly, the TSC community is a necessary partner for any researcher or company who wants to bring forward a potential new treatment. The TSC Alliance awards research grants to individual researchers who are at early stages of their careers. We also collaborate with many researchers and healthcare providers, and with the TSC community, to build shared resources. These resources include data from medical records and biological samples, such as blood and tissue samples, which are shared with researchers around the world for a wide range of projects related to TSC. We also collaborate with researchers from academic laboratories and the pharmaceutical or biotech industry to test potential new drugs or other therapies in animals, which is required before new therapies can be tested in humans. Before and during human testing in clinical trials, we help researchers design a trial that is both meaningful to the TSC community and not overly burdensome to participants. As new therapies become available, the TSC Alliance educates the TSC community and advocates for patient access to new therapies. Over time, as more is learned about how best to monitor and treat people with TSC, the organization convenes a conference of TSC experts to update clinical consensus guidelines to guide improved treatment of this rare disease.

Circulating biomarkers of kidney angiomyolipoma and cysts in tuberous sclerosis complex patients.

Patients with tuberous sclerosis complex (TSC) develop multi-organ disease manifestations, with kidney angiomyolipomas (AML) and cysts being one of the most common and deadly. Early and regular AML/cyst detection and monitoring are vital to lower TSC patient morbidity and mortality. However, the current standard of care involves imaging-based methods that are not designed for rapid screening, posing challenges for early detection. To identify potential diagnostic screening biomarkers of AML/cysts, we performed global untargeted metabolomics in blood samples from 283 kidney AML/cyst-positive or -negative TSC patients using mass spectrometry. We identified 7 highly sensitive chemical features, including octanoic acid, that predict kidney AML/cysts in TSC patients. Patients with elevated octanoic acid have lower levels of very long-chain fatty acids (VLCFAs), suggesting that dysregulated peroxisome activity leads to overproduction of octanoic acid via VLCFA oxidation. These data highlight AML/cysts blood biomarkers for TSC patients and offers valuable metabolic insights into the disease.

Understanding physiotherapy and physiotherapy services: exploring the perspectives of adults living with cerebral palsy.

PURPOSE: To understand physiotherapy and physiotherapy services from the perspectives of adults with cerebral palsy (CP). METHODS: Twenty-two adults with CP (15 women, 7 men), from across the UK, aged between 23 and 51 years, Gross Motor Function Classification System I-V, were interviewed about their experiences of physiotherapy and physiotherapy services. Participants were recruited through advertisements placed with relevant national organisations. The interviews were transcribed and analysed according to principles of Reflective Lifeworld Research. A second analysis examined the findings in relation to Donabedian's structure-process-outcome framework for healthcare quality. RESULTS: Specialist services for adults with CP were described as scarce, unknowable, complex and disconnected through the life course. Specific problems included; structural dimensions such as access to and organisation of services, signposting to services and access to expert advice; process dimensions including a lack of attention to patients' perspectives, needs, priorities, experience and expertise; and outcome dimensions for example the negative impact of physiotherapy service configurations on health, well-being and quality of life. CONCLUSION: Study findings support grassroots calls to radically improve and increase physiotherapy services for adults with CP. Accessible and widely available specialist services, information and advice across the life course would do much to address unmet need. Implications for RehabilitationAdults with CP found it difficult to identify and access specialised physiotherapy services and to obtain information and advice to help them best manage their condition.Adults with CP need physiotherapy services throughout the different phases of their lives, to meet their present needs, and to anticipate and, where possible, to prevent future needs.Participants highly valued person-centred physiotherapy and we recommend this approach is adopted as the foundational philosophy guiding physiotherapy services and interventions for adults with CP.More specialist physiotherapy services are urgently needed to meet the needs of adults with CP in the UK.

Variations of pain medication use for patients with acute extremity pain in an emergency department: A quality improvement project.

OBJECTIVE: The opioid epidemic continues to take over 50,000 lives annually. At least 75 percent of patients present to an emergency department (ED) for pain. The objective of this study is to describe the characteristic(s) for receiving opioid, non-opioid, and combination analgesics in an ED for acute extremity pain. METHODS: A single-site, retrospective chart audit was conducted at a community-based teaching hospital. Patients ≥ 18 years old who were discharged from the ED with acute extremity pain and received at least one analgesic were included. Primary goal included determining characteristics associated with the prescribing of analgesics. Secondary goals included amount of pain score reduction, frequency of prescribing, and discharge prescription patterns among each group. Analyses consisted of univariate and multivariate general linear models analyses. RESULTS: There were 878 patients identified as having acute extremity pain between February and April 2019. A total of 335 patients met inclusion criteria and were separated into three groups: nonopioids (n = 200), opioids (n = 97), and combination analgesics (n = 38). The individual characteristics showing statistical differences (p < 0.05) between the groups were (1) an allergy to specific analgesics, (2) diastolic blood pressure > 90 mmHg, (3) heart rate > 100 bpm, (4) opioid use prior to ED admission, (5) prescriber level, and (6) discharge diagnosis. Multivariate analyses showed combination therapy (regardless of which two analgesics were administered) had a significant difference in mean pain score reduction compared to nonopioids (p < 0.05). CONCLUSION: There are patient, prescriber, and environment-specific characteristics that are associated with analgesic selection in an ED. Combination therapy had the greatest reduction in pain regardless of the two medications received.

Sleep duration and chronotype of pregnant women in the United States: An online cross-sectional survey study.

Sleep is an important behavior, and during pregnancy plays a critical role in promoting the health of both woman and child. Therefore, identifying and addressing sleep parameters during pregnancy, and associated disparities in maternal-child health outcomes, is a public health priority. This studied aimed to examine chronotype and sleep duration in pregnant women by sociodemographic factors. An online survey was distributed to currently pregnant women living in the greater Washington, DC, area of the United States from March to May of 2022. The survey included the ultra-short version of the Munich Chronotype Questionnaire (µMCTQ), which was used to calculate the mid-point of sleep time (MST; a measure of chronotype) and sleep duration, as well as demographic questions. Linear regression was used to assess differences in sleep outcomes by demographic factors. A sample of n = 142 currently pregnant women were eligible for analysis. In covariate adjusted models, sleep duration was longer among respondents ages 25-34 (09:52) compared with younger respondents ages 18-24 (08:59; p = 0.014), and shorter for those with a household income ≥ 100,000 United States dollars (USD) (07:42) compared with those with a household income < 50,000 USD (08:59; p = 0.001). No differences in mean mid-point of sleep were identified across demographic factors. Differences in sleep duration by age and household income were found among currently pregnant women. Future studies should investigate sleep parameters and other factors that may influence maternal-child health disparities.

Access, use and satisfaction with physiotherapy services among adults with cerebral palsy living in the United Kingdom and Ireland.

PURPOSE: The aims of this study were to describe how and why adults with CP living in the UK and Ireland accessed and used physiotherapy services; to describe the type of physiotherapy accessed and satisfaction with physiotherapy services and to examine the associations between relevant factors. METHODS: A cross-sectional semi-structured online survey was employed. Participants were adults with CP aged 18 and above living in the UK and Ireland; able to complete an online questionnaire in English independently or with technical or physical assistance. Data were collected from April 2019 to February 2020. RESULTS: Participants (n = 162) were aged 18-74 years. The majority were female (75%) and lived in the UK (83%). Ninety percent of participants reported a need for physiotherapy but only 35% received physiotherapy services. The most common reason for visiting physiotherapy was mobility decline (62%). Satisfaction with the availability and quality of physiotherapy services were 21% and 27%, respectively. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. CONCLUSION: Adults with CP did not receive the physiotherapy services that they perceived they needed. There is a need to develop physiotherapy services in collaboration with people living with CP.Implications of rehabilitationAdults with cerebral palsy (CP) needed physiotherapy services, but were not receiving the physiotherapy services that they perceive they needed.Adults were not satisfied with the availability or quality of physiotherapy services received.Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed.There is a need to develop physiotherapy services from a life-span perspective for adults living with CP.

Safety, feasibility, acceptability and preliminary effects of the Neurofenix platform for Rehabilitation via HOMe Based gaming exercise for the Upper-limb post Stroke (RHOMBUS): results of a feasibility intervention study.

OBJECTIVES: To investigate the safety, feasibility and acceptability of the Neurofenix platform for home-based rehabilitation of the upper limb (UL). DESIGN: A non-randomised intervention design with a parallel process evaluation. SETTING: Participants' homes, South-East England. PARTICIPANTS: Thirty adults (≥18 years), minimum 12-week poststroke, not receiving UL rehabilitation, scoring 9-25 on the Motricity Index (elbow and shoulder), with sufficient cognitive and communicative abilities to participate. INTERVENTIONS: Participants were trained to use the platform, followed by 1 week of graded game-play exposure and 6-week training, aiming for a minimum 45 min, 5 days/week. OUTCOMES: Safety was determined by assessing pain and poststroke fatigue at 8 and 12 weeks, and adverse events (AEs). Impairment, activity and participation outcomes were measured. Intervention feasibility was determined by the amount of specialist training and support required to complete the intervention, time and days spent training, and number of UL movements performed. Acceptability was assessed by a satisfaction questionnaire and semistructured interviews. RESULTS: Participants (14 women; mean (SD) age 60.0 (11.3) years) were a median of 4.9 years poststroke (minimum-maximum: 1-28 years). Twenty-seven participants completed the intervention. The odds of having shoulder pain were lower at 8 weeks (OR 0.45, 95% CI 0.24 to 0.83, p=0.010) and 12 weeks (OR 0.46, 95% CI 0.25 to 0.86, p=0.014) compared with baseline. Fugl-Meyer upper extremity, Motor Activity Log and passive range of movement improved. No other gains were recorded. Poststroke fatigue did not change. Thirty mild and short-term AEs and one serious (unrelated) AE were reported by 19 participants. Participants trained with the platform for a median of 17.4 hours over 7 weeks (minimum-maximum: 0.3-46.9 hours), equating to a median of 149 min per week. The median satisfaction score was 36 out of 40. CONCLUSION: The Neurofenix platform is a safe, feasible and well accepted way to support UL training for people at least three months poststroke. TRIAL REGISTRATION NUMBER: ISRCTN60291412.

Identifying factors that predict attrition among first year physiotherapy students: a retrospective analysis.

BACKGROUND: A number of first year students leave physiotherapy programmes every year. A high attrition rate has implications for the student and the academic institution. OBJECTIVES: To report the rate of attrition among first year physiotherapy students, and to identify contributing factor. DESIGN: Retrospective analysis. SETTING: University. PARTICIPANTS: Electronic student records for enrolled students 2010 to 2013. MEASURES: Independent variables; gender, age at entry, mode of admission, place of residence, ethnicity, fee status, level of education, disability, whether a student obtained a B in A level Biology, and whether a student repeated A level examinations. Logistic regression analysis was conducted to identify the relationship between independent variables and drop-out (failure to continue to the second year). RESULTS: Data from 338 students were included in the analysis. The percentage drop-out was 17%; 38 students (11%) failed, and 20 students (6%) withdrew voluntarily. Black and Asian students had greater odds of drop-out for any reason (Odds Ratio (OR): 6.23; 95% Confidence Interval (CI) 1.79 to 21.63, and OR: 6.43; 95% CI: 3.03 to 13.68 respectively), and due to failure (OR: 5.50, 95% CI: 1.27 to 23.70, and OR: 7.19; 95% CI: 3.02 to 17.08, respectively) compared to white British students. Students who lived off-campus were more likely to withdraw from the programme irrespective of ethnicity (OR: 4.65; 95% CI: 1.41 to 15.34). CONCLUSION: A significant number of students from ethnic minority backgrounds failed to progress. Specific strategies to retain students from ethnic minority backgrounds should be implemented. Students who live off-campus may be at high risk of drop-out; reasons for this should be investigated.

Contributions of childhood abuse and neglect to reward neural substrates in adolescence.

BACKGROUND: Childhood adverse experiences may come to bear particularly during adolescence, when neural reward systems are developing rapidly and psychopathology spikes. Despite prior work differentiating threat- (abuse) vs. deprivation- (neglect) related adversity, no research has yet identified their relative nor interactive contributions to reward neural substrates during adolescence. In the present study, we leveraged a diverse sample of adolescents with different childhood adversity profiles to examine neural responses to reward in relation to varying degrees of abuse vs. neglect. METHODS: Adolescents (N = 45; 23 females; mean age = 14.9 years, SD = 1.9) completed a child-friendly monetary incentive delay task during fMRI acquisition. The self-report Childhood Trauma Questionnaire assessed childhood abuse and neglect. Whole brain ANCOVA analyses evaluated reward anticipation (reward vs. no reward expected) and feedback (hitting vs. missing the target with a reward vs. no reward) in relation to abuse and neglect dimensions. RESULTS: Whole-brain analyses revealed that abuse, adjusted for neglect, is associated with greater differences between task conditions (reward vs. no reward, hit vs. miss) in regions associated with threat/emotion regulation (prefrontal and temporal cortices, as well as posterior regions including fusiform and posterior cingulate/precuneus). Additionally, level of neglect modulated neural response associated with abuse in prefrontal and temporoparietal regions, such that youths with high levels of both abuse and neglect showed qualitatively different, more exaggerated neural patterns compared to youths with elevated adversity in only one dimension. CONCLUSIONS: Our findings suggest that early experiences of abuse and neglect have a long developmental reach resulting in reward-related neural alterations in adolescence. Moreover, our results bolster theoretical conceptualizations of adversity along threat and deprivation dimensions and provide evidence that "adding up" adverse life events may not be sufficient to capture the qualitatively different neural profiles produced by differing combinations of types of adversity, which may in turn necessitate different treatment approaches.

What does it take to graduate? A qualitative exploration of the perceptions of successful physiotherapy graduates from one university in the UK.

Little is known about the complex factors that underpin persistence and success for preregistration physiotherapy students. This article presents findings from a qualitative study which explored the perceptions of eight recent graduates from one UK university about their experiences of their physiotherapy undergraduate degree program, and what they considered important in their success. Data were collected via one-to-one, semi-structured interviews. An in-depth thematic analysis was undertaken from which three overarching themes were inferred. First, successful learning was portrayed as a fundamentally social activity, embedded in tight learning communities of peers and tutors which conferred a firm sense of belonging. Second, participants recalled having a strong sense of commitment to their future identity as physiotherapists which may have helped them to resist some of the difficulties they encountered as students. Finally, a minority of these successful participants reported overcoming hardship on clinical placement by drawing on a range of personal and institutional resources. Crucially, these successful students' sense of belonging, and their alignment with the norms and values of the program, may have been critical to accessing and using these formal and informal resources.

Living with Ménière's disease: an interpretative phenomenological analysis.

Purpose: To explore the meanings of Ménière's disease from the perspective of people living with this condition and to understand what was considered significant and important in participants' everyday lives.Materials and methods: Four women with Ménière's disease participated in face-to-face semi-structured interviews. Accounts were recorded, transcribed, and analysed using an iterative process integral to Interpretative Phenomenological Analysis.Results: Three interconnected themes were identified. "You have no control whatsoever" conveys participants' perceptions of vertigo as having a disruptive and ongoing impact on physical and psychosocial function in everyday life. "Ménière's takes away your life completely" describes Ménière's as impinging on participants' most meaningful activities and relationships, and as restricting their ability to live their lives on their own terms. "You get on with life" recounts participants' efforts to refashion their lives whilst living with this condition and manage its most harmful effects. The psychosocial impact of living with Ménière's disease and its relevance to rehabilitation is discussed.Conclusions: Ménière's disease has an enduring physical and psychosocial impact. Clinicians who acknowledge and respond to an individual's subjective experience of their condition may be key to their engagement in therapy. Service users should have a voice in health service design and delivery.Implications for rehabilitationMénière's disease is a long-term disabling condition that not only impacts on physical and psychosocial functioning but also restricts quality of life through stigmatisation.Fear of triggering an attack of vertigo may prevent people with Ménière's disease from engaging with rehabilitation.Therapists who adopt a biopsychosocial approach and who recognise patients' efforts to control their symptoms as a positive form of resistance may be better equipped to empathetically support patients to engage in new activities that may be vital to improving their lives.

E-Survey of Current International Physiotherapy Practice for Children with Ataxia Following Surgical Resection of Posterior Fossa Tumour.

OBJECTIVE: To determine current international practice regarding physiotherapy input for children with ataxia following surgery for posterior fossa tumour. Design: An e-survey covering the following domains: participant demographics, treatment/ intervention, virtual training, intensity/timing of treatment, and aims and outcomes of physiotherapy management. PARTICIPANTS: Physiotherapists involved in the management of children with ataxia following surgical resection of posterior fossa tumour. Participants were contacted via 6 key groups; Paediatric Oncology Physiotherapy Network (POPs), Association of Paediatric Chartered Physiotherapists (APCP), European Paediatric Neurology Society (EPNS), International Society of Paediatric Oncology (SIOP)-Europe Brain Tumour Group, Posterior Fossa Society (PFS), and Pediatric Oncology Special Interest Group (SIG) (American Physical Therapy Association). RESULTS: A total of 96 physiotherapists participated: UK (n =53), rest of Europe (n = 23), USA/ Canada (n = 10), and Australia/NZ (n = 10). The most common physiotherapy interventions used were balance exercises, gait re-education and proximal control activities. The most frequently used adjuncts to treatment were mobility aids and orthotics. Challenges reported regarding physiotherapy treatment were: reduced availability of physiotherapy input following discharge from the acute setting, lack of evidence, impact of adjuvant oncology treatment, and psychosocial impact. CONCLUSION: This e-survey provides an initial scoping review of international physiotherapy practice in this area. It establishes a foundation for future research on improving rehabilitation of ataxia in this population.

The meanings of physiotherapy and exercise for people living with progressive cerebellar ataxia: an interpretative phenomenological analysis.

PURPOSE: To understand the meanings of exercise and physiotherapy for people living with a progressive cerebellar ataxia. METHOD: An interpretative phenomenological analysis was undertaken with 12 participants (4 women, 8 men) recruited via their membership of a national support group. Semistructured interviews were audiorecorded and transcribed. Data were analyzed using interpretivist methods. RESULTS: Two main themes were constructed. Firstly, participants highly valued building collaborative and supportive long-term therapeutic relationships with expert physiotherapists and were not necessarily looking to improve ataxia-related impairments. Secondly, self-devised exercise conferred multiple psychosocial benefits that were largely absent from physiotherapist-prescribed home exercise programs. CONCLUSION: People living with ataxia recounted uniquely situated and contextualized understandings of exercise and physiotherapy that may differ significantly from the meaning of these terms to physiotherapists. Special attention should be given to patients' perspectives in order to provide services that are meaningful and valued by people living with ataxia. Implications for Rehabilitation Physiotherapists should consider exploring the meaning of exercise and physiotherapy with individual patients to inform appropriate exercise prescription and advice. Poorly managed and inexpertly prescribed home exercise programs risk inadvertently disregarding the possible positive psychosocial effects of exercise participation and may prevent long-term engagement. To sustain long-term engagement prescribed exercises should be enjoyable, meaningful, satisfying and appropriately challenging. Physiotherapists should consider providing sustained, collaborative and flexible services.