Enabling self-directed computer use for individuals with cerebral palsy: a systematic review of available assistive devices and technologies

Aim  The purpose of this study was to systematically review published evidence on the development, use, and effectiveness of devices and technologies that enable or enhance self-directed computer access by individuals with cerebral palsy (CP). Methods  Nine electronic databases were searched using keywords ‘computer’, ‘software’, ‘spastic’, ‘athetoid’, and ‘cerebral palsy’; the reference lists of articles thus identified were also searched. Thirty articles were selected for review, with 23 reports of development and usability testing of devices and seven evaluations of algorithms to increase computer recognition of input and cursor movements. Results  Twenty-four studies had fewer than 10 participants with CP, with a wide age range of 5 to 77 years. Computer task performance was usually tested, but only three groups sought participant feedback on ease and comfort of use. International standards exist to evaluate effectiveness of non-keyboard devices, but only one group undertook this testing. None of the study designs were higher than American Academy for Cerebral Palsy and Developmental Medicine level IV. Interpretation  Access solutions for individuals with CP are in the early stages of development. Future work should include assessment of end-user comfort, effort, and performance as well as design features. Engaging users and therapists when designing and evaluating technologies to enhance computer access may increase acceptance and improve performance

Identifying risks related to road traffic accidents among vulnerable population in Moneragala district, Sri Lanka

Objectives: To identify individual and environmental risks related to road traffic accidents(RTA) among elderly (>60years) and disabled people (>5years living with physical, sensory or mobility impairment) in Moneragala district.Methods: Study was designed as community based participatory research. Participants were vulnerable road users (elderly and disabled). Eight focus group discussions (8-10 in each) were conducted with elderly and disabled to identify local and regional destinations that were most important to access, perceived risks related to RTA and needs/suggestions for road safety. Participants were encouraged to photograph the environment barriers and facilitators for road safety. ‘Photovoice’ is increasingly used as valuable adjunct in participatory research-a voice better heard through.Results: Frequently visited places identified by older people were the hospital, temple, village houses, community hall and bank. For disabled it varied by age, as vocational training centre, special needs school and community hall. Mostly used travel modes were public bus, three wheeled-vehicles or walking. Transportation barriers for the elderly were identified as poor road conditions, lack of disability-friendly transportation system, financial constraints and negative human factors. Disabled found accessibility to public places a major barrier. These facts were supported by photographs. Suggestions for improvement included awareness programs among people involved in transportation, cost effective transportation modes, mass media acknowledgments of rights of elderly and disabled, more effective legislation and improved road infrastructure.Conclusions: It is evident that many places the study population frequently travels are located in the city. They face many risks when travelling to these destinations. It is proposed to improve road conditions, modify modes of transportation, rigorous law enforcement and awareness programs among public to minimize the road related risks faced by disabled and elderl

First-in-human Phase 1 open label study of the BET inhibitor ODM-207 in patients with selected solid tumours

Background Bromodomain and extra-terminal domain (BET) proteins are reported to be epigenetic anti-cancer drug targets. This first-in-human study evaluated the safety, pharmacokinetics and preliminary anti-tumour activity of the BET inhibitor ODM-207 in patients with selected solid tumours. Methods This was an open-label Phase 1 study comprised of a dose escalation part, and evaluation of the effect of food on pharmacokinetics. ODM-207 was administered orally once daily. The dose escalation part was initiated with a dose titration in the initial cohort, followed by a 3 + 3 design. Results Thirty-five patients were treated with ODM-207, of whom 12 (34%) had castrate-resistant prostate cancer. One dose-limiting toxicity of intolerable fatigue was observed. The highest studied dose achieved was 2 mg/kg due to cumulative toxicity observed beyond the dose-limiting toxicity (DLT) treatment window. Common AEs included thrombocytopenia, asthenia, nausea, anorexia, diarrhoea, fatigue, and vomiting. Platelet count decreased proportionally to exposure with rapid recovery upon treatment discontinuation. No partial or complete responses were observed. Conclusions ODM-207 shows increasing exposure in dose escalation and was safe at doses up to 2 mg/kg but had a narrow therapeutic window.Peer reviewe

The role of social networks in supporting the travel needs of people after serious traumatic injury: a nested qualitative study

This study explores the importance of social networks and transport for people who had experienced a traumatic injury three years earlier. Many participants found travelling difficult because of pain, discomfort, fatigue and mobility impairments caused by their injuries which led them to be highly dependent on being a passenger in cars driven by others, or on public transport and taxis, to meet their travels needs. After injury, participants’ needs to travel were often high because they had to attend regular medical and physiotherapy appointments. They also needed to be able to travel to reengage with social activities. For those who used public transport or taxis, new challenges were faced in terms of the preplanning, lack of accessibility and availability of these modes. Participants that lived in rural areas with infrequent public transport keenly felt their dependence on others for transport as did those who were wheelchair dependent where car based travel was the only option. Participants described their dependence on others for travel as feeling they were a burden. For some participants their social network could not help with travel. This meant that they either did not travel or had to absorb the costs of taxis. Practical support from the Transport Accident Commission compensation scheme in terms of taxi vouchers were useful and appreciated. However, the service provided by taxis was perceived as costly and, at times, described as unreliable and unsafe. There were many hidden costs related to supporting the travel needs of injured people. Participants who could not travel and reengage with social activities felt emotionally low, isolated and vulnerable. Service providers need to consider injured people’s ability to access support for travel, the availability of accessible transport and help with travel costs in order to support their physical and psychological recovery

The clinical utility of molecular diagnostic testing for primary immune deficiency disorders: a case based review

Primary immune deficiency disorders (PIDs) are a group of diseases associated with a genetic predisposition to recurrent infections, malignancy, autoimmunity and allergy. The molecular basis of many of these disorders has been identified in the last two decades. Most are inherited as single gene defects. Identifying the underlying genetic defect plays a critical role in patient management including diagnosis, family studies, prognostic information, prenatal diagnosis and is useful in defining new diseases. In this review we outline the clinical utility of molecular testing for these disorders using clinical cases referred to Auckland Hospital. It is written from the perspective of a laboratory offering a wide range of tests for a small developed country

Patient-identified information and communication needs in the context of major trauma

Background: Navigating complex health care systems during the multiple phases of recovery following major trauma entails many challenges for injured patients. Patients’ experiences communicating with health professionals are of particular importance in this context. The aim of this study was to explore seriously injured patients’ perceptions of communication with and information provided by health professionals in their first 3-years following injury. Methods: A qualitative study designed was used, nested within a population-based longitudinal cohort study. Semi-structured telephone interviews were undertaken with 65 major trauma patients, aged 17 years and older at the time of injury, identified through purposive sampling from the Victorian State Trauma Registry. A detailed thematic analysis was undertaken using a framework approach. Results: Many seriously injured patients faced barriers to communication with health professionals in the hospital, rehabilitation and in the community settings. Key themes related to limited contact with health professionals, insufficient information provision, and challenges with information coordination. Communication difficulties were particularly apparent when many health professionals were involved in patient care, or when patients transitioned from hospital to rehabilitation or to the community. Difficulties in patient-health professional engagement compromised communication and exchange of information particularly at transitions of care, e.g., discharge from hospital. Conversely, positive attributes displayed by health professionals such as active discussion, clear language, listening and an empathetic manner, all facilitated effective communication. Most patients preferred communication consistent with patient-centred approaches, and the use of multiple modes to communicate information. Conclusions: The communication and information needs of seriously injured patients were inconsistently met over the course of their recovery continuum. To assist patients along their recovery trajectories, patient-centred communication approaches and considerations for environmental and patients’ health literacy are recommended. Additionally, assistance with information coordination and comprehensive multimodal information provision should be available for injured patients.Sandra Braaf, Shanthi Ameratunga, Andrew Nunn, Nicola Christie, Warwick Teague, Rodney Judson and Belinda J. Gabb

Prediction of posttraumatic stress disorder among adults in flood district

<p>Abstract</p> <p>Background</p> <p>Flood is one of the most common and severe forms of natural disasters. Posttraumatic stress disorder (PTSD) is a common disorder among victims of various disasters including flood. Early prediction for PTSD could benefit the prevention and treatment of PTSD. This study aimed to establish a prediction model for the occurrence of PTSD among adults in flood districts.</p> <p>Methods</p> <p>A cross-sectional survey was carried out in 2000 among individuals who were affected by the 1998 floods in Hunan, China. Multi-stage sampling was used to select subjects from the flood-affected areas. Data was collected through face-to-face interviews using a questionnaire. PTSD was diagnosed according to DSM-IV criteria. Study subjects were randomly divided into two groups: group 1 was used to establish the prediction model and group 2 was used to validate the model. We first used the logistic regression analysis to select predictive variables and then established a risk score predictive model. The validity of model was evaluated by using the model in group 2 and in all subjects. The area under the receiver operation characteristic (ROC) curve was calculated to evaluate the accuracy of the prediction model.</p> <p>Results</p> <p>A total of 2336 (9.2%) subjects were diagnosed as probable PTSD-positive individuals among a total of 25,478 study subjects. Seven independent predictive factors (age, gender, education, type of flood, severity of flood, flood experience, and the mental status before flood) were identified as key variables in a risk score model. The area under the ROC curve for the model was 0.853 in the validation data. The sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV) of this risk score model were 84.0%, 72.2%, 23.4%, and 97.8%, respectively, at a cut-off value of 67.5 in the validation data.</p> <p>Conclusions</p> <p>A simple risk score model can be used to predict PTSD among victims of flood.</p

Impact of an injury hospital admission on childhood academic performance: a Welsh population-based data linkage study

Background While injuries can impact on children’s educational achievements (with threats to their development and employment prospects), these risks are poorly quantified. This population-based longitudinal study investigated the impact of an injury-related hospital admission on Welsh children’s academic performance. Methods The Secure Anonymised Information Linkage databank, 55 587 children residing in Wales from 2006 to 2016 who had an injury hospital admission (58.2% males; 16.8% born in most deprived Wales area; 80.1% one injury hospital admission) were linked to data from the Wales Electronic Cohort for Children. The primary outcome was the Core Subject Indicator reflecting educational achievement at key stages 2 (school years 3–6), 3 (school years 7–9) and 4 (school years 10–11). Covariates in models included demographic, birth, injury and school characteristics. Results Educational achievement of children was negatively associated with: pedestrian injuries (adjusted risk ratio, (95% CIs)) (0.87, (0.83 to 0.92)), cyclist (0.96, (0.94 to 0.99)), high fall (0.96, (0.94 to 0.97)), fire/flames/smoke (0.85, (0.73 to 0.99)), cutting/piercing object (0.96, (0.93 to 0.99)), intentional self-harm (0.86, (0.82 to 0.91)), minor traumatic brain injury (0.92, (0.86 to 0.99)), contusion/open wound (0.93, (0.91 to 0.95)), fracture of vertebral column (0.78, (0.64 to 0.95)), fracture of femur (0.88, (0.84 to 0.93)), internal abdomen/pelvic haemorrhage (0.82, (0.69 to 0.97)), superficial injury (0.94, (0.92 to 0.97)), young maternal age (<18 years: 0.91, (0.88 to 0.94); 19–24 years: 0.94, (0.93 to 0.96)); area based socioeconomic status (0.98, (0.97 to 0.98)); moving to a more deprived area (0.95, (0.93 to 0.97)); requiring special educational needs (0.46, (0.44 to 0.47)). Positive associations were: being female (1.04, (1.03 to 1.06)); larger pupil school sizes and maternal age 30+ years. Conclusion This study highlights the importance on a child’s education of preventing injuries and implementing intervention programmes that support injured children. Greater attention is needed on equity-focused educational support and social policies addressing needs of children at risk of underachievement, including those from families experiencing poverty

Children admitted to hospital following unintentional injury: perspectives of health service providers in Aotearoa/New Zealand

<p>Abstract</p> <p>Background</p> <p>Unintentional injuries are the leading cause of death and hospitalisation among New Zealand children, with indigenous Māori and ethnic minority Pacific children significantly over represented in these statistics. International research has shown that many children hospitalised for injury, as well as their families experience high levels of stress, and ethnic disparities in the quality of trauma care are not uncommon. The research on which this paper is based sought to identify key issues and concerns for New Zealand's multi-ethnic community following hospitalisation for childhood injury in order to inform efforts to improve the quality of trauma services. This paper reports on service providers' perspectives complementing previously published research on the experiences of families of injured children.</p> <p>Methods</p> <p>A qualitative research design involving eleven in-depth individual interviews and three focus groups was used to elicit the views of 21 purposefully selected service provider key informants from a range of professional backgrounds involved in the care and support of injured children and their families in Auckland, New Zealand. Interviews were transcribed and data were analysed using thematic analysis.</p> <p>Results</p> <p>Key issues identified by service providers included limited ability to meet the needs of children with mild injuries, particularly their emotional needs; lack of psychological support for families; some issues related to Māori and Pacific family support services; lack of accessible and comprehensive information for children and families; poor staff continuity and coordination; and poor coordination of hospital and community services, including inadequacies in follow-up plans. There was considerable agreement between these issues and those identified by the participant families.</p> <p>Conclusions</p> <p>The identified issues and barriers indicate the need for interventions for service improvement at systemic, provider and patient levels. Of particular relevance are strategies that enable families to have better access to information, including culturally appropriate oral and written sources; improve communication amongst staff and between staff and families; and carefully developed discharge plans that provide care continuity across boundaries between hospital and community settings. Māori and Pacific family support services are important and need better resourcing and support from an organisational culture responsive to the needs of these populations.</p