Readability, presentation and quality of allergy-related patient information leaflets: a cross sectional and longitudinal study

Objective: Patient information leaflets (PILs) are widely used to reinforce or illustrate health information and to complement verbal consultation. The objectives of the study were to assess the readability and presentation of PILs published by Allergy UK, and to conduct a longitudinal assessment to evaluate the impact of leaflet amendment and revision on readability. Methods: Readability of Allergy UK leaflets available in 2013 was assessed using Simple Measure of Gobbledegook (SMOG) and Flesch-Kincaid Reading Grade Formula. Leaflet presentation was evaluated using the Clear Print Guidelines of the Royal National Institute of Blind People (RNIB) and the Patient Information Appraisal System developed by the British Medical Association (BMA). Changes in the leaflets’ readability scores over five years were investigated. Results: 108 leaflets, covering a wide range of allergic conditions and treatment options, were assessed. The leaflets had average SMOG and Flesch-Kincaid scores of 13.9 (range 11-18, SD 1.2) and 10.9 (range 5-17, SD 2.1) respectively. All leaflets met the RNIB Clear Print guidelines, with the exception of font size which was universally inadequate. The leaflets scored on average 10 (median 10, range 7-15) out of a maximum of 27 on the BMA checklist. The overall average SMOG score of 31 leaflets available in both 2008 and 2013 had not changed significantly. The process of leaflet revision resulted in 1% change in readability scores overall, with a predominantly upward trend with six leaflets increasing their readability score by >10% and only three decreasing by >10%. Conclusion: Allergy-related patient information leaflets are well presented but have readability levels that are higher than those recommended for health information. Involving service users in the process of leaflet design, together with systematic pre-publication screening of readability would enhance the accessibility and comprehensibility of written information for people with allergy and their careers

Exploring researchers' experiences of working with people with acquired brain injury

Purpose: This study aimed to investigate the challenges and positive experiences of researchers who work with people who have experienced an acquired brain injury and their families. Methods: People who were currently or had previously worked as a researcher in the field of acquired brain injury (using either quantitative or qualitative methods) were invited to participate in a focus group or individual interview about their experiences. An expert reference group meeting was held to discuss strategies that could be implemented to enhance the researcher experience based on the interview data. Results: A total of 19 researchers who worked across four different research teams took part in the study. Six inter-connected themes were identified: researcher motivation, meaning and fulfillment; human connection; knowing and understanding the role; complexity of brain injury in the research context; the research process; and state of the researcher. A number of recommendations for supporting researchers more effectively were identified. Discussion: Researchers described a number of positive aspects as well as tensions they encountered in their role. The findings highlight the need to ensure researchers are supported effectively to ensure the quality of research studies in the field of brain injury

Developing a comprehensive framework of community integration for people with acquired brain injury:a conceptual analysis

Purpose: Despite increasing emphasis on the importance of community integration as an outcome for acquired brain injury, there is still no consensus on the definition of community integration. The aim of this study was to complete a concept analysis of community integration in people with acquired brain injury. Materials and Methods: The method of concept clarification was used to guide concept analysis of community integration based on a literature review. Articles were included if they explored community integration in people with acquired brain injury. Data extraction was performed by the initial coding of (i) the definition of community integration used in the articles, (ii) attributes of community integration recognized in the articles' findings, and (iii) the process of community integration. This information was synthesised to develop a model of community integration. Results: Thirty-three articles were identified that met the inclusion criteria. The construct of community integration was found to be a non-linear process reflecting recovery over time, sequential goals, and transitions. Community integration was found to encompass six components including: independence, sense of belonging, adjustment, having a place to live, involved in a meaningful occupational activity and being socially connected into the community. Antecedents to community integration included individual, injury-related, environmental and societal factors. Conclusion: The findings of this concept analysis suggest that the concept of community integration is more diverse than previously recognised. New measures and rehabilitation plans capturing all attributes of community integration are needed in clinical practice. Keywords: Community integration, concept analysis, acquired brain injury, concept clarification, framewor

Bridging the goal intention-action gap in rehabilitation: a study of if-then implementation intentions in neurorehabilitation

Purpose: To test the feasibility and acceptability of an implementation intention strategy (if-then plans) increasingly used in health psychology to bridge the goal intention–action gap in rehabilitation with people with neurological conditions who are experiencing difficulties with mobility. Methods: Twenty people with multiple sclerosis (MS) and stroke, randomised to an experimental and control group, set up to three mobility related goals with a physiotherapist. The experimental group also formulated if-then plans for every goal. Data collection: Focus groups and interviews with participants and therapists; Patient Activation Measure (PAM), 10-m walk test, Rivermead Mobility Index, self-efficacy, subjective health status, quality of life. Results: Qualitative data highlighted one main theme: Rehabilitation in context, encapsulating the usefulness of the if-then strategy in thinking about the patient in the context of complexity, the usefulness of home-based rehabilitation, and the perceived need for a few more sessions. Changes in walking speed were in the expected direction for both groups; PAM scores improved over 3 months in both groups. Conclusion: If-then plans were feasible and acceptable in bridging the goal intention–action gap in rehabilitation with people with MS and stroke, who are experiencing difficulties with mobility. This approach can now be adapted and trialled further in a definitive study. ä Implications for Rehabilitation Goal planning in rehabilitation necessitates specific strategies that help people engage in goal-related tasks. If-then plans aim to support people to deal more effectively with self-regulatory problems that might undermine goal striving and have been found to be effective in health promotion and health behaviour change. This feasibility study with people with a stroke and multiple sclerosis has demonstrated that if-then plans are feasible and acceptable to patients and physiotherapists in supporting goal-directed behaviour

The global burden of injury: Incidence, mortality, disability-adjusted life years and time trends from the global burden of disease study 2013

Background The Global Burden of Diseases (GBD), Injuries, and Risk Factors study used the disabilityadjusted life year (DALY) to quantify the burden of diseases, injuries, and risk factors. This paper provides an overview of injury estimates from the 2013 update of GBD, with detailed information on incidence, mortality, DALYs and rates of change from 1990 to 2013 for 26 causes of injury, globally, by region and by country. Methods Injury mortality was estimated using the extensive GBD mortality database, corrections for illdefined cause of death and the cause of death ensemble modelling tool. Morbidity estimation was based on inpatient and outpatient data sets, 26 cause-of-injury and 47 nature-of-injury categories, and seven follow-up studies with patient-reported long-term outcome measures. Results In 2013, 973 million (uncertainty interval (UI) 942 to 993) people sustained injuries that warranted some type of healthcare and 4.8 million (UI 4.5 to 5.1) people died from injuries. Between 1990 and 2013 the global age-standardised injury DALY rate decreased by 31% (UI 26% to 35%). The rate of decline in DALY rates was significant for 22 cause-of-injury categories, including all the major injuries. Conclusions Injuries continue to be an important cause of morbidity and mortality in the developed and developing world. The decline in rates for almost all injuries is so prominent that it warrants a general statement that the world is becoming a safer place to live in. However, the patterns vary widely by cause, age, sex, region and time and there are still large improvements that need to be made

Parent and teacher-reported child outcomes seven years after mild traumatic brain Injury: A nested case control study

Background: Increasing evidence suggests potential lifetime effects following mild traumatic brain injury (TBI) in childhood. Few studies have examined medium-term outcomes among hospitalized and non-hospitalized samples. Study aims were to describe children's behavioral and emotional adjustment, executive function (EF), quality of life, and participation at 7-years following mild TBI using parents' and teachers' reports. Methods: Nested case control study of 86 children (68% male, mean age at assessment = 11.27 years; range 7–17 years) who sustained a mild TBI 7-years previously, identified from a prospective, population-based study. They were compared to 69 children free from TBI (61% male, mean age at assessment = 11.12 years; range 5–17 years). In addition to parent-reported socio-demographic details, parents (mild TBI n = 86, non-TBI n = 69) completed age-appropriate standardized questionnaires about children's health-related quality of life, behavioral and emotional adjustment, EF, and social participation. Parents own mood was assessed using the Hospital Anxiety and Depression Scale. Teachers (mild TBI n = 53, non-TBI n = 42) completed questionnaires about children's behavioral and emotional adjustment, and EF. Results: Parent reports showed median group-level scores for cases were statistically significantly greater than controls for emotional symptoms, conduct problems, hyperactivity/inattention, total behavioral difficulties, inhibitory control, shifting, planning/organizing, and Global Executive Composite (total) EF difficulties (p-values 0.001–0.029). Parent reports of child quality of life and social participation were similar, as were teacher reports of child behavioral and emotional adjustment, and EF (p > 0.05). When examining clinical cut-offs, compared to controls, cases had a higher risk of parent-reported total EF difficulties (odds ratio = 3.00) and, to a lesser extent, total behavior problems (odds ratio = 2.51). Conclusions: As a group, children with a history of mild TBI may be at elevated risk for clinically significant everyday EF difficulties in the medium-term compared to non-TBI controls, as judged by their parents. Further multi-informant longitudinal research is required, following larger samples. Aspects requiring particular attention include pre-injury characteristics, such as sleep disturbances and comorbidities (e.g., headaches), that may act as potential confounders influencing the association between mild TBI and child behavioral problems

Traumatic brain injury. Integrated approaches to improve prevention, clinical care, and research

Executive summary A concerted effort to tackle the global health problem posed by traumatic brain injury (TBI) is long overdue. TBI is a public health challenge of vast, but insufficiently recognised, proportions. Worldwide, more than 50 million people have a TBI each year, and it is estimated that about half the world’s population will have one or more TBIs over their lifetime. TBI is the leading cause of mortality in young adults and a major cause of death and disability across all ages in all countries, with a disproportionate burden of disability and death occurring in low-income and middle-income countries (LMICs). It has been estimated that TBI costs the global economy approximately $US400 billion annually. Deficiencies in prevention, care, and research urgently need to be addressed to reduce the huge burden and societal costs of TBI. This Commission highlights priorities and provides expert recommendations for all stakeholders— policy makers, funders, health-care professionals, researchers, and patient representatives—on clinical and research strategies to reduce this growing public health problem and improve the lives of people with TBI. The epidemiology of TBI is changing: in high-income countries, the number of elderly people with TBI is increasing, mainly due to falls, while in LMICs, the burden of TBI from road traffic incidents is increasing. Data on the frequency of TBI and TBI-related deaths and on the economic impact of brain trauma are often incomplete and vary between countries. Improved, accurate epidemiological monitoring and robust health economic data collection are needed to inform health care policy and prevention programmes. Highly developed and coordinated systems of care are crucial for management of patients with TBI. However, in practice, implementation of such frameworks varies greatly and disconnects exist in the chain of care. Optimisation of systems of care should be high on the policy agenda and could yield substantial gains in terms of both patient outcomes and costs to society. TBI is a complex condition, and strong evidence to support treatment guidelines and recommendations is scarce. Most multicentre clinical trials of medical and surgical interventions have failed to show efficacy, despite promising preclinical results. At the bedside, treatment strategies are generally based on guidelines that promote a one-size-fits-all approach and are insufficiently targeted to the needs of individual patients. Attempts to individualise treatment are challenging owing to the diversity of TBI, and are hampered by the use of simplistic methods to characterise its initial type and severity. Advances in genomics, blood biomarkers, magnetic resonance imaging (MRI), and pathophysiological monitoring, combined with informatics to integrate data from multiple sources, offer new research avenues to improve disease characterisation and monitoring of disease evolution. These tools can also aid understanding of disease mechanisms and facilitate targeted treatment strategies for individual patients. Individualised management in the postacute phase and evaluation of the effectiveness of treatment and care processes depend on accurate quantification of outcomes. In practice, however, the use of simplistic methods hinders efforts to quantify outcomes after TBI of all severities. Development and validation of multidimensional approaches will be essential to improve measurement of clinical outcomes, for both research and patient care. In particular, we need to find better ways to characterise the currently under-recognised risk of long-term disabling sequelae in patients with relatively mild injuries. Prognostic models are important to help clinicians to provide reliable information to patients and relatives, and to facilitate comparative audit of care between centres and countries. There is an urgent need for further development, validation, and implementation of prognostic models in TBI, particularly for less severe TBI. This multitude of challenges in TBI—encompassing systems of care, clinical management, and research strategy—demands novel approaches to the generation of new evidence and its implementation in clinical practice. Comparative effectiveness research (CER) offers opportunities to capitalise on the diversity of TBI and systems of care and enables assessment of therapies in real-world conditions; high-quality CER studies can provide strong evidence to support guideline recommendations. The global challenges posed by TBI necessitate global collaborations and a change in research culture to endorse broad data shari

Machine learning algorithms performed no better than regression models for prognostication in traumatic brain injury

Objective: We aimed to explore the added value of common machine learning (ML) algorithms for prediction of outcome for moderate and severe traumatic brain injury. Study Design and Setting: We performed logistic regression (LR), lasso regression, and ridge regression with key baseline predictors in the IMPACT-II database (15 studies, n = 11,022). ML algorithms included support vector machines, random forests, gradient boosting machines, and artificial neural networks and were trained using the same predictors. To assess generalizability of predictions, we performed internal, internal-external, and external validation on the recent CENTER-TBI study (patients with Glasgow Coma Scale <13, n = 1,554). Both calibration (calibration slope/intercept) and discrimination (area under the curve) was quantified. Results: In the IMPACT-II database, 3,332/11,022 (30%) died and 5,233(48%) had unfavorable outcome (Glasgow Outcome Scale less than 4). In the CENTER-TBI study, 348/1,554(29%) died and 651(54%) had unfavorable outcome. Discrimination and calibration varied widely between the studies and less so between the studied algorithms. The mean area under the curve was 0.82 for mortality and 0.77 for unfavorable outcomes in the CENTER-TBI study. Conclusion: ML algorithms may not outperform traditional regression approaches in a low-dimensional setting for outcome prediction after moderate or severe traumatic brain injury. Similar to regression-based prediction models, ML algorithms should be rigorously validated to ensure applicability to new populations

Health care utilization and outcomes in older adults after Traumatic Brain Injury: A CENTER-TBI study

Introduction The incidence of Traumatic Brain Injury (TBI) is increasingly common in older adults aged ≥65 years, forming a growing public health problem. However, older adults are underrepresented in TBI research. Therefore, we aimed to provide an overview of health-care utilization, and of six-month outcomes after TBI and their determinants in older adults who sustained a TBI. Methods We used data from the prospective multi-center Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury (CENTER-TBI) study. In-hospital and post-hospital health care utilization and outcomes were described for patients aged ≥65 years. Ordinal and linear regression analyses were performed to identify determinants of the Glasgow Outcome Scale Extended (GOSE), health-related quality of life (HRQoL), and mental health symptoms six-months post-injury. Results Of 1254 older patients, 45% were admitted to an ICU with a mean length of stay of 9 days. Nearly 30% of the patients received inpatient rehabilitation. In total, 554/1254 older patients completed the six-month follow-up questionnaires. The mortality rate was 9% after mild and 60% after moderate/severe TBI, and full recovery based on GOSE was reported for 44% of patients after mild and 6% after moderate/severe TBI. Higher age and increased injury severity were primarily associated with functional impairment, while pre-injury systemic disease, psychiatric conditions and lower educational level were associated with functional impairment, lower generic and disease-specific HRQoL and mental health symptoms. Conclusion The rate of impairment and disability following TBI in older adults is substantial, and poorer outcomes across domains are associated with worse preinjury health. Nonetheless, a considerable number of patients fully or partially returns to their preinjury functioning. There should not be pessimism about outcomes in older adults who survive.publishedVersio