Efficient Machine Reading Comprehension for Health Care Applications: Algorithm Development and Validation of a Context Extraction Approach.

BACKGROUND: Extractive methods for machine reading comprehension (MRC) tasks have achieved comparable or better accuracy than human performance on benchmark data sets. However, such models are not as successful when adapted to complex domains such as health care. One of the main reasons is that the context that the MRC model needs to process when operating in a complex domain can be much larger compared with an average open-domain context. This causes the MRC model to make less accurate and slower predictions. A potential solution to this problem is to reduce the input context of the MRC model by extracting only the necessary parts from the original context. OBJECTIVE: This study aims to develop a method for extracting useful contexts from long articles as an additional component to the question answering task, enabling the MRC model to work more efficiently and accurately. METHODS: Existing approaches to context extraction in MRC are based on sentence selection strategies, in which the models are trained to find the sentences containing the answer. We found that using only the sentences containing the answer was insufficient for the MRC model to predict correctly. We conducted a series of empirical studies and observed a strong relationship between the usefulness of the context and the confidence score output of the MRC model. Our investigation showed that a precise input context can boost the prediction correctness of the MRC and greatly reduce inference time. We proposed a method to estimate the utility of each sentence in a context in answering the question and then extract a new, shorter context according to these estimations. We generated a data set to train 2 models for estimating sentence utility, based on which we selected more precise contexts that improved the MRC model's performance. RESULTS: We demonstrated our approach on the Question Answering Data Set for COVID-19 and Biomedical Semantic Indexing and Question Answering data sets and showed that the approach benefits the downstream MRC model. First, the method substantially reduced the inference time of the entire question answering system by 6 to 7 times. Second, our approach helped the MRC model predict the answer more correctly compared with using the original context (F1-score increased from 0.724 to 0.744 for the Question Answering Data Set for COVID-19 and from 0.651 to 0.704 for the Biomedical Semantic Indexing and Question Answering). We also found a potential problem where extractive transformer MRC models predict poorly despite being given a more precise context in some cases. CONCLUSIONS: The proposed context extraction method allows the MRC model to achieve improved prediction correctness and a significantly reduced MRC inference time. This approach works technically with any MRC model and has potential in tasks involving processing long texts.

A Web-Based Tool to Report Adverse Drug Reactions by Community Pharmacists in Australia: Usability Testing Study.

BACKGROUND: Adverse drug reactions (ADRs) are unintended and harmful events associated with medication use. Despite their significance in postmarketing surveillance, quality improvement, and drug safety research, ADRs are vastly underreported. Enhanced digital-based communication of ADR information to regulators and among care providers could significantly improve patient safety. OBJECTIVE: This paper presents a usability evaluation of the commercially available GuildCare Adverse Event Recording system, a web-based ADR reporting system widely used by community pharmacists (CPs) in Australia. METHODS: We developed a structured interview protocol encompassing remote observation, think-aloud moderating techniques, and retrospective questioning to gauge the overall user experience, complemented by the System Usability Scale (SUS) assessment. Thematic analysis was used to analyze field notes from the interviews. RESULTS: A total of 7 CPs participated in the study, who perceived the system to have above-average usability (SUS score of 68.57). Nonetheless, the structured approach to usability testing unveiled specific functional and user interpretation issues, such as unnecessary information, lack of system clarity, and redundant data fields-critical insights not captured by the SUS results. Design elements like drop-down menus, free-text entry, checkboxes, and prefilled or auto-populated data fields were perceived as useful for enhancing system navigation and facilitating ADR reporting. CONCLUSIONS: The user-centric design of technology solutions, like the one discussed herein, is crucial to meeting CPs' information needs and ensuring effective ADR reporting. Developers should adopt a structured approach to usability testing during the developmental phase to address identified issues comprehensively. Such a methodological approach may promote the adoption of ADR reporting systems by CPs and ultimately enhance patient safety.

Linking Activity Theory Within User-Centered Design: Novel Framework to Inform Design and Evaluation of Adverse Drug Reaction Reporting Systems in Pharmacy.

BACKGROUND: Adverse drug reactions (ADRs) may cause serious injuries including death. Timely reporting of ADRs may play a significant role in patient safety; however, underreporting exists. Enhancing the electronic communication of ADR information to regulators and between health care providers has the potential to reduce recurrent ADRs and improve patient safety. OBJECTIVE: The main objectives were to explore the low rate of ADR reporting by community pharmacists (CPs) in Australia, evaluate the usability of an existing reporting system, and how this knowledge may influence the design of subsequent electronic ADR reporting systems. METHODS: The study was carried out in 2 stages. Stage 1 involved qualitative semistructured interviews to identify CPs' perceived barriers and facilitators to ADR reporting. Data were analyzed by thematic analysis, and identified themes were subsequently aligned to the task-technology fit (TTF) framework. The second stage involved a usability evaluation of a commercial web-based ADR reporting system. A structured interview protocol that combined virtual observation, think-aloud moderating techniques, retrospective questioning of the overall user experience, and a System Usability Scale (SUS). The field notes from the interviews were subjected to thematic analysis. RESULTS: In total, 12 CPs were interviewed in stage 1, and 7 CPs participated in stage 2. The interview findings show that CPs are willing to report ADRs but face barriers from environmental, organizational, and IT infrastructures. Increasing ADR awareness, improving workplace practices, and implementing user-focused electronic reporting systems were seen as facilitators of ADR reporting. User testing of an existing system resulted in above average usability (SUS 68.57); however, functional and user interpretation issues were identified. Design elements such as a drop-down menu, free-text entry, checkbox, and prefilled data fields were perceived to be extremely useful for navigating the system and facilitating ADR reporting. CONCLUSIONS: Existing reporting systems are not suited to report ADRs, or adapted to workflow, and are rarely used by CPs. Our study uncovered important contextual information for the design of future ADR reporting interventions. Based on our study, a multifaceted, theory-guided, user-centered, and best practice approach to design, implementation, and evaluation may be critical for the successful adoption of ADR reporting electronic interventions and patient safety. Future studies are needed to evaluate the effectiveness of theory-driven frameworks used in the design and implementation of ADR reporting systems.

Reporting, Monitoring, and Handling of Adverse Drug Reactions in Australia: Scoping Review.

BACKGROUND: Adverse drug reactions (ADRs) are unintended consequences of medication use and may result in hospitalizations or deaths. Timely reporting of ADRs to regulators is essential for drug monitoring, research, and maintaining patient safety, but it has not been standardized in Australia. OBJECTIVE: We sought to explore the ways that ADRs are monitored or reported in Australia. We reviewed how consumers and health care professionals participate in ADR monitoring and reporting. METHODS: The Arksey and O'Malley framework provided a methodology to sort the data according to key themes and issues. Web of Science, Scopus, Embase, PubMed, CINAHL, and Computer & Applied Sciences Complete databases were used to extract articles published from 2010 to 2021. Two reviewers screened the papers for eligibility, extracted key data, and provided descriptive analysis of the data. RESULTS: Seven articles met the inclusion criteria. The Adverse Medicine Events Line (telephone reporting service) was introduced in 2003 to support consumer reporting of ADRs; however, only 10.4% of consumers were aware of ADR reporting schemes. Consumers who experience side effects were more likely to report ADRs to their doctors or pharmacists than to the drug manufacturer. The documentation of ADR reports in hospital electronic health records showed that nurses and pharmacists were significantly less likely than doctors to omit the description of the drug reaction, and pharmacists were significantly more likely to enter the correct classification of the drug reaction than doctors. Review and analysis of all ADR reports submitted to the Therapeutic Goods Administration highlighted a decline in physician contribution from 28% of ADR reporting in 2003 to 4% in 2016; however, within this same time period, hospital and community pharmacists were a major source of ADR reporting (ie, 16%). In 2014, there was an increase in ADR reporting by community pharmacists following the introduction of the GuildLink ADR web-based reporting system; however, a year later, the reporting levels dropped. In 2018, the Therapeutic Goods Administration introduced a black triangle scheme on the packaging of newly approved medicines, to remind and encourage ADR reporting on new medicines, but this was only marginally successful at increasing the quantity of ADR reports. CONCLUSIONS: Despite the existence of national and international guidelines for ADR reporting and management, there is substantial interinstitutional variability in the standards of ADR reporting among individual health care facilities. There is room for increased ADR reporting rates among consumers and health care professionals. A thorough assessment of the barriers and enablers to ADR reporting at the primary health care institutional levels is essential. Interventions to increase ADR reporting, for example, the black triangle scheme (alert or awareness) or GuildLink (digital health), have only had marginal effects and may benefit from further improvement revisions and awareness programs.

Stress and social isolation, and its relationship to cardiovascular risk in young adults with intellectual disability.

PURPOSE: Stress produces many physiological changes, some of which may contribute to the development of cardiovascular disease (CVD). Individuals with intellectual disability (ID) are exposed to multiple and stressful challenges everyday which may put them at increased cardiovascular risk. This current study aimed to establish whether adults with ID experience higher levels of subjective stress and encounter different stressors (including social isolation) than the general population, and whether there is a relationship between stress and cardiometabolic profile in this population. METHODS: Adults with ID (n = 35) aged 18-45 years completed the Subjective Stress Survey, and underwent a physiological assessment to measure blood pressure, metabolic profile and subclinical CVD risk factors, and were compared to a control group (n = 29). Multiple regression was used to investigate whether cardiometabolic parameters were predicative of SSS scores. RESULTS: Findings showed adults with ID have higher perceived stress levels (total score ID: 21.3 ± 11.4 vs control: 13.9 ± 9.0, p = 0.006), which is elicited by unique stressors, when compared to people without ID. Stress was strongly associated with increased social isolation (r = -0.38, p = 0.002) and with obesity in females with mild ID (r = 0.72). Regression showed that arterial stiffness was predictive of total SSS score (p = 0.038). CONCLUSIONS: Adults with ID aged 18-45 years report higher levels of perceived stress when compared to people without ID.Implications for RehabilitationReducing stress in this young population may prevent development of arterial stiffness, and consequently lower the risk of cardiometabolic morbidity and mortality.There are unique targets for stress management in young adults with intellectual disability, including supporting decision-making and improving self-efficacy.Improving community integration and reducing social isolation may decrease perceived stress in young adults with intellectual disability.

An intervention to improve the self-efficacy of key workers to support parental wellbeing at an early childhood intervention service in Australia: a stepped wedged randomized cluster trial.

PURPOSE: It is well documented parents of children who have a disability are at an increased risk of poor mental health and wellbeing. A capacity building program designed to build key worker self-efficacy to support the mental health of parents accessing early childhood intervention services (ECIS) for their child was trialled. MATERIALS AND METHODS: A stepped-wedge cluster randomised trial design was utilised to deliver and evaluate a 12-month intervention program, comprising tailored professional development, resource development and sustainability measures. The repeated measurements on individuals in six clusters over three follow-up periods were analysed using linear mixed models. Comparison of the control and new program statistical means (adjusted for period effects) were assessed with an F test. RESULTS: Key workers reported increased confidence to talk to parents about their own wellbeing (d = 0.51, F(1, 51.8) = 4.28, p = 0.044) and knowledge of parental mental wellbeing improved (p = 0.006). A reduction in staff sick leave partially offset the cost of the intervention. CONCLUSIONS: A multi-pronged intervention targeted at key workers was found to be an effective way to ensure parental wellbeing is supported at an ECIS in Australia. TRIAL REGISTRATION: ACTRN12617001530314Implications for RehabilitationThere are implications for the development of children whose parents are experiencing high stress and poor mental health, whereby parents of children with disability or developmental delays are at increased risk.Findings from this study support the recommendation that a key worker is provided to holistically support families who access Early Childhood Intervention Services to aid in reducing poor parental wellbeing and child outcomes.Improved confidence to support and initiate conversations regarding parental wellbeing by key workers, in combination with support from management and the organisation to undertake this as part of their role, is a positive finding from this intervention study.

Barriers and Facilitators Influencing Real-time and Digital-Based Reporting of Adverse Drug Reactions by Community Pharmacists: Qualitative Study Using the Task-Technology Fit Framework.

BACKGROUND: Medication use can result in adverse drug reactions (ADRs) that cause increased morbidity and health care consumption for patients and could potentially be fatal. Timely reporting of ADRs to regulators may contribute to patient safety by facilitating information gathering on drug safety data. Currently, little is known about how community pharmacists (CPs) monitor, handle, and report ADRs in Australia. OBJECTIVE: This study aimed to identify perceived barriers to and facilitators of ADR reporting by CPs in Australia and suggest digital interventions. METHODS: A qualitative study with individual interviews was conducted with CPs working across Victoria, Australia, between April 2022 and May 2022. A semistructured interview guide was used to identify perceived barriers to and facilitators of ADR reporting among CPs. The data were analyzed using thematic analysis. We constructed themes from the CP-reported barriers and facilitators. The themes were subsequently aligned with the Task-Technology Fit framework. RESULTS: A total of 12 CPs were interviewed. Identified barriers were lack of knowledge of both the ADR reporting process and ADR reporting systems, time constraints, lack of financial incentives, lack of organizational support for ADR reporting, inadequate IT systems, and preference to refer consumers to physicians. The proposed facilitators of ADR reporting included enhancing CPs knowledge and awareness of ADRs, financial incentives for ADR reporting, workflow-integrated ADR reporting technology systems, feedback provision to CPs on the reported ADRs, and promoting consumer ADR reporting. CONCLUSIONS: Barriers to and facilitators of ADR reporting spanned both the task and technology aspects of the Task-Technology Fit model. Addressing the identified barriers to ADR reporting and providing workplace technologies that support ADR reporting may improve ADR reporting by CPs. Further investigations to observe ADR handling and reporting within community pharmacies can enhance patient safety by increasing ADR reporting by CPs.

Barriers to Accessing Healthcare: Perspectives from Autistic Adults and Carers.

Autistic adults have higher health needs compared to most, yet they continue to experience barriers to accessing appropriate healthcare. Presently, no qualitative research exists exploring these barriers which impact overall physical and mental health. We conducted a qualitative analysis in Victoria (Australia) of the perceived experiences of healthcare access for autistic adults (n = 9) and primary caregivers of autistic adults (n = 7). Specifically, a three-staged phenomenological approach was applied involving: (i) a communicative checklist, (ii) a health status survey and (iii) face-to-face interviews. Elements such as support, responsibilities and protective factors exhibited by caregivers, may impact healthcare access for autistic adults. Results indicate the need for further research exploring interdependent factors that impact healthcare access by caregivers, so evidence-based interventions can be developed to support caregivers in the future.

Coping with stigmatization and discrimination related to blindness and low vision.

PURPOSE/OBJECTIVE: Research suggests that effective coping with stress related to stigmatization and discrimination might protect the stigmatized persons against poor mental health outcomes associated with experiencing stress. Despite this, research specifically on coping with social stigma among people who are blind or have low vision has received less attention. We addressed this gap in the literature, by exploring the lived experiences of people who are blind or have low vision with regard to their perceptions of stigma and their coping responses. Research Method/Design: We employed a qualitative research method using an Interpretative Phenomenological Analysis (IPA). Participants were 11 Australians who were blind or had low vision, aged between 18 to 65 years, and were recruited via advertisement. Data was collected using in-depth interviews and was subjected to data analysis using IPA. RESULTS: Two sets of themes emerged from the data analysis which we classified under 2 superordinate themes labeled as Ways of Coping and Coping Skills and Resources. CONCLUSIONS/IMPLICATIONS: This study highlights the significance of personal and contextual aspects of coping with stigma and discrimination by demonstrating the complex nature of how people who are blind or have low vision cope with stigma. Coping efforts might be tenuous and require cognitive and/or behavioral skills and psychological resources and as such, individuals experiencing stigma might benefit from interventions aimed at improving coping skills and resources, such as self-advocacy, assertion, or positive reinterpretation. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Lowering blood pressure by changing lifestyle through a motivational education program: a cluster randomized controlled trial study protocol.

BACKGROUND: High blood pressure is an independent risk factor of cardiovascular disease (CVD) and is a major cause of disability and death. Managing a healthy lifestyle has been shown to reduce blood pressure and improve health outcomes. We aim to investigate the effectiveness of a lifestyle modification intervention program for lowering blood pressure in a rural area of Bangladesh. METHODS: A single-center cluster randomized controlled trial (RCT). The study will be conducted for 6 months, a total of 300 participants of age 30 to 75 years with 150 adults in each of the intervention and the control arms. The intervention arm will involve the delivery of a blended learning education program on lifestyle changes for the management of high blood pressure. The education program comprises evidence-based information with pictures, fact sheets, and published literature about the effects of high blood pressure on CVD development, increased physical activity, and the role of a healthy diet in blood pressure management. The control group involves providing information booklets and general advice at the baseline data collection point. The primary outcome will be the absolute difference in clinic SBP and DBP. Secondary outcomes include the difference in the percentage of people adopting regular exercise habits, cessation of smoking and reducing sodium chloride intake, health literacy of all participants, and the perceived barriers and enablers to adopt behavior changes by collecting qualitative data. Analyses will include analysis of covariance to report the mean difference in blood pressure between the control and the intervention group and the difference in change in blood pressure due to the intervention. DISCUSSION: The study will assess the effects of physical activity and lifestyle modification in controlling high blood pressure. This study will develop new evidence as to whether a simple lifestyle program implemented in a rural region of a low- and middle-income country will improve blood pressure parameters for people with different chronic diseases by engaging community people. TRIAL REGISTRATION: ClinicalTrials.gov NCT04505150 . Registered on 7 August 2020.

Does autonomic nervous system dysfunction influence cardiovascular disease risk in young adults with intellectual disability?

People with intellectual disability (ID) experience cardiometabolic-related morbidity and mortality. However, it has been suggested that this population presents and lives with underestimated cardiovascular risk factors at a younger age, hence affecting their overall health and quality of life and contributing to early mortality. We assessed autonomic nervous system function in subjects with ID (n = 39), aged 18-45 yr, through measures of sudomotor function, heart rate and systolic blood pressure variability, and cardiac baroreflex function. Traditional clinical cardiovascular measurements and a biochemical analysis were also undertaken. We found that young adults with ID presented with sudomotor dysfunction, impaired cardiac baroreflex sensitivity, and systolic blood pressure variability, when compared with age-matched control subjects (n = 38). Reduced hand and feet electrochemical skin conductance and asymmetry were significantly associated with having a moderate-profound ID. Autonomic dysfunction in individuals with ID persisted after controlling for age, sex, and other metabolic parameters. Subjects in the ID group also showed significantly increased blood pressure, body mass index, and waist/hip circumference ratio, as well as increased plasma hemoglobin A1c and high-sensitivity C-reactive protein levels. We conclude that autonomic dysfunction is present in young adults with ID and is more marked in those with more severe disability. These finding have important implications in developing preventative strategies to reduce the risk of cardiovascular disease in people with ID.NEW & NOTEWORTHY Adults with intellectual disability experience higher risk of premature death than the general population. Our investigation highlights increased cardiovascular risk markers and autonomic dysfunction in young adults with intellectual disability compared with control adults. Autonomic dysfunction was more marked in those with a more severe disability but independent of cardiovascular parameters. Assessment of autonomic nervous system (ANS) function may provide insight into the mechanisms of cardiometabolic disease development and progression in young adults with intellectual disability.

Healthcare access for autistic adults: A systematic review.

BACKGROUND: People with autism spectrum disorder (ASD) have an increased susceptibility for many chronic health conditions compared with their peers. An increasing number of adolescents are transitioning from pediatric to adult healthcare services. Thus, being able to access appropriate healthcare services that can not only address specific needs of the person but enable them to better manage healthcare conditions and decrease the development of preventable disease is necessary. A systematic review was conducted to identify barriers and enablers of healthcare access for autistic adults. METHODS: The studies included in the review were quantitative and qualitative and were published between 2003 and 2019. The participants for the review are considered to be adults (over 18 years of age) with a primary diagnosis of ASD. RESULTS: In total, 1290 studies were initially identified and 13 studies were included based on the inclusion and exclusion criteria outlined in a previous protocol paper. The analysis of these studies identified areas of concern to access appropriate healthcare, such as clinician knowledge, the environment, and life events. CONCLUSION: Identifying the barriers to healthcare, highlights ways healthcare services can regulate scope of practice, the physical environment, and the process of managing health conditions, thus, autistic adults can strive for optimal health. This review contributes to peer-reviewed evidence for future research and up-to-date information when developing and piloting health interventions for autistic adults. ETHICS AND DISSEMINATION: There are no human participants, data, or tissue being directly studied for the purposes of the review; therefore, ethics approval and consent to participate is not applicable. REGISTRATION AND STATUS: PROSPERO 2018 CRD42018116093.

"I think I could have designed it better, but I didn't think that it was my place": a critical review of home modification practices from the perspectives of health and of design.

Purpose: The research presented demonstrates the disharmony between end user goals and their consideration in service outcomes within ageing-in-place and asks "what can design offer health" within this domain.Methods: Data was collected using semi-structured interviews with various stakeholders within the context of ageing in place. All data are thematically analysed through a theoretical lens of control theory.Results: The results demonstrate a contrast between purported patient-centred care models, and a human-centred design model. This contrast in cultures causes a disconnect between the health practitioners and the end users, with a lack of clarity about the end user's intended engagement within the modification of their environment. Consequently, the goals of older adults are inadequately represented as typical home modification design processes often fail to support the reflection of goals in practice, in turn, restricting client engagement and control. Reviewing occupational therapy practices through the critical lens of control has highlighted opportunities for service improvements.Conclusion: The consideration of co-design methodologies within home modification design is a way to reinforce client engagement and provide better pathways for older adults to remain in control and raise acceptability of modification through a better-informed decision-making process.Implications for RehabilitationThe following points detail the implications of this research upon the rehabilitation practice and theory: Compliance with recommendations is deeply connected to a person's intrinsic sense of control within the clinical decision-making process.Co-design practices between practitioners and clients provide and novel pathway to achieve truly person-centred care and create better service experiences and clinical outcomes.The human-centred design methodology is highly applicable within clinical practice and provides an opportunity for clinicians to see and learn about their patients through a holistic lens centred around goals and motivations rather than physical impairments.The scoping of health literacy should be inclusive of all service artefacts and touchpoints that a client may encounter throughout the entire duration of experience, this includes design artefacts such as architectural drawings and other home modification designs.

A Capacity Building Program to Improve the Self-Efficacy of Key Workers to Support the Well-Being of Parents of a Child With a Disability Accessing an Early Childhood Intervention Service: Protocol for a Stepped-Wedge Design Trial.

BACKGROUND: Early childhood intervention services support children with disabilities or developmental delays from birth to school entry with the aim to achieve optimal outcomes for children and their families. A transdisciplinary approach to delivering early childhood intervention, particularly the key worker model, is considered the best practice, where allied health professionals (eg, speech pathologists, physiotherapists, occupational therapists, psychologists, and special educators) and the family work together as a collaborative team to share information, knowledge, and skills across disciplinary boundaries, with a key worker coordinating and delivering most of the intervention to achieve the goals for the child and their family. Initial qualitative research demonstrated parents want their key worker to also support their mental well-being. Poor mental well-being of parents of a child with a disability is of relevance to key workers because of its association with poor child-related outcomes. One of the major challenges key workers report in supporting families is managing parent distress and, because of lack of confidence, is a secondary negative impact on their own well-being. OBJECTIVE: This trial has been developed in response to the negative cycle of low professional confidence to support parents' mental health, increased key worker stress, and high turnover of employees working within a disability service setting. METHODS: A stepped-wedge design is used to deliver and evaluate a capacity building intervention program, over a 9-month period, for key workers to improve both parent and staff mental well-being. The primary outcome is key workers' self-efficacy in supporting parental mental well-being. Secondary outcomes include manager self-efficacy in supporting key workers and staff perceptions of supervisory support, staff job-related mental well-being, parental satisfaction with their key worker, parental mental well-being, and cost-consequence of the program. RESULTS: This study was funded in October 2014, supported by an Australian National Health and Medical Research Council Partnership Project grant (Grant number 1076861). Focus groups and individual face-to-face interviews were conducted from February to November 2015 with 40 parents who have a child with a disability and 13 key workers to gain insight into how the disability service could better promote child and family health and well-being and to inform about the development of the trial. CONCLUSIONS: The stepped-wedge study design is practical and ethical for research with a vulnerable population group of parents of a child with a disability, providing high quality data with all participants exposed to the intervention by the end of the trial. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12617001530314; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372578 (Archived by WebCite at http://www.webcitation.org/76XjDavnG). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/12531.

The disparities of healthcare access for adults with autism spectrum disorder: Protocol for a systematic review.

INTRODUCTION: Adults living with autism spectrum disorder (ASD) can experience many factors that may impact their everyday lives. Striving for optimal health and enduring a healthy lifestyle comes with the ability to access appropriate healthcare services, yet adults with ASD have unmet healthcare needs. The barriers and enablers of healthcare access for adults with ASD remain unclear. We will conduct a systematic review to explore what is currently known about healthcare access for adults with ASD, this will determine the level and appropriateness of access to healthcare services to better support the lives of adults with ASD. METHOD AND ANALYSIS: The systematic review will report on all studies that include quantitative, qualitative, and mixed-methods designs that consider healthcare access for adults with ASD. We will search 5 databases: EBSCOhost, Scopus, PubMed, the Cochrane Library, and Web of Science. The Mixed Methods Appraisal Tool (MMAT) will be used to assess quality of articles and the Cochrane RoB 2.0 Tool will be used to assess for bias. Clarifying the evidence in this area will be important for future research directions when developing and piloting health interventions for researchers and healthcare clinicians in the field. ETHICS AND DISSEMINATION: There are no human participants, data, or tissue being directly studied for the purposes of the review; therefore, ethics approval and consent to participate is not applicable. REGISTRATION AND STATUS: PROSPERO 2018 CRD42018116093.

The experiences of social and community participation of people with non-traumatic spinal cord injury.

BACKGROUND/AIM: Incidence of non-traumatic spinal cord injury in Australia is increasing, which will result in more occupational therapists being involved in the rehabilitation of this group in the future. The profile of people with non-traumatic spinal cord injury differs from people with traumatically acquired spinal cord injuries, and their long-term health and well-being outcomes are not known. The aim of this study was to explore the experience of returning to social and community participation following non-traumatic spinal cord injury. METHODS: Qualitative methods were used for this study. Semi-structured interviews were conducted with seventeen people with non-traumatic spinal cord injury who had returned home. Data were analysed inductively utilising the thematic analysis method. RESULTS: The process of returning to social and community participation following non-traumatic spinal cord injury was identified as occurring in three main stages: withdrawal; re-emergence into society; and stability. Each stage consisted of adjustment and adaptation in a number of areas, including: the loss of independence; the experience of being out in public; social networks; participation in productivity roles; and expectations regarding satisfactory social and community participation. Many of the participants had developed or were developing strategies to adapt to the changes experienced in these stages. CONCLUSION: By using a qualitative approach, this study adds to the understanding of the adjustment process experienced by people following non-traumatic spinal cord injury when they return to living in the community. Although findings parallel those of studies conducted with people with TSCI, there are some differences that may warrant alternative approaches from occupational therapists working with people with NTSCI. Such approaches include assisting people with NTSCI to modify their expectations regarding how they will participate in the community, assisting them to find new meaningful roles, and facilitating the development of new social networks to replace lost ones.

Assistive technology and people: a position paper from the first global research, innovation and education on assistive technology (GREAT) summit.

Assistive technology (AT) is a powerful enabler of participation. The World Health Organization's Global Collaboration on Assistive Technology (GATE) programme is actively working towards access to assistive technology for all. Developed through collaborative work as a part of the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit, this position paper provides a "state of the science" view of AT users, conceptualized as "People" within the set of GATE strategic "P"s. People are at the core of policy, products, personnel and provision. AT is an interface between the person and the life they would like to lead. People's preferences, perspectives and goals are fundamental to defining and determining the success of AT. Maximizing the impact of AT in enabling participation requires an individualized and holistic understanding of the value and meaning of AT for the individual, taking a universal model perspective, focusing on the person, in context, and then considering the condition and/or the technology. This paper aims to situate and emphasize people at the centre of AT systems: we highlight personal meanings and perspectives on AT use and consider the role of advocacy, empowerment and co-design in developing and driving AT processes.

Impact of adjusting for inter-rater variability in conference abstract ranking and selection processes.

BACKGROUND/AIM: Scientific conferences provide a forum for clinicians, educators, students and researchers to share research findings. To be selected to present at a scientific conference, authors must submit a short abstract which is then rated on its scientific quality and professional merit and is accepted or rejected based on these ratings. Previous research has indicated that inter-rater variability can have a substantial impact on abstract selection decisions. For their 2015 conference, the Occupational Therapy Australia National Conference introduced a system to identify and adjust for inter-rater variability in the abstract ranking and selection process. METHOD: Ratings for 1340 abstracts submitted for the 2015 and 2017 conferences were analysed using many-faceted Rasch analysis to identify and adjust for inter-rater variability. Analyses of the construct validity of the abstract rating instrument and rater consistency were completed. To quantify the influence of inter-rater variability of abstract selection decisions, comparisons were made between decisions made using Rasch-calibrated measure scores and decisions that would have been made based purely on raw average scores derived from the abstract ratings. RESULTS: Construct validity and measurement properties of the abstract rating tool were good to excellent (item fit MnSq scores ranged from 0.8 to 1.2; item reliability index = 1.0). Most raters (24 of 27, 89%) were consistent in their use of the rating instrument. When comparing abstract allocations under the two conditions, 25% of abstracts (n = 341) would have been allocated differently if inter-rater variability was not accounted for. CONCLUSION: This study demonstrates that, even with a strong abstract rating instrument and a small rater pool, inter-rater variability still exerts a substantial influence on abstract selection decisions. It is recommended that all occupational therapy conferences internationally, and scientific conferences more generally, adopt systems to identify and adjust for the impact of inter-rater variability in abstract selection processes.

A systematically structured review of biomarkers of dying in cancer patients in the last months of life; An exploration of the biology of dying.

BACKGROUND: The Neuberger review made a number of recommendations to improve end of life care, including research into the biology of dying. An important aspect of the biology of dying is the identification of biomarkers as indices of disease processes. Biomarkers have the potential to inform the current, limited understanding of the dying process and assist clinicians in recognising dying, in particular how to distinguish dying from reversible acute deterioration. OBJECTIVES: To critically appraise the literature on biological factors that may be used as prognostic indicators in advanced cancer patients and to identify candidate biomarkers of the dying process that can be measured serially in cancer patients' bodily fluids. METHODS: A systematically structured review was conducted using three electronic databases. A hand search of six peer-reviewed journals and conference abstracts was also conducted. Studies reporting prognostic biomarkers in cancer patients with a median survival of ≤90 days and post-mortem studies were included. Final levels of evidence and recommendations were made using the Evidence Based Medicine modified GRADE system. RESULTS: 30 articles were included. Seven prognostic biological factors demonstrated Grade A evidence (lymphocyte count, white blood cell count, serum C-reactive protein, albumin, sodium, urea and alkaline phosphatase). An additional eleven prognostic factors were identified with Grade B evidence (platelet count, international normalised ratio, serum vitamin B12, prealbumin, bilirubin, cholesterol, aspartate aminotransferase, alanine transaminase, lactate dehydrogenase, pseudocholinesterase and urate). A number of biomarkers were specifically identified in the last two weeks of life but limitations exist. No post-mortem studies met the inclusion criteria. CONCLUSION: The biology of dying is an important area for future research, with the evidence focused on signs, symptoms and prognostic factors. This review identifies a number of common themes shared amongst advanced cancer patients and highlights candidate biomarkers which may be indicative of a common biological process to dying.

Sharing a Personal Trainer: Personal and Social Benefits of Individualized, Small-Group Training.

Wayment, HA and McDonald, RL. Sharing a personal trainer: personal and social benefits of individualized, small-group training. J Strength Cond Res 31(11): 3137-3145, 2017-We examined a novel personal fitness training program that combines personal training principles in a small-group training environment. In a typical training session, exercisers warm-up together but receive individualized training for 50 minutes with 1-5 other adults who range in age, exercise experience, and goals for participation. Study participants were 98 regularly exercising adult members of a fitness studio in the southwestern United States (64 women and 32 men), aged 19-78 years (mean, 46.52 years; SD = 14.15). Average membership time was 2 years (range, 1-75 months; mean, 23.54 months; SD = 20.10). In collaboration with the program directors, we developed a scale to assess satisfaction with key features of this unique training program. Participants completed an online survey in Fall 2015. Hypotheses were tested with a serial mediator model (model 6) using the SPSS PROCESS module. In support of the basic tenets of self-determination theory, satisfaction with small-group, individualized training supported basic psychological needs, which in turn were associated with greater autonomous exercise motivation and life satisfaction. Satisfaction with this unique training method was also associated with greater exercise self-efficacy. Autonomous exercise motivation was associated with both exercise self-efficacy and greater self-reported health and energy. Discussion focuses on why exercise programs that foster a sense of social belonging (in addition to motivation and efficacy) may be helpful for successful adherence to an exercise program.