A scoping review of the evidence for the use of screening tools in people with intellectual disabilities with dysphagia.

BACKGROUND: Dysphagia can have serious health implications including choking and respiratory infection leading to poorer quality of life. People with intellectual disabilities are at higher risk of dysphagia related health complications and early death. Robust dysphagia screening tools are vital for this population. METHOD: A scoping review and appraisal of the evidence for dysphagia and feeding screening tools for use with people with intellectual disabilities was undertaken. RESULTS: Seven studies (using six screening tools) met the review inclusion criteria. Mostly studies were limited by no defined dysphagia criteria, no verification of tools with a gold reference standard (e.g., videofluoroscopic examination) and lack of participant diversity (small samples, narrow age range, severity of intellectual disability or limited settings). CONCLUSIONS: There is urgent need for development and rigorous appraisal of existing dysphagia screening tools to meet the needs of a wider range of people with intellectual disabilities (particularly mild-to-moderate severity) and in wider settings.

Exploring nurses' online perspectives and social networks during a global pandemic COVID-19.

OBJECTIVES: Examine the online interactions, social networks, and perspectives of nursing actors on COVID-19 from conversations on Twitter to understand how the profession responded to this global pandemic. DESIGN: Mixed methods. SAMPLE: Ten-thousand five-hundred and seventy-four tweets by 2790 individuals and organizations. MEASUREMENTS: NodeXL software was used for social network analysis to produce a network visualization. The betweenness centrality algorithm identified key users who were influential in COVID-19 related conversations on Twitter. Inductive content analysis enabled exploration of tweet content. A communicative figurations framework guided the study. RESULTS: Nursing actors formed different social groupings, and communicated with one another across groups. Tweets covered four themes; (1) outbreak and clinical management of the infectious disease, (2) education and information sharing, (3) social, economic, and political context, and (4) working together and supporting each other. CONCLUSION: In addition to spreading knowledge, nurses tried to reach out through social media to political and healthcare leaders to advocate for improvements needed to address COVID-19. However, they primarily conversed within their own professional community. Action is needed to better understand how social media is and can be used by nurses for health communication, and to improve their preparedness to be influential on social media beyond the nursing community.

Healthy lifestyle behaviours for people with intellectual disabilities: An exploration of organizational barriers and enablers.

BACKGROUND: The health-related behaviours of people with intellectual disabilities may be determined by organisational influences. This innovative study aimed to explore managers' and staffs' perspectives on organisational influences on the promotion of healthy behaviours for this population. METHOD: A qualitative methodology was employed. Four focus groups with staff and eleven telephone interviews with managers were undertaken across three residential services in one region (Northern Ireland) of the UK. Transcripts were analysed thematically. FINDINGS: The organisations involved in this study did not have the cultural ethos or capacity to sustain consistent support for staff involvement in health promotion. Organisational support and outcome-focused strategies are recommended for encouraging staff involvement in health promotion activities. CONCLUSION: These findings have implications for some organisations that support people with intellectual disabilities in improving the way they facilitate health promotion. They highlight the need for organisational cultures to facilitate knowledge translation and embrace evidence-based health promotion interventions.

Early death and causes of death of people with Down syndrome: A systematic review.

BACKGROUND: It is thought that people with Down syndrome die younger than the general population, but that survival rates are improving. METHODS: Five databases were searched for keywords related to intellectual disabilities, Down syndrome and mortality. Strict inclusion criteria were applied. Information from 34 selected studies was tabulated, extracted and synthesized. RESULTS: People with Down syndrome died about 28 years younger than the general population. Congenital heart anomalies, comorbidities, low birthweight, and Black and minority ethnicity influenced earlier age of death, as did younger maternal age and poorer parental education. Congenital heart anomalies and respiratory conditions were the leading causes of death, and more common than in the general population. Survival rates have improved over time, particularly for those with congenital heart anomalies. CONCLUSIONS: People with Down syndrome are living longer but still die younger of different causes than the general population. More robust comparative data are needed, and ethnic differences require further study.

Early death and causes of death of people with intellectual disabilities: A systematic review.

BACKGROUND: Death of people with intellectual disabilities is considered to be earlier than for the general population. METHODS: Databases were searched for key words on intellectual disabilities and death. Strict inclusion/exclusion criteria were used. Information was extracted from selected papers, tabulated and synthesized. Prospero registration number: CRD42015020161. RESULTS: Of 19,111 retrieved articles, 27 met criteria. Death was earlier by 20 years. It has improved in recent decades; however, the same inequality gap with the general population remains. More severe intellectual disabilities, and/or additional comorbidities rendered it shortest. Standardized mortality rates showed a greater inequality for women than men. Respiratory disease and circulatory diseases (with greater congenital and lesser ischaemic disease compared with the general population) were the main causes of death. Cancer was less common, and cancer profile differed from the general population. Some deaths are potentially avoidable. All research is from high-income countries, and cause of death is surprisingly little investigated. CONCLUSIONS: Improved health care, including anticipatory care such as health checks, and initiatives addressing most relevant lifestyle behaviours and health risks are indicated.

The health role of local area coordinators in Scotland: a mixed methods study.

The study set out to explore whether local area coordinators (LACs) and their managers view the health role of LACs as an essential component of their work and identify the health-related activities undertaken by LACs in Scotland. A mixed methods cross-sectional phenomenological study involving local authority service managers (n = 25) and LACs (n = 40) was adopted. Quantitative data from LACs were obtained using online and postal questionnaires. Qualitative data from local authority service managers and LACs were collected using one-to-one interviews and focus groups. Thematic analysis was undertaken of the qualitative data. The results indicate that there is a need to develop further the wider public health role of LACs to incorporate health-related activities focused on broader community-based outcomes such as empowerment and community integration. By adopting a public health role, LACs will be able to contribute to the reduction of health inequalities in people with learning disabilities.

The core content of emergency medical services medicine.

On September 23, 2010, the American Board of Medical Specialties (ABMS) approved emergency medical services (EMS) as a subspecialty of emergency medicine. As a result, the American Board of Emergency Medicine (ABEM) is planning to award the first certificates in EMS medicine in the fall of 2013. The purpose of subspecialty certification in EMS, as defined by ABEM, is to standardize physician training and qualifications for EMS practice, to improve patient safety and enhance the quality of emergency medical care provided to patients in the prehospital environment, and to facilitate integration of prehospital patient treatment into the continuum of patient care. In February 2011, ABEM established the EMS Examination Task Force to develop the Core Content of EMS Medicine (Core Content) that would be used to define the subspecialty and from which questions would be written for the examinations, to develop a blueprint for the examinations, and to develop a bank of test questions for use on the examinations. The Core Content defines the training parameters, resources, and knowledge of the treatment of prehospital patients necessary to practice EMS medicine. Additionally, it is intended to inform fellowship directors and candidates for certification of the full range of content that might appear on the examinations. This article describes the development of the Core Content and presents the Core Content in its entirety.

Recruitment settings, delivery contexts, intervention techniques and outcomes of health promotion programmes for young adults with intellectual and developmental disabilities: A systematic review.

BACKGROUND: People with intellectual and developmental disabilities (IDD) are at risk of developing long term health conditions, and a preventative health agenda research is emerging. However, little is known about the recruitment settings, delivery contexts, intervention techniques and outcomes of health promotion programmes for this population. Therefore, the aim of this review was to synthesize and evaluate these characteristics. METHOD: A systematic review of studies identified from multiple databases on healthy lifestyle interventions for adolescents and young people with IDD was conducted. Data were synthesized and evaluated using a logic model. Quality of rigour was also assessed. RESULTS: Sixteen geographically diverse studies were selected and evaluated. Participants were most commonly recruited from schools, with interventions typically taking place in a gym setting and involving physical activity training. CONCLUSIONS: This review indicates that physical activity and dietary interventions in people with IDD may lead to lifestyle changes, however more robust evidence is required. Educational settings are conducive, with settings beyond schools requiring further consideration.

Birth incidence, deaths and hospitalisations of children and young people with Down syndrome, 1990-2015: birth cohort study.

OBJECTIVE: To investigate current Down syndrome live birth and death rates, and childhood hospitalisations, compared with peers. SETTING: General community. PARTICIPANTS: All live births with Down syndrome, 1990-2015, identified via Scottish regional cytogenetic laboratories, each age-sex-neighbourhood deprivation matched with five non-Down syndrome controls. Record linkage to Scotland's hospital admissions and death data. PRIMARY OUTCOME: HRs comparing risk of first hospitalisation (any and emergency), readmission for children with Down syndrome and matched controls were calculated using stratified Cox proportional hazards (PH) model, and length of hospital stay was calculated using a conditional log-linear regression model. RESULTS: 689/1479 (46.6%) female and 769/1479 (51.9%) male children/young people with Down syndrome were identified (1.0/1000 births, with no reduction over time); 1235 were matched. 92/1235 (7.4%) died during the period, 18.5 times more than controls. More of the Down syndrome group had at least one admission (incidence rate ratio(IRR) 72.89 (68.72-77.32) vs 40.51 (39.15-41.92); adjusted HR=1.84 (1.68, 2.01)) and readmissions (IRR 54.85 (51.46-58.46) vs 15.06 (14.36-15.80); adjusted HR=2.56 (2.08, 3.14)). More of their admissions were emergencies (IRR 56.78 (53.13-60.72) vs 28.88 (27.73-30.07); first emergency admission adjusted HR=2.87 (2.61, 3.15)). Children with Down syndrome had 28% longer first admission after birth. Admission rate increased from 1990-2003 to 2004-2014 for the Down syndrome group (from 90.7% to 92.2%) and decreased for controls (from 63.3% to 44.8%). CONCLUSIONS: We provide contemporaneous statistics on the live birth rate of babies with Down syndrome, and their childhood death rate. They require more hospital admissions, readmissions emergency admissions and longer lengths of stays than their peers, which has received scant research attention in the past. This demonstrates the importance of statutory planning as well as informal support to families to avoid added problems in child development and family bonding over and above that brought by the intellectual disabilities associated with Down syndrome.

Expanding the reach of health sciences education and empowering others: the OpenCourseWare initiative at Tufts University.

OpenCourseWare (OCW) represents an innovative and cost-effective opportunity for institutions to take a more active role in strengthening health sciences education worldwide. OCW content can provide a supplement to curricula available in resource-rich settings, as well as provide much of the basic content critical to teaching and research in resource-limited health education environments. Educational institutions worldwide have the opportunity to explore how OCW and other open tools and materials can supplement efforts to build health education capacity to address global shortages of healthcare workers. Tufts University has worked to leverage open, digital resources to support medical education since 1994 with the creation of the Tufts University Sciences Knowledgebase (TUSK). This experience has yielded vital lessons for institutions interested in OCW, including: effectively motivating faculty participation; managing the inherent complexity of open publishing of health sciences content due to its rapidly evolving nature and reliance on copyrighted materials; generating support through internal and external communication throughout the process; and creating institutional systems that ensure the long-term sustainability of OCW initiatives.

Electroglottographic analysis of valved speech following total laryngectomy.

Twenty-seven total laryngectomy patients (19 males and 8 females) and 18 normal control subjects (10 males and 8 females) were subjected to electroglottography-based single voice recordings using sustained vowels and connected speech. The results showed poorer values and larger variability for all the voice measures for the total laryngectomy patients (TO speech) as compared to that of normal subjects. There were statistically significant differences (p<0.05) for all study parameters between the TO and normal speech. This study shows that robust and reliable data can be obtained using electroglottography in laryngectomees with both a sustained vowel and connected speech. Using these parameters, TO speech is significantly different from normal speech and is highly variable. This methodology has enormous potential for further investigations in laryngectomees and other patients with head and neck cancer.