Research priorities relating to the debate on assisted dying: what do we still need to know? : Results of a modified Delphi technique

Objective To identify the main areas of uncertainty and subsequent research priorities to inform the ongoing debate around assisted dying. Design Two-round electronic modified Delphi consultation with experts and interested bodies. Setting and participants 110 groups and individuals interested in the subject of end of life care and/or assisted dying were approached to participate. Respondents included health and social care professionals, researchers, campaigners, patients, and carers predominately based in the UK. In the first round, the respondents were asked to propose high-priority research questions related to the topic of assisted dying. The collected research questions were then de-duplicated and presented to all respondents in a second round in which they could rate each question in terms of importance. Results 24% and 26% of participants responded to the first and second rounds respectively. Respondents suggested 85 unique research questions in the first round. These were grouped by theme and rated in terms of importance in the second round. Emergent themes were: Palliative care/symptom control; patient characteristics, experiences and decisions; families and carers; society and the general public; arguments for and against assisted dying; international experiences /analysis of existing national data; suicide; mental health, psychological and psychosocial considerations; comorbidities; the role of clinicians; environment and external influences; broader topics incorporating assisted dying; and moral, ethical and legal issues. Ten of the 85 proposed questions were rated as being important (≥7/10) by at least 50% of respondents. Conclusions Research questions with the highest levels of consensus were predominately concerned with understanding how and why people make end-of-life decisions, and which factors influence those decisions. Dissemination of these findings alongside a focused examination of the existing literature may be the most effective way to add evidence to the ongoing debate around assisted dying

Experiences, practices and barriers to accessing health information : a qualitative study

Abstract Background: With technology advancements making vast amounts of health information available whenever and wherever it is required, there is a growing need to understand how this information is being accessed and used. Objective: Our aim was to explore patients/public and health professionals’ experiences, practices and preferences for accessing health information. Methods: Focus groups were conducted with 35 healthcare professionals (31 nurses and 4 allied health professionals) and 14 patients/members of the public. Semi-structured interviews were conducted with 5 consultants, who were unable to attend the focus groups. Data collection took place between March and May 2013 and all data were analysed thematically. Results: Health professionals and patients/members of the public reported primarily accessing health information to inform their decision making for providing and seeking treatment respectively. For all participants the internet wasthe primary mechanism for accessing health information, with health professionals’access affected by open access charges; time constraints and access to computers.Variation in how patients/members of the public and health professionals appraisethe quality of information also emerged, with a range of techniques for assessingquality reported. Conclusions: There was a clear preference for accessing health information onlinewithin our sample. Given that this information is central to both patient and healthprofessionals’ decision making, it is essential that these individuals are basing theirdecisions on high quality information. Findings from this study have implications for educationalists, health professionals, policymakers and the public. Keywords: Information; Information Technology; Health information; e-health: Qualitative researc

Implementing mental health training programmes for non-mental health trained professionals : a qualitative synthesis

Introduction Given the prevalence of mental health problems globally, there is an increasing need for the police and other non-mental health trained professionals to identify and manage situations involving individuals with mental health problems. The review aimed to identify and explore qualitative evidence on views and experiences of non-mental health professionals receiving mental health training and the barriers and facilitators to training delivery and implementation. Methods A meta-synthesis of qualitative evidence on the barriers, facilitators and perceived impact of mental health training programmes for non-mental health trained professionals. Systematic literature searches were undertaken of the following databases: Criminal Justice Abstracts (CJA); MEDLINE; Embase; PsycINFO; ASSIA; CENTRAL; SSCI; ERIC; Campbell Library;Social Care Online and EPOC from 1995 to 2016. Records were independently screened for eligibility by two researchers, data extraction and quality appraisal of studies was also undertaken independently by two researchers. The CASP tool was used to quality appraise included studies. Included studies were synthesised using a meta-ethnographic approach as outlined by Noblit and Hare. Results 10,282 records were identified and eight qualitative studies were included. A range of barriers and facilitators to training were identified and related to the delivery and content of training; the use of additional resources; and staff willingness to engage with training and organisational factors. The perceived impact of training was also discussed in terms of how it affects trainees; perceptions of mental health; self-perception; responses to situations involving mental health and the potential of training to reduce injury or physical harm in situations involving mental health. The value of training and how to measure its impact were also discussed. Conclusion Findings from this review have implications for those designing, implementing and evaluating mental health training programmes. It is recommended that research evaluating mental health training includes a qualitative component to ensure that the barriers and facilitators to training and its impact on trainees’ perceptions of mental health are understood. Protocol registration number: PROSPERO: CRD4201501598

Interagency collaboration models for people with mental ill health in contact with the police: a systematic scoping review

Objective: To identify existing evidence on inter-agency collaboration between law enforcement, emergency services, statutory services and third sector agencies regarding people with mental ill-health. Design: Systematic scoping review. Scoping reviews map particular research areas to identify research gaps. Data sources and eligibility: ASSIA, CENTRAL, the Cochrane Library databases, Criminal Justice Abstracts, ERIC, Embase, MEDLINE, PsycINFO, PROSPERO and Social Care Online and Social Sciences Citation Index, were searched up to 2017, as were grey literature and hand searches. Eligible articles were empirical evaluations or descriptions of models of inter-agency collaboration between the police and other agencies. Study appraisal and synthesis: Screening and data extraction were undertaken independently by two researchers. Arksey’s framework was used to collate and map included studies. Results: One hundred and twenty-five studies were included. The majority of articles were of descriptions of models (28%), mixed methods evaluations of models (18%) and single service evaluations (14%). The most frequently reported outcomes (52%) were ‘organisational or service level outcomes’ (e.g. arrest rates). Most articles (53%) focused on adults with mental ill-health, whilst others focused on adult offenders with mental ill-health (17.4%). Thirteen models of inter-agency collaboration were described, each involving between 2-13 agencies. Frequently reported models were ‘pre-arrest diversion’ of people with mental ill-health (34%), ‘co-response’ involving joint response by police officers paired with mental health professionals (28.6%) and ‘jail diversion’ following arrest (23.8%). Conclusions: We identified 13 different inter-agency collaboration models catering for a range of mental health related interactions. All but one of these models involved the police and mental health services or professionals. Several models have sufficient literature to warrant full systematic reviews of their effectiveness, while others need robust evaluation, by RCT where appropriate. Future evaluations should focus on health related outcomes and the impact on key stakeholders

Systematic review of the evidence on orthotic devices for the management of knee instability related to neuromuscular and central nervous system disorders

Objectives To assess the effectiveness of orthotic devices for the management of instability of the knee in adults with a neuromuscular disorder or central nervous system disorder. Design A systematic review of primary studies. Setting Community. Participants Adults with a neuromuscular disorder or central nervous system disorder and impaired walking ability due to instability of the knee. Interventions Orthoses with the clinical aim of controlling knee instability, for example, knee-ankle-foot orthoses, ankle-foot orthoses and knee orthoses or mixed design with no restrictions in design or material. Primary and secondary outcome measures Conditionspecific or generic patient-reported outcome measures assessing function, disability, independence, activities of daily living, quality of life or psychosocial outcomes; pain; walking ability; functional assessments; biomechanical analysis; adverse effects; usage; patient satisfaction and the acceptability of a device; and resource utilisation data. Results Twenty-one studies including 478 patients were included. Orthotic devices were evaluated in patients with postpolio syndrome, poststroke syndrome, inclusion body myositis and spinal cord injury. The review included 2 randomised controlled trials (RCTs), 3 non-randomised controlled studies and 16 case series. Most were small, single-centre studies with only 6 of 21 following patients for 1 year or longer. They met between one and five of nine quality criteria and reported methods and results poorly. They mainly assessed outcomes related to gait analysis and energy consumption with limited use of standardised, validated, patient-reported outcome measures. There was an absence of evidence on outcomes of direct importance to patients such as reduction in pain and falls. Conclusions There is a need for high-quality research, particularly RCTs, of orthotic devices for knee instability related to neuromuscular and central nervous system conditions. This research should address outcomes important to patients. There may also be value in developing a national registr

Models of Mental Health Triage for Individuals coming to the Attention of the Police who may be Experiencing Mental Health Crisis : A Scoping Review

Background Police routinely encounter individuals experiencing mental distress, despite being ill-equipped to do so. Mental health triage aims to address these concerns. A range of approaches to triage have been introduced, however no overview exists. Methods We conducted a systematic scoping review of mental health triage co-responding schemes. Eleven databases were searched to identify the literature; each scheme was charted and described. Results Thirty-three studies describing 47 schemes were included. Intervention details were generally poorly reported, however, differences in personnel, training and information sharing were identified. Conclusions There are multiple schemes in practice based on the co-responding model. Robust research into the cost and effectiveness of mental health triage is needed

Effectiveness of surgical fixation for lateral compression type one (LC-1) fragility fractures of the pelvis: a systematic review

Objectives: To undertake a systematic review of the evidence base for the effectiveness of surgical fixation of lateral compression (LC-1) fragility fractures of the pelvis compared to non-surgical approaches. Searches: MEDLINE, EMBASE, the Cochrane Central Register of Controlled Trials (CENTRAL), and two international trials registers were searched up to January 2017 (Medline to February 2019) for studies of internal or external fixation of fragility fractures of the pelvis. Participants: Patients with lateral compression pelvic fractures (LC-1 fractures), sustained as the result of a low energy mechanism, defined as a fall from standing height or less. Interventions: Surgery using either external or internal fixation devices. Conservative non-surgical treatment was the defined comparator. Outcome measures: Outcomes of interest were patient mobility and function, pain, quality of life, fracture union, mortality, hospital length of stay and complications (additional operative procedures, number and type of adverse events and serious adverse events). Quality assessment and synthesis: The Joanna Briggs Institute Checklist for Case Series was used to assess the included studies. Results were presented in a narrative synthesis. Results: Of 3421 records identified, four retrospective case series met the inclusion criteria. Fixation types were not consistent between studies or within studies and most patients had more than one type of pelvic fixation. Where reported, mobility and function improved post-surgery, and a reduction in pain was recorded. Length of hospital stay ranged from four days to 54 days for surgical fixation of any type. Reported complications and adverse outcomes included: infections, implant loosening, pneumonia and thrombosis. Use of analgesia was not reported, Conclusions: There is insufficient evidence to support guidance on the most effective treatment for patients who fail to mobilise after sustaining an LC-1 fragility fracture. Registration: PROSPERO registration number: CRD4201705587

Orthotic management of instability of the knee related to neuromuscular and central nervous system disorders : qualitative interview study of patient perspectives

OBJECTIVES: Adults with knee instability related to neuromuscular disorders or central nervous conditions often experience mobility problems and rely on orthoses to improve function and mobility. Patient views of device effectiveness and acceptability are underexplored. Our study aimed to elicit device users' perspectives regarding fitting, acceptability, effectiveness and use of orthoses, and identify important treatment outcomes. DESIGN: Qualitative descriptive study using in-depth semistructured interviews. Interview transcriptions were coded and thematically analysed, using 'Framework'. SETTING AND PARTICIPANTS: A purposive sample of 24 adult users of orthotic devices. Nineteen patients were recruited across three National Health Service sites, and five people through charities/patient support groups in England. Half of the participants had been diagnosed with poliomyelitis, and the remainder with multiple sclerosis, Charcot-Marie-Tooth disease, spinal injury or spina bifida, and stroke. The median age of participants was 64.5 years (range 36-80 years). RESULTS: Patients' medical condition impacted significantly on daily life. Participants relied on orthotic devices to enable engagement in daily activities. Patient goals for mobility were linked to individual circumstances. Desired treatment outcomes included reduction in pain, trips and falls, with improved balance and stability. Effectiveness, reliability, comfort and durability were the most valued features of orthoses and associated with reported use. Obtaining suitable footwear alongside orthotic devices was a significant concern. Time pressures during device fitting were viewed negatively. CONCLUSIONS: Orthotic devices for knee instability play a crucial role in promoting, maintaining and enhancing physical and psychological health and well-being, enabling patients to work, engage in family life and enjoy social activities. Future research should consider how best to measure the impact of orthotic devices on patient quality of life and daily functioning outside the clinic setting, as well as device use and any adverse effects. TRIAL REGISTRATION NUMBER: This qualitative study was retrospectively registered as Current Controlled Trials ISRCTN65240228

Risk of adverse outcomes among infants of immigrant women according to birth-weight curves tailored to maternal world region of origin

Background: Infants of immigrant women in Western nations generally have lower birth weights than infants of native-born women. Whether this difference is physiologic or pathological is unclear. We determined whether the use of birth-weight curves tailored to maternal world region of origin would discriminate adverse neonatal and obstetric outcomes more accurately than a single birth-weight curve based on infants of Canadian-born women. Methods: We performed a retrospective cohort study of in-hospital singleton live births (328 387 to immigrant women, 761 260 to nonimmigrant women) in Ontario between 2002 and 2012 using population health services data linked to the national immigration database. We classified infants as small for gestational age (\u3c 10th percentile) or large for gestational age (≥ 90th percentile) using both Canadian and world region-specific birthweight curves and compared associations with adverse neonatal and obstetric outcomes. Results: Compared with world region-specific birth-weight curves, the Canadian curve classified 20 431 (6.2%) additional newborns of immigrant women as small for gestational age, of whom 15 467 (75.7%) were of East or South Asian descent. The odds of neonatal death were lower among small-for-gestational-age infants of immigrant women than among those of nonimmigrant women based on the Canadian birth-weight curve (adjusted odds ratio [OR] 0.83, 95% confidence interval [CI] 0.72-0.95), but higher when small for gestational age was defined by the world region- specific curves (adjusted OR 1.24, 95% CI 1.08- 1.42). Conversely, the odds of some adverse outcomes were lower among large-forgestational- age infants of immigrant women than among those of nonimmigrant women based on world region-specific birth-weight curves, but were similar based on the Canadian curve. Interpretation: World region-specific birthweight curves seemed to be more appropriate than a single Canadian population-based curve for assessing the risk of adverse neonatal and obstetric outcomes among small- and large-for-gestational-age infants born to immigrant women, especially those from the East and South Asian regions

Genetic risk and a primary role for cell-mediated immune mechanisms in multiple sclerosis.

Multiple sclerosis is a common disease of the central nervous system in which the interplay between inflammatory and neurodegenerative processes typically results in intermittent neurological disturbance followed by progressive accumulation of disability. Epidemiological studies have shown that genetic factors are primarily responsible for the substantially increased frequency of the disease seen in the relatives of affected individuals, and systematic attempts to identify linkage in multiplex families have confirmed that variation within the major histocompatibility complex (MHC) exerts the greatest individual effect on risk. Modestly powered genome-wide association studies (GWAS) have enabled more than 20 additional risk loci to be identified and have shown that multiple variants exerting modest individual effects have a key role in disease susceptibility. Most of the genetic architecture underlying susceptibility to the disease remains to be defined and is anticipated to require the analysis of sample sizes that are beyond the numbers currently available to individual research groups. In a collaborative GWAS involving 9,772 cases of European descent collected by 23 research groups working in 15 different countries, we have replicated almost all of the previously suggested associations and identified at least a further 29 novel susceptibility loci. Within the MHC we have refined the identity of the HLA-DRB1 risk alleles and confirmed that variation in the HLA-A gene underlies the independent protective effect attributable to the class I region. Immunologically relevant genes are significantly overrepresented among those mapping close to the identified loci and particularly implicate T-helper-cell differentiation in the pathogenesis of multiple sclerosis