Incidence and prevalence of juvenile idiopathic arthritis in the United Kingdom, 2000-2018: results from the Clinical Practice Research Datalink.

OBJECTIVE: The incidence and prevalence of JIA was last estimated in the UK in 1994. Since then the disease has been reclassified, the specialty of paediatric rheumatology has evolved and there has been a significant shift in disease management with new advanced therapies. This study aimed to provide up-to-date national estimates of this disease. METHODS: Children and young people (CYP) with JIA were identified in the Clinical Practice Research Datalink (CPRD) GOLD and Aurum databases, which source data from the two most commonly used primary care electronic health record systems in the UK. These databases were combined and the cohort was identified (2000-18) using predefined code lists. Validation was performed through linkage to the England Hospital Episode Statistics. Annual incidence and prevalence rates were calculated and stratified by gender, age group and nation of the UK. Direct standardization to the UK population was performed and 5 year incidence rates were calculated between 2003 and 2018. RESULTS: The age-standardized incidence rate was 5.61 per 100 000 population. The age-standardized prevalence rate in 2018 was 43.5 per 100 000. Rates were higher in Scotland compared with England: incidence rate ratio 1.27 (95% CI 1.11, 1.46). The 5 year incidence rates did not change significantly over time. CONCLUSIONS: This study has provided the first contemporaneous estimates of occurrence of JIA in the UK in 25 years. These data provide important estimates to inform resource allocation and health service development for management of JIA

Continuing specialist care into adulthood in young people with juvenile idiopathic arthritis: a retrospective cohort study using electronic health records in England.

OBJECTIVES: This study aimed to measure (1) the proportion of children who continue to receive specialist care (rheumatology/ophthalmology) as adults, (2) the characteristics associated with continuing specialist care, and (3) the frequency of specialist care appointments in both paediatric and adult services. METHODS: A retrospective cohort of young people with JIA was identified from UK primary care electronic health records (Clinical Practice Research Datalink) between 1 April 2003 and 31 December 2018. To be included in the study, cases needed to have at least 1 year of registration at their general practice beyond age 18 and linkage to Hospital Episodes Statistics data for secondary care information. All specialist care outpatient visits were identified from Hospital Episodes Statistics outpatient data. RESULTS: There were 666 young people included in the study. Of these, 427 (64%) received specialist care beyond age 18, 90 (13%) had their last recorded contact at 16-17 years and 149 (22%) did not continue after 16 years. Older age at diagnosis, female gender, less deprivation and a childhood diagnosis of uveitis were associated with continuing specialist care beyond age 18. Of those continuing beyond 18, 35% (n = 153) were subsequently discharged by the study end date. Of all those discharged, 32% had a missed appointment recorded after the last attended visit, suggesting failure to attend. CONCLUSIONS: Two-thirds of young people with JIA continue to receive specialist care beyond age 18. This is useful information for children and young people with JIA and their families planning for their future, and for clinicians planning health-care services

Safety and tolerability of Tilt Testing and Carotid Sinus Massage in the octogenarians

OBJECTIVE: to evaluate the safety and tolerability of Tilt Testing (TT) and Carotid Sinus Massage (CSM) in octogenarians with unexplained syncope. METHODS: patients consecutively referred for transient loss of consciousness to the 'Syncope Units' of three hospitals were enrolled. TT and CSM were performed according to the European Society of Cardiology guidelines on syncope. Complications were evaluated in each group. An early interruption of TT was defined as 'intolerance' and considered as a non-diagnostic response. RESULTS: one thousand four hundred and one patients were enrolled (mean age 72 \ub1 16 years, male 40.8%). Six hundred and ninety-four patients (49.5%) were 80 years old or older (mean age 83 \ub1 3 years) and 707 (50.5%) were younger (mean age 60 \ub1 17 years). Complications after TT occurred in 4.5% of older patients and in 2.1% of the younger ones (P = 0.01). All complications were 'minor/moderate', as prolonged hypotension, observed in 3c3% of patients 6580 years. Major complications such as sustained ventricular tachycardia, ventricular fibrillation, asystole requiring cardiac massage, transient ischaemic attack, stroke and death were not observed in any patient. The presence of orthostatic hypotension and the mean number of syncopal episodes were predictors of TT complications. Intolerance was reported in 2.4% of older patients and 1% of the younger ones (P = 0.08), mainly due to orthostatic intolerance. No complications occurred after CSM. CONCLUSIONS: TT and CSM appear to be safe and well tolerated in octogenarians, who should not be excluded by age from the diagnostic work-up of syncope

'Ready to hit the ground running': alumni and employer accounts of a unique part-time distance learning pre-registration nurse education programme

Background This study explored the impact of The Open University’s (OU) pre-registration nursing programme on students’ employability, career progression and its contribution to developing the nursing workforce across the United Kingdom. Designed for healthcare support workers who are sponsored by their employers, the programme is the only part-time supported open/distance learning programme in the UK leading to registration as a nurse. The international literature reveals that relatively little is known about the impact of previous experience as a healthcare support worker on the experience of transition, employability skills and career progression. Objectives To identify alumni and employer views of the perceived impact of the programme on employability, career progression and workforce development. Design/Method A qualitative design using telephone interviews which were digitally recorded, transcribed verbatim prior to content analysis to identify recurrent themes. Settings Three geographical areas across the UK. Participants Alumni (n=17) and employers (n=7). Inclusion criterion for alumni was a minimum of two years post-qualifying experience. Inclusion criteria for employers were those that had responsibility for sponsoring students on the programme and employing them as newly qualified nurses. Results Four overarching themes were identified: Transition, Expectations, Learning for and in practice, and Flexibility. Conclusions Alumni and employers were of the view that the programme equipped them well to meet the competencies and expectations of being a newly qualified nurse. It provided employers with a flexible route to growing their own workforce and alumni the opportunity to achieve their ambition of becoming a qualified nurse when other more conventional routes would not have been open to them. Some of them had already demonstrated career progression. Generalising results requires caution due to the small, self-selecting sample but findings suggest that a widening participation model of pre-registration nurse education for employed healthcare support workers more than adequately prepares them for the realities of professional practice

Experiences of employment amongst young people with juvenile idiopathic arthritis: a qualitative study

Purpose: This study explored expectations and experiences of employment amongst young people with JIAjuvenile idiopathic arthritis, and the role of health professionals in promoting positive employment outcomes. Methods: Semi-structured interviews (n=13) and three focus groups (n=9,n=4,n=3) were conducted with young people (16-25y) and adults (26-31y) with juvenile idiopathic arthritis JIA and semi-structured interviews (n=9) were conducted with health professionals. Transcripts were analysed thematically. Results: Young people with juvenile idiopathic arthritisJIA have concerns about employers’ attitudes towards employees with long-term health conditions and lack knowledge of antidiscrimination legislation. Young people not in education, employment or training identify arthritisJIA as a key barrier. Challenges associated with JIA arthritis (e.g. pain, psychological distress) may not be visible to employers. Decisions about disclosing arthritisJIA are challenging and cause anxiety. Young people associate good disease management and access to flexible and convenient care with their capacity to succeed in employment. Psycho-social and vocational interventions have benefited some young people, but are not routinely available. Conclusions: Low expectations of employers may affect young people’s decisions about disclosure and seeking appropriate support in the work place. Health professionals can equip young people with knowledge and skills to negotiate appropriate support, through signposting to Young people, employment and arthritis. 2 anti-discrimination information and offering practice of transferable skills such as disclosure in consultations

Quality standards for the management of alcohol-related liver disease: consensus recommendations from the British Association for the Study of the Liver and British Society of Gastroenterology ARLD special interest group

Objective Alcohol-related liver disease (ALD) is the most common cause of liver-related ill health and liver-related deaths in the UK, and deaths from ALD have doubled in the last decade. The management of ALD requires treatment of both liver disease and alcohol use; this necessitates effective and constructive multidisciplinary working. To support this, we have developed quality standard recommendations for the management of ALD, based on evidence and consensus expert opinion, with the aim of improving patient care.Design A multidisciplinary group of experts from the British Association for the Study of the Liver and British Society of Gastroenterology ALD Special Interest Group developed the quality standards, with input from the British Liver Trust and patient representatives.Results The standards cover three broad themes: the recognition and diagnosis of people with ALD in primary care and the liver outpatient clinic; the management of acutely decompensated ALD including acute alcohol-related hepatitis and the posthospital care of people with advanced liver disease due to ALD. Draft quality standards were initially developed by smaller working groups and then an anonymous modified Delphi voting process was conducted by the entire group to assess the level of agreement with each statement. Statements were included when agreement was 85% or greater. Twenty-four quality standards were produced from this process which support best practice. From the final list of statements, a smaller number of auditable key performance indicators were selected to allow services to benchmark their practice and an audit tool provided.Conclusion It is hoped that services will review their practice against these recommendations and key performance indicators and institute service development where needed to improve the care of patients with ALD

Predictors of Time to Death After Terminal Withdrawal of Mechanical Ventilation in the ICU

Little information exists about the expected time to death after terminal withdrawal of mechanical ventilation. We sought to determine the independent predictors of time to death after withdrawal of mechanical ventilation. METHODS: We conducted a secondary analysis from a cluster randomized trial of an end-of-life care intervention. We studied 1,505 adult patients in 14 hospitals in Washington State who died within or shortly after discharge from an ICU following terminal withdrawal of mechanical ventilation (August 2003 to February 2008). Time to death and its predictors were abstracted from the patients' charts and death certificates. Predictors included demographics, proxies of severity of illness, life-sustaining therapies, and International Classification of Diseases, 9th ed., Clinical Modification codes. RESULTS: The median (interquartile range [IQR]) age of the cohort was 71 years (58-80 years), and 44% were women. The median (IQR) time to death after withdrawal of ventilation was 0.93 hours (0.25-5.5 hours). Using Cox regression, the independent predictors of a shorter time to death were nonwhite race (hazard ratio [HR], 1.17; 95% CI, 1.01-1.35), number of organ failures (per-organ HR, 1.11; 95% CI, 1.04-1.19), vasopressors (HR, 1.67; 95% CI, 1.49-1.88), IV fluids (HR, 1.16; 95% CI, 1.01-1.32), and surgical vs medical service (HR, 1.29; 95% CI, 1.06-1.56). Predictors of longer time to death were older age (per-decade HR, 0.95; 95% CI, 0.90-0.99) and female sex (HR, 0.86; 95% CI, 0.77-0.97). CONCLUSIONS: Time to death after withdrawal of mechanical ventilation varies widely, yet the majority of patients die within 24 hours. Subsequent validation of these predictors may help to inform family counseling at the end of life.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/85787/1/Cooke - Predictors of time to death after withdrawal.pd

Sustainable Rural Tourism: Lessons for Rural Development

Rural areas are recognised for their complex, multifunctional capacities with a range of different interest groups claiming their rights to, and use of, different rural spaces. The current rural development paradigm that is evident across the globe is epitomised by the European LEADER approach. Using evidence from the proposed National Park in Northern Ireland, we ask the question: what is the potential for sustainable rural tourism to contribute to rural development? In our analysis we consider the scope for adaptive tourism to overcome some of the ongoing challenges that have been identified in the LEADER approach. Four themes are revealed from this analysis: institutional (in)capacity, legitimacy of local groups, navigating between stakeholder interests and sustainable tourism in practice. These issues, discussed in turn, have clear implications for the new rural development programme

Sustainable rural tourism: lessons for rural development

Rural areas are recognised for their complex, multifunctional capacities with a range of different interest groups claiming their rights to, and use of, different rural spaces. The current rural development paradigm that is evident across the globe is epitomised by the European LEADER approach. Using evidence from the proposed National Park in Northern Ireland, we ask the question: what is the potential for sustainable rural tourism to contribute to rural development? In our analysis we consider the scope for adaptive tourism to overcome some of the ongoing challenges that have been identified in the LEADER approach. Four themes are revealed from this analysis: institutional (in)capacity, legitimacy of local groups, navigating between stakeholder interests and sustainable tourism in practice. These issues, discussed in turn, have clear implications for the new rural development programme