Economic burden of Huntington disease in Europe and the USA: Results from the Huntington's Disease Burden of Illness study.

BACKGROUND AND PURPOSE: The prevalence of Huntington disease (HD) has increased over time; however, there is a lack of up-to-date evidence documenting the economic burden of HD by disease stage. This study provides an estimate of the annual direct medical, nonmedical, and indirect costs associated with HD from participants in the Huntington's Disease Burden of Illness (HDBOI) study in five European countries and the USA. METHODS: The HDBOI is a retrospective, cross-sectional study. Data collection was conducted between September 2020 and May 2021. Participants were recruited by their HD-treating physicians and categorized as early stage (ES), mid stage (MS), or advanced stage (AS) HD. Data were collected via three questionnaires: a case report form, completed by physicians who collected health care resource use associated with HD to compute direct medical cost, and optional patient and caregiver questionnaires, which included information used to compute nondirect medical and indirect costs. Country-specific unit cost sources were used. RESULTS: HDBOI cost estimates were €12,663 (n = 2094) for direct medical costs, €2984 (n = 359) for nondirect medical costs, and €47,576 (n = 436) for indirect costs. Costs are higher in patients who are at later stages of disease; for example, direct medical costs estimates were €9220 (n = 846), €11,885 (n = 701), and €18,985 (n = 547) for ES, MS, and AS, respectively. Similar trends were observed for nondirect and indirect costs. Costs show large variations between patients and countries. CONCLUSIONS: Cost estimates from the HDBOI study show that people with HD and their caregivers bear a large economic burden that increases as disease progresses.

A scoping review of clinical skill development of preregistration registered nurses in Australia and five other English-speaking countries.

AIM: The aim of this scoping review is to synthesise current evidence around the clinical skill development of preregistration registered nurses (RNs) in Australia, United Kingdom (UK), Ireland, United States (US), Canada and New Zealand, to inform nurse education, policy and clinical practice. BACKGROUND: Nursing is a practical profession, and registered nurses require specific skills, knowledge and attributes in order to care for patients safely. The context for health care delivery is shifting, and the education of nurses must adapt to effectively equip the registered nurse of the future. DESIGN: A scoping review was conducted of clinical skill development in preregistration nurses. CINAHL Plus, MEDLINE, Health Source (Nursing/Academic edition) and Scopus were searched. Included studies were primary Australian studies and international literature reviews, which focussed on preregistration nursing education. Papers were written in the English language and focussed on clinical skill development. Results were synthesised narratively. The review is reported here in accordance with the Preferred Reporting Items for Systematic Review and Meta-analyses Scoping Review extension (PRISMA-ScR) guidelines. RESULTS: One hundred fifty-five Australia studies and 89 international reviews were included in the review. Six key themes were identified, namely clinical skills, approaches to teaching and learning, interprofessional education, assessment of learning, clinical placement and simulation. CONCLUSION: There is substantial variation in strategies and programmes to facilitate clinical skill development both within Australia and internationally, indicating a genuine shift away from traditional didactic pedagogy. New graduate registered nurses were expected to be "work-ready," albeit at a novice level, when they enter the workplace. Future research should consider measures of impact on actual clinical practice and focus on developing work-ready graduates for the range of clinical settings in which they may practice. Educators, policymakers and educational institutions can use these findings to inform curriculum developments to ensure that clinical skill development is evidence-based.

The LUCID study: living with ulcerative colitis; identifying the socioeconomic burden in Europe.

BACKGROUND: Ulcerative colitis (UC) is an inflammatory bowel disease with increasing prevalence worldwide. Current treatment strategies place considerable economic and humanistic burdens on patients. The aim of this study was to determine the socioeconomic burden of UC in adult patients in European countries in a real-world setting. METHODS: In this retrospective, cross-sectional and observational pan-European study, patients with moderate or severe UC were assigned to ARM 1 and patients who had moderate or severe UC but achieved mild or remission status 12 months before index date (or clinical consultation date), were assigned to ARM 2. Clinical and medical resource use data were collected via electronic case report forms, and data on non-medical and indirect costs, and health-related quality of life (HRQoL) were collected via patient and public involvement and engagement (PPIE) questionnaires. Per-patient annual total costs per ARM and per country were calculated using the collated resource use in the last 12 months (between the start of the documentation period and patient consultation or index date) and country specific unit costs. Quality of life was described by arm and by country. RESULTS: In the physician-reported eCRF population (n = 2966), the mean annual direct medical cost was €4065 in ARM 1 (n = 1835) and €2935 in ARM 2 (n = 1131). In the PPIE population (ARM 1, n = 1001; ARM 2, n = 647), mean annual direct cost was €4526 in ARM 1 and €3057 in ARM 2, mean annual direct non-medical cost was €1162 in ARM 1 and €1002 in ARM 2, mean annual indirect cost was €3098 in ARM 1 and €2309 ARM 2, and mean annual total cost was in €8787 in ARM 1 and €6368 in ARM 2. HRQoL scores showed moderate to high burden of UC in both groups. CONCLUSIONS: The cost and HRQoL burden were high in patients in both ARM 1 and ARM 2 indicating unmet needs in the UC active population.

Lyme disease: recognition and management for emergency nurses.

Over the past ten years there has been a significant rise in the number of people who present to emergency departments with Lyme disease. Although some patients remain asymptomatic many present with a rash around a previous tick bite and others may present with a range of debilitating symptoms that can be problematic if left untreated. Due to the growing prevalence of Lyme disease in the UK and the US this article gives an overview of the vector-borne condition and provides emergency nurses with information about the pathophysiology, prevention, presenting signs and symptoms and management.

The challenges and psychological impact of delivering nursing care within a war zone.

BACKGROUND: Between 2001 and 2014, British military nurses served in Afghanistan caring for both service personnel and local nationals of all ages. However, there have been few research studies assessing the psychological impact of delivering nursing care in a war zone hospital. PURPOSE: The purpose of the study was to explore the challenges and psychological stressors facing military nurses in undertaking their operational role. METHODS: A constructivist grounded theory was used. Semi-structured interviews were conducted with 18 British Armed Forces nurses at Camp Bastion Hospital, Afghanistan, in June to July 2013. DISCUSSION: Military nurses faced prolonged periods of caring for seriously injured polytrauma casualties of all ages, and there were associated distressing psychological effects and prolonged periods of adjustment on returning home. Caring for children was a particular concern. The factors that caused stress, both on deployment and returning home, along with measures to address these issues such as time for rest and exercise, can change rapidly in response to the dynamic flux in clinical intensity common within the deployable environment. CONCLUSION: Clinical training, a good command structure, the requirement for rest, recuperation, exercise, and diet were important in reducing psychological stress within a war zone. No formal debriefing model was advocated for clinical staff who appear to want to discuss traumatic incidents as a group, and this may have contributed to stigma and nurses feeling isolated. On returning home, military nurses reported being disconnected from the civilian wards and departments. The study raised the question of who cares for the carers, as participants reported a perception that others felt that they should be able to cope without any emotional issues. It is envisioned that the results are transferable internationally to nurses from other armed forces and will raise awareness with civilian colleagues.

Accelerated resolution therapy: an innovative mental health intervention to treat post-traumatic stress disorder.

Post-traumatic stress disorder (PTSD) is a disabling trauma and stress-related disorder that may occur after a person experiences a traumatic event, and evokes a combination of intrusion and avoidance symptoms, negative alterations in cognitions and mood, and alterations in arousal and reactivity. Accelerated resolution therapy (ART) is an emerging psychotherapy that provides fast and lasting resolution for mental health problems such as PTSD. ART has been shown to achieve a positive result in one to five sessions, typically over a 2-week period, and requires no homework, skills practice or repeated exposure to targeted events. Initial research, including one randomised control trial, has demonstrated that ART interventions can significantly reduce symptoms of psychological trauma in both civilians and US service members and veterans. These results suggest that ART be considered as either a primary treatment option or for refractory PTSD in those with a suboptimal response to endorsed first-line therapies. Conservative estimates indicate substantial potential cost savings in PTSD treatment. Despite the need for more definitive clinical trials, there is increasing interest in ART in the USA, including in the US Army. The growing positive empirical evidence is compelling, and there appears to be sufficient evidence to warrant UK researchers undertaking ART research. The armed forces offer the potential for comparative international trials. However, equally important are veterans, emergency services personnel and those subjected to violence. ART appears to also have application in other conditions, including depression, anxiety disorders, and alcohol or drug misuse. ART can potentially help personnel traumatised by the unique challenges of war and conflict zones by providing brief psychotherapy in a readily accessible and culturally competent manner. ART facilitates the provision of interventions and resolutions in theatre, thus enhancing forces' fighting capability.

Effects of snake envenomation: a guide for emergency nurses.

Only one species of venomous snake, the adder, is indigenous to the UK, but many people keep venomous snakes as pets and others travel to places, such as the United States, where a wider variety of venomous snakes can be found. Emergency nurses should therefore be prepared to treat bite wounds caused by venomous and non-venomous snakes. This article offers an overview of the most common forms of envenomation in the UK and makes recommendations for the clinical care of people who have sustained snake bites.

Assessing and managing spider and scorpion envenomation.

Envenomation by spiders or scorpions is a public health problem in many parts of the world and is not isolated to the tropics and subtropics. Spiders and scorpions can be unintentionally transported globally, and keeping them as pets is becoming more popular, so envenomation can occur anywhere. Emergency nurses should be prepared to assess and treat patients who present with a bite or sting. This article gives an overview of the signs, symptoms and treatment of envenomation by species of arachnids that are clinically significant to humans.

Conducting qualitative research in the British Armed Forces: theoretical, analytical and ethical implications.

The aim of qualitative research is to produce empirical evidence with data collected through means such as interviews and observation. Qualitative research encourages diversity in the way of thinking and the methods used. Good studies produce a richness of data to provide new knowledge or address extant problems. However, qualitative research resulting in peer review publications within the Defence Medical Services (DMS) is a rarity. This article aims to help redress this balance by offering direction regarding qualitative research in the DMS with a focus on choosing a theoretical framework, analysing the data and ethical approval. Qualitative researchers need an understanding of the paradigms and theories that underpin methodological frameworks, and this article includes an overview of common theories in phenomenology, ethnography and grounded theory, and their application within the military. It explains qualitative coding: the process used to analyse data and shape the analytical framework. A popular four phase approach with examples from an operational nursing research study is presented. Finally, it tackles the issue of ethical approval for qualitative studies and offers direction regarding the research proposal and participant consent. The few qualitative research studies undertaken in the DMS have offered innovative insights into defence healthcare providing information to inform and change educational programmes and clinical practice. This article provides an extra resource for clinicians to encourage studies that will improve the operational capability of the British Armed Forces. It is anticipated that these guidelines are transferable to research in other Armed Forces and the military Veterans population.

Fieldwork and the practical implications for completing qualitative research in the British Armed Forces.

This article provides direction regarding the practical implications of undertaking qualitative research within the British Army, and in particular the Defence Medical Services (DMS). Qualitative researchers must gather sufficient data to answer their research question, and guidance on using DMS healthcare professionals as the research sample is offered, including dealing with the 'gatekeepers' who control access, and the principles for creating a conducive environment to gather reliable data. Data collection is often through intensive interviewing where communication skills and personal awareness are vital to a successful study. Aids to a productive study include memo writing and listing factors that may later provide an insight into how the interviewees characterise and describe particular activities, events and groups. Guidance is offered to develop an interview schedule with questions related to each other in a seamless, meaningful way. Both the researcher's and participant's conscious and unconscious biases must be acknowledged. In this narrow and specialist field, DMS researchers need extensive knowledge of clinical practice and the military's distinctive language, characterised with nuances and abbreviations. These words portray meanings and perspectives that signpost the participants' view of their empirical world. Early identification, without having to seek clarification, means that the researcher can examine hidden assumptions in the sample's own language.

'One Is Too Many' preventing self-harm and suicide in military veterans: a quantitative evaluation.

INTRODUCTION: In 2021, the Armed Forces Covenant Fund Trust allocated over £2 million to programmes designed to have a clear and demonstrable impact on suicide prevention. Four grant holders delivered a combination of psychotherapeutic interventions, group activities, social prescribing, peer support mentoring, life skills coaching, educational courses and practical help with housing and employment. The evaluation was completed between August 2021 and July 2023. METHODS: A survey was completed by 503 participants at entry and 423 at exit. It captured data regarding demographic and military-specific details, health status, situational stressors, predisposing symptoms, help-seeking behaviour, social engagement, housing, living arrangements and employment status. The questionnaire included a number of validated psychometric questionnaires. RESULTS: This evaluation revealed reductions in situational stressors, symptoms and mental health illnesses. Seventy-six per cent of participants had completed an Operational Tour, and 77% were exposed to a traumatic event during service. It was the negative impact of unresolved traumatic effects that influenced service-users to require support. Forty-nine per cent delayed seeking help, and 36% self-referred to the One Is Too Many programme which demonstrates the importance of this option. There were improvements in the participants' social networking, social activities, club membership and having people to rely on. Only 4% of participants were women which reinforces the requirement to explore initiatives to engage with female veterans. CONCLUSIONS: Timely therapeutic and social prescribing interventions in a safe environment lowered depression, anxiety and the associated situational stressors leading to self-harming and may have reduced suicide. It presented another option to veterans and their families regarding where they can obtain support, care and therapeutic interventions. The programme provided a strong foundation for delivery organisations to forge lasting collaborative partnerships that can be extended to working with other authorities and institutes. The results highlight pathways for prevention and intervention strategies to inform policymakers, healthcare professionals and third-sector organisations.

Role of the military community mental health nurse.

AIM: To understand the role and effect of a community mental health nurse (CMHN) deployed to work with military personnel during sea-based operations. METHOD: Semi-structured interviews were conducted to ascertain Royal Navy aircraft carrier military unit commanders' perceptions and experiences of the CMHN's role. FINDINGS: Three mutually inclusive components are necessary to ensure successful integration of the CMHN: familiarity, trust and credibility. CONCLUSION: For CMHNs to function successfully and provide mental health care to sea-based military personnel, they need to demonstrate familiarity, trust and credibility. This will enhance uptake of mental health services among military personnel and ensure they are fit for service.

Prevalence of common mental health disorders in military veterans: using primary healthcare data.

INTRODUCTION: Serving military personnel and military veterans have been identified as having a high prevalence of mental disorders. Since 1985, UK patients' primary healthcare (PHC) medical records contain Read Codes (now being replaced by Systematized Nomenclature of Medicine - Clinical Terms (SNOMED CT) codes) that mark characteristics such as diagnosis, ethnicity and therapeutic interventions. This English study accesses a cohort profile of British Armed Forces veterans to examine the diagnosed common mental disorders by using PHC records. METHODS: This analysis has been drawn from initiatives with PHC practices in the Northwest of England to increase veteran registration in general practice. Demographic data were collected including gender, age and marital status. Data were also collected on common mental health disorders associated with the Armed Forces. RESULT: 2449 veteran PHC records were analysed. 38% (N=938) of veterans in this cohort had a code on their medical record for common mental health disorders. The highest disorder prevalence was depression (17.8%, N=437), followed by alcohol misuse (17.3%, N=423) and anxiety (15.0%, N=367). Lower disorder prevalence was seen across post-traumatic stress disorder (PTSD) (3.4%, N=83), dementia (1.8%, N=45) and substance misuse (0.8%, N=19). Female veterans had a higher prevalence of mental disorders than their male counterparts, while men a higher prevalence of PTSD; however, the gender difference in the latter was not significant (p>0.05). CONCLUSION: The SNOMED searches do not detail why certain groups had higher recordings of certain disorders. A future study that accesses the PHC written medical notes would prove enlightening to specifically identify what situational factors are having the most impact on the veteran population. The results from a sizeable English veteran population provide information that should be considered in developing veteran-specific clinical provision, educational syllabus and policy.

Where are all the veterans? A mixed methods assessment of a systematic strategy to increase veteran registration in UK primary healthcare practices.

OBJECTIVES: To identify effective initiatives to increase veteran registration in UK primary healthcare (PHC) practices. DESIGN: A structured and systematic strategy was designed to improve the number of military veterans correctly coded within PHC. A mixed methods approach was adopted to evaluate the impact. PHC staff provided anonymised patient medical record data that used Read and Systematised Nomenclature of Medicine - Clinical Terms codes to identify the number of veterans within each PHC practice. This included baseline data, then scheduled further information after two phases of internal advertisement and two phases of external advertisement of different initiatives intended to raise veteran registration. Qualitative data was acquired through post-project interviews with PHC staff to ascertain the effectiveness, benefits, problems and means for improvement. A modified Grounded theory was used for the 12 staff interviews. SETTING AND PARTICIPANTS: Twelve PHC practices in Cheshire, England, participated in this research study with a combined total of 138 098 patients. Data was collected between 01 September 2020 until 28 February 2021. RESULTS: Overall, veteran registration increased by 218.1% (N=1311). Estimated coverage of veterans increased from a coverage of 9.3% to a coverage of 29.5%. There was an increased population coverage ranging from 5.0% to 54.1%. The staff interviews revealed improved staff commitment and their taking ownership of the responsibility to improve veteran registration. The primary challenge was the COVID-19 pandemic, in particular the significantly reduced footfall and the communication opportunities and interface with patients. CONCLUSIONS: Managing an advertising campaign and improving veteran registration during a pandemic caused huge problems, but it also presented opportunities. Enabling a significant increase in PHC registration during the harshest and most testing conditions indicates that the accomplished achievements have substantial merit for wider adoption and impact.

Evaluating serious stress in military veterans, their carers and families: a protocol.

In 2018, the Armed Forces Covenant Fund Trust (ACFT) allocated approximately £4M to seven UK projects to address serious stress in military veterans, their carers and families. These programmes commenced between May and October 2019 and will conclude in August 2021.This paper outlines the protocol for the evaluation of the Tackling Serious Stress programme and the novel support provided to grant holders. Entry into the programmes was through multiple routes, including self-referrals with an anticipated sample of approximately 2000 participants. A common outcomes framework was designed to measure outcomes. Grant holders accepted ownership for data collection and quality and were supported through accompanying guidance material.Veterans were often reluctant to seek support, and the anonymous and confidential nature of the evaluation plus the study team's military background helped address this. Participants' voices were a key part in developing the protocol, leading to results to inform policy and highlight success, efficiency and cost effectiveness, and providing markers for future development.The study provided a reservoir of information. Interim reports indicated compliance with performance indicators and provided timely evidence. Shared learning provided grant holders with an indication of what was helping the beneficiaries and what needed to be improved. The combination of all data sets provided the ACFT with a resource to demonstrate success and insight into projects where improvement was required, and indicators of how to redress these problems. The study protocol provided a platform for building lasting partnerships.

Assessing the value of bypassing agent therapy used prophylactic versus on-demand, during immune tolerance induction for treatment of inhibitors: a retrospective chart review.

BACKGROUND: Haemophilia A is a bleeding disorder caused by deficiency of coagulation factor VIII (FVIII) which leads to severe and repeated bleedings. There is a need to understand the optimal treatment pathway for FVIII inhibitors with the use of immune tolerance induction (ITI) and the role of haemostatic 'bypassing' agents (BPA) on-demand (OD) or prophylactically (Px). The aim of this study was to gain a better understanding of the real-world use of BPA therapy administered prophylactically or on-demand concomitant with ITI, for the treatment of an inhibitor to FVIII replacement therapy in patients with severe haemophilia A. METHODS: Retrospective observational data were used to capture disease management information for patients who were aged 16 or under and had received ITI and BPA treatment for their most recent inhibitor from Jan-2015 to Jan-2019, for 47 patients in the UK and Germany. Descriptive comparisons of the clinical effectiveness and resource utilisation of Px and OD BPA therapy during ITI were conducted. RESULTS: During ITI and BPA treatment, for an inhibitor, bleeding events averaged 1.5 and 1.2 for Px and OD treatment respectively. Compared to only BPA therapy we see 3.4 and 1.4 bleeding events for Px and OD respectively during an inhibitor. CONCLUSION: Baseline disease characteristics differed between BPA therapy cohorts and this resulted in higher clinical effectiveness of ITI treatment alongside BPA Px than BPA OD during an inhibitor.

Evaluation of the NHS England 'Op COURAGE' High Intensity Service for military veterans with significant mental health problems.

INTRODUCTION: In November 2020, The NHS for England launched a pilot High Intensity Service (HIS) programme for treating military veterans complex mental health problems. Seven regional grants were awarded to manage the HIS, including NHS Solent, in South East England. This paper details an evaluation of the HIS, which was conducted from February 2021 to August 2022. METHODS: This mixed-methods study gained quantitative data from a specifically designed questionnaire that included a number of validated psychometric questionnaires. These were completed by either HIS staff or beneficiaries at entry and exit from the HIS, and qualitative data were gained from semi-structured interviews with the HIS staff. RESULTS: Data were sourced from 45 pre-questionnaires, 25 post programme questionnaires and 11 interviews. This evaluation identified reductions in situational stressors, symptoms and reported illnesses for veterans in crisis. There were reductions in depression, anxiety and post-traumatic stress disorder following programme exit. Staff reported that there was no notable changes in stress levels which appeared to remain high at programme exit. Staff interviews highlighted the importance of simultaneously understanding the social and psychological needs of veterans in mental health crisis. The benefits of integrating veteran staff members into military veteran health services were identified, demonstrating improvements in education around military culture in civilian services. CONCLUSIONS: The importance of collaboration between clinical and veteran staff members in veteran health services was noted, demonstrating the positive impact social care provision has on veteran's overall health and well-being. Veteran engagement with the service was advocated as a result of veterans accessing the service feeling understood. This first independent evaluation of the HIS provides a positive reflection, and adds to the limited empirical evidence exploring veteran engagement in health services.