For the love of a barking lady: an exploration of mental illness in the light of Max Scheler's "Invisible person"

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Exploring the Impact of Adding a Respiratory Dimension to the EQ-5D-5L.

Objectives. To evaluate the impact of adding a respiratory dimension (a bolt-on dimension) to the EQ-5D-5L health state valuations. Methods. Based on extensive regression and principal component analyses, 2 respiratory bolt-on candidates were formulated: R1, limitations in physical activities due to shortness of breath, and R2, breathing problems. Valuation interviews for the selected bol

Raleigh, Wake County : an action-oriented community diagnosis for people living with disabilities in Raleigh, NC

Universal Disability Advocates (UDA) is a grassroots, nonprofit organization in Raleigh, N.C. that advocates for people of all ages and abilities in the community. Through a partnership with the North Carolina Office on Disability and Health, UDA invited a team of six students from the UNC School of Public Health in Chapel Hill, NC to conduct an Action-Oriented Community Diagnosis (AOCD) of people living with disabilities in Raleigh. Two UDA members and two employees of the NC Office on Disability and Health agreed to serve as preceptors and mentors for the project and as liaisons between the students and the community. The team first entered the community in October 2003 and the AOCD process was completed following a community forum held in April 2004. The goal of an Action Oriented Community Diagnosis (AOCD) is to gather, analyze, and summarize the perspectives of community members and service providers in a community for the purpose of creating a complete vision of the community’s strengths, challenges, and existing resources on which to build. The AOCD process is designed to culminate in a Community Forum where all community stakeholders come together to create action steps to improve existing situations. The team in Raleigh began the AOCD process by examining secondary data and attending community meetings and events. The team then conducted 32 interviews and 2 focus groups with service providers, individuals with disabilities, and family members of people with disabilities in Raleigh, and identified recurrent themes raised by interviewees. Following a thorough review of all interview transcripts, the team identified the most frequently recurring issues and strengths (called domains) raised by interviewees. The AOCD team then worked with a planning group of community members and service providers to prioritize the recurrent domains. The most important and changeable issues identified by people with disabilities in Raleigh included: the accessibility and affordability of housing and Raleigh; issues of public transportation in Raleigh, the Raleigh built environment, specifically, the accessibility of sidewalks, parking lots and buildings; community awareness in Raleigh and communication with people with disabilities; the unemployment and underemployment of people with disabilities in Raleigh; and the challenges around obtaining services in Raleigh. Each of these domains was the topic of a small group discussion at the Raleigh Community Forum. The Raleigh Community Forum was held on Monday April 19th from 6:00 to 8:30 pm at the Hudson Memorial Presbyterian Church on Six Forks Road in Raleigh. Twenty-five community members and service providers attended the forum. After opening remarks, a brief overview of the methodology of the AOCD process and a detailed description of the prioritized issues for discussion, forum attendees divided into small groups. Small group discussions surrounding each domain led to the generation and prioritization of action steps for the future. Action steps resulting from the small group discussion on the accessibility and affordability of housing in Raleigh included: to attend and speak at at least one builders convention to raise awareness about the needs of people living with disabilities and access to affordable, accessible housing; to raise awareness among the general public through publicity and collaborations with existing organizations like Universal Disability Advocates, The Raleigh Mayor’s Committee, Center for Independent Living, and the Center for Universal Design at North Carolina State University; to include housing information on an existing disability advocacy website now in a design phase; and, to, in the long-term, build a visitable housing complex in accordance with the principles of universal design. Following a discussion on the Raleigh built environment, specifically, the accessibility of sidewalks, parking lots, and buildings, an action step was to form an email group that will arrive at action steps involving collaboration with other organizations. Resulting from a discussion on community awareness in Raleigh and communication issues with health care providers, action steps were to: attend existing community activities, such as health fairs, to increase awareness about this uses; to create a “tips for consumers” brochure focusing on how to advocate for ones’ own health needs; and to continue providing continuing education courses for health care professionals regarding communication with people with disabilities. Action steps resulting from the small group discussion on the unemployment and underemployment of people with disabilities in Raleigh were to: advocate at the state and federal levels by contacting legislators and the governor to ask: Where do people with disabilities fit into your action plans? And is there an action plan for employment for people with disabilities?; to educate the community through existing organizations, to register to vote, and to learn how to effectively advocate for equal employment; and, to educate the community about taking legal action through the Americans with Disabilities Act when necessary. As a discussion of issues of public transportation in Raleigh did not occur during the community forum, no action steps were created. In addition to bringing together Raleigh community members and service providers in communication about the future, the AOCD team involved in this project was particularly interested in the influence of the Americans with Disabilities Act on the presence and functions of community among adults living with disabilities in Raleigh, N.C. Through their research, AOCD team members identified dramatically different views on the existence of a Raleigh community of people with disabilities. This document, which complies information collected through interviews, secondary data sources, and observations of team members, is written with the understanding that the definition of “community of people living with disabilities” used by the team is meaningful and a truth to some, while not believed to exist nor advocated for by others. The definition of a cross-disability community is considered by some to be the critical foundation for continued efforts to secure rights for people living with disabilities. For others, defining people with disabilities as a community is perceived as furthering the historical segregation of this group from the rest of society. For still others, community is defined within the boundaries of one’s own disability and/or geographical or relational factors. This AOCD document is intended to serve as a resource to the people of Raleigh. The document is organized into six sections: an Introduction to the Project, Findings from Secondary Data, Results, Community Forum, Methodology, and Conclusions and Next Steps. The team presents this document in the hope that it will contribute to the existing body of knowledge supporting and advancing people living with disabilities in Raleigh, North Carolina. It has been the team’s privilege to learn from so many people working to make Raleigh a more inclusive community for people with disabilities, and the team hopes the action steps for change generated by the community during this project will compliment existing work or serve as a catalyst for new action.Master of Public Healt

Improving the Detection, Assessment, Management and Prevention of Delirium in Hospices (the DAMPen-D study): protocol for a co-design and feasibility study of a flexible and scalable implementation strategy to deliver guideline-adherent delirium care

INTRODUCTION: Delirium is a complex condition in which altered mental state and cognition causes severe distress and poor clinical outcomes for patients and families, anxiety and stress for the health professionals and support staff providing care, and higher care costs. Hospice patients are at high risk of developing delirium, but there is significant variation in care delivery. The primary objective of this study is to demonstrate the feasibility of an implementation strategy (designed to help deliver good practice delirium guidelines), participant recruitment and data collection. METHODS AND ANALYSIS: Three work packages in three hospices in the UK with public involvement in codesign, study management and stakeholder groups: (1) experience-based codesign to adapt an existing theoretically-informed implementation strategy (Creating Learning Environments for Compassionate Care (CLECC)) to implement delirium guidelines in hospices; (2) feasibility study to explore ability to collect demographic, diagnostic and delirium management data from clinical records (n=300), explanatory process data (number of staff engaged in CLECC activities and reasons for non-engagement) and cost data (staff and volunteer hours and pay-grades engaged in implementation activities) and (3) realist process evaluation to assess the acceptability and flexibility of the implementation strategy (preimplementation and postimplementation surveys with hospice staff and management, n=30 at each time point; interviews with hospice staff and management, n=15). Descriptive statistics, rapid thematic analysis and a realist logic of analysis will be used be used to analyse quantitative and qualitative data, as appropriate. ETHICS AND DISSEMINATION: Ethical approval obtained: Hull York Medical School Ethics Committee (Ref 21/23), Health Research Authority Research Ethics Committee Wales REC7 (Ref 21/WA/0180) and Health Research Authority Confidentiality Advisory Group (Ref 21/CAG/0071). Written informed consent will be obtained from interview participants. A results paper will be submitted to an open access peer-reviewed journal and a lay summary shared with study site staff and stakeholders. TRIAL REGISTRATION NUMBER: ISRCTN55416525

Improving the Detection, Assessment, Management, and Prevention of Delirium in Hospices (the DAMPen-D study): Feasibility Study of a flexible and scalable implementation strategy to deliver guideline-adherent delirium care

BackgroundDelirium is a complex condition, stressful for all involved. Although highly prevalent in palliative care settings, it remains underdiagnosed and associated with poor outcomes. Guideline-adherent delirium care may improve its detection, assessment, and management. AimTo inform a future definitive study that tests whether an implementation strategy designed to improve guideline-adherent delirium care in palliative care settings improves patient outcomes (reduced proportion of in-patient days with delirium).DesignWith Patient Involvement members, we conducted a feasibility study to assess the acceptability of and engagement with the implementation strategy by hospice staff (intervention), and whether clinical record data collection of process (e.g., guideline-adherent delirium care) and clinical outcomes (evidence of delirium using a validated chart-based instrument;) pre- and 12-weeks post-implementation of the intervention would be possible.Setting/participantsIn-patient admissions in three English hospices.Results Between June 2021-December 2022, clinical record data were extracted from 300 consecutive admissions. Despite data collection during COVID-19, target clinical record data collection (n=300) was achieved. Approximately two-thirds of patients had a delirium episode during in-patient stay at both timepoints. A 6% absolute reduction in proportion of delirium days in those with a delirium episode was observed. Post-implementation improvements in guideline-adherent metrics include: clinical delirium diagnosis 15% to 28%; delirium risk assessment 0% to 16%; screening on admission 7% to 35%.Conclusions Collection of data on delirium outcomes and guideline-adherence from clinical records is feasible. The signal of patient benefit supports formal evaluation in a large-scale study

Cochrane corner: Is integrated disease management for patients with COPD effective?

Patients with COPD experience respiratory symptoms, impairments of daily living and recurrent exacerbations. The aim of integrated disease management (IDM) is to establish a programme of different components of care (ie, self-management, exercise, nutrition) in which several healthcare providers (ie, nurses, general practitioners, physiotherapists, pulmonologists) collaborate to provide efficient and good quality of care. The aim of this Cochrane systematic review was to evaluate the effectiveness of IDM on quality of life, exercise tolerance and exacerbation related outcomes. Searches for all available evidence were carried out in various databases. Included randomised controlled trials (RCTs) consisted of interventions with multidisciplinary (≥2 healthcare providers) and multitreatment (≥2 components) IDM interventions with duration of at least 3 months. Two reviewers independently searched, assessed and extracted data of all RCTs. A total of 26 RCTs were included, involving 2997 patients from 11 different countries with a followup varying from 3 to 24 months. In all 68% of the patients were men, with a mean age of 68 years and a mean forced expiratory volume in 1 s (FEV1) predicted value of 44.3%. Patients treated with an IDM programme improved significantly on quality of life scores and reported a clinically relevant improvement of 44 m on 6 min walking distance, compared to controls. Furthermore, the number of patients with ≥1 respiratory related hospital admission reduced from 27 to 20 per 100 patients. Duration of hospitalisation decreased significantly by nearly 4 days

Start Talking About Risks: Development of a Motivational Interviewing-Based Safer Sex Program for People Living with HIV

The epidemiology of HIV infection in the US in general, and in the southeast, in particular, has shifted dramatically over the past two decades, increasingly affecting women and minorities. The site for our intervention was an infectious diseases clinic based at a university hospital serving over 1,300 HIV-infected patients in North Carolina. Our patient population is diverse and reflects the trends seen more broadly in the epidemic in the southeast and in North Carolina. Practicing safer sex is a complex behavior with multiple determinants that vary by individual and social context. A comprehensive intervention that is client-centered and can be tailored to each individual’s circumstances is more likely to be effective at reducing risky behaviors among clients such as ours than are more confrontational or standardized prevention messages. One potential approach to improving safer sex practices among people living with HIV/AIDS (PLWHA) is Motivational Interviewing (MI), a non-judgmental, client-centered but directive counseling style. Below, we describe: (1) the development of the Start Talking About Risks (STAR) MI-based safer sex counseling program for PLWHA at our clinic site; (2) the intervention itself; and (3) lessons learned from implementing the intervention

Exploring the variation in implementation of a COPD disease management programma and its impact on health outcomes

This study aims to (1) examine the variation in implementation of a 2-year chronic obstructive pulmonary disease (COPD) management programme called RECODE, (2) analyse the facilitators and barriers to implementation and (3) investigate the influence of this variation on health outcomes. Implementation variation among the 20 primary-care teams was measured directly using a self-developed scale and indirectly through the level of care integration as measured with the Patient Assessment of Chronic Illness Care (PACIC) and the Assessment of Chronic Illness Care (ACIC). Interviews were held to obtain detailed information regarding the facilitators and barriers to implementation. Multilevel models were used to investigate the association between variation in implementation and change in outcomes. The teams implemented, on average, eight of the 19 interventions, and the specific package of interventions varied widely. Important barriers and facilitators of implementation were (in)sufficient motivation of healthcare provider and patient, the h

Systematic Review and Quality Appraisal of Cost-Effectiveness Analyses of Pharmacologic Maintenance Treatment for Chronic Obstructive Pulmonary Disease:Methodological Considerations and Recommendations

Worldwide, chronic obstructive pulmonary disease (COPD) is a highly prevalent chronic lung disease with considerable clinical and socioeconomic impact. Pharmacologic maintenance drugs (such as bronchodilators and inhaled corticosteroids) play an important role in the treatment of COPD. The cost effectiveness of these treatments has been frequently assessed, but studies to date have largely neglected the impact of treatment sequence and the exact stage of disease in which the drugs are used in real life. We aimed to systematically review recently published articles that reported the cost effectiveness of COPD maintenance treatments, with a focus on key findings, quality and methodological issues. We performed a systematic literature search in Embase, PubMed, the UK NHS Economic Evaluation Database (NHS-EED) and EURONHEED (European Network of Health Economics Evaluation Databases) and included all relevant articles published between 2011 and 2015 in either Dutch, English or German. Main study characteristics, methods and outcomes were extracted and critically assessed. The Quality of Health Economic Studies (QHES) instrument was used as basis for quality assessment, but additional items were also addressed. The search identified 18 recent pharmacoeconomic analyses of COPD maintenance treatments. Papers reported the cost effectiveness of long-acting muscarinic antagonist (LAMA) monotherapy (n = 6), phosphodiesterase (PDE)-4 inhibitors (n = 4), long-acting beta agonist/inhaled corticosteroid (LABA/ICS) combinations (n = 4), LABA monotherapy (n = 2) and LABA/LAMA combinations (n = 2). All but two studies were funded by the manufacturer, and all studies indicated favourable cost effectiveness; however, the number of quality-adjusted life-years (QALYs) gained was small. Less than half of the studies reported a COPD-specific outcome in addition to a generic outcome (mostly QALYs). Exacerbation and mortality rates were found to be the main drivers of cost effectiveness. According to the QHES, the quality of the studies was generally sufficient, but additional assessment revealed that most studies poorly represented the cost effectiveness of real-life medication use. The majority of studies showed that pharmacologic COPD maintenance treatment is cost effective, but most studies poorly reflected real-life drug use. Consistent and COPD-specific methodology is recommended