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BMC Public Health Jun 2024Stigma, lack of trust in authorities, and poor knowledge can prevent health-seeking behaviour, worsen physical and mental health, and undermine efforts to control...
BACKGROUND
Stigma, lack of trust in authorities, and poor knowledge can prevent health-seeking behaviour, worsen physical and mental health, and undermine efforts to control transmission during disease outbreaks. These factors are particularly salient with diseases such as mpox, for which 96% of cases in the 2022-2023 UK outbreak were identified among gay, bisexual, queer and men who have sex with men (MSM). This study explored stigma and health-seeking behaviour in Liverpool through the lens of the recent mpox outbreak.
METHODS
Primary sources of data were interviews with national and regional key informants involved in the mpox response, and participatory workshops with priority populations. Workshop recruitment targeted Grindr users (geosocial dating/hookup app) and at risk MSM; immigrant, black and ethnic minority MSM; and male sex workers in Liverpool. Data were analysed using a deductive framework approach, building on the Health Stigma and Discrimination Framework.
RESULTS
Key informant interviews (n = 11) and five workshops (n = 15) were conducted. There were prevalent reports of anticipated and experienced stigma due to mpox public health messaging alongside high demand and uptake of the mpox vaccine and regular attendance at sexual health clinics. Respondents believed the limited impact of stigma on health-seeking behaviour was due to actions by the LGBTQ + community, the third sector, and local sexual health clinics. Key informants from the LGBTQ + community and primary healthcare felt their collective action to tackle mpox was undermined by central public health authorities citing under-resourcing; a reliance on goodwill; poor communication; and tokenistic engagement. Mpox communication was further challenged by a lack of evidence on disease transmission and risk. This challenge was exacerbated by the impact of the COVID-19 pandemic on the scientific community, public perceptions of infectious disease, and trust in public health authorities.
CONCLUSIONS
The LGBTQ + community and local sexual health clinics took crucial actions to counter stigma and support health seeking behaviour during the 2022-2023 UK mpox outbreak. Lessons from rights based and inclusive community-led approaches during outbreaks should be heeded in the UK, working towards more meaningful and timely collaboration between affected communities, primary healthcare, and regional and national public health authorities.
Topics: Humans; Male; Trust; Health Promotion; Social Stigma; Disease Outbreaks; United Kingdom; Sexual and Gender Minorities; Adult; Homosexuality, Male; Patient Acceptance of Health Care; COVID-19; Qualitative Research
PubMed: 38898512
DOI: 10.1186/s12889-024-19176-4 -
Nature Jun 2024
Topics: Humans; Artificial Intelligence; Brain; Informed Consent; Neurosciences
PubMed: 38898298
DOI: 10.1038/d41586-024-02022-3 -
Ciencia & Saude Coletiva Jun 2024This article analyzes practices of care and the HIV diagnosis disclosure process to children and adolescents living with HIV/AIDS. A case study was conducted in an...
This article analyzes practices of care and the HIV diagnosis disclosure process to children and adolescents living with HIV/AIDS. A case study was conducted in an outpatient clinic located in a public hospital in Rio de Janeiro through participant observation, semi-structured interviews with health professionals, and the consultation of documents produced by the professionals. The analysis, based on the sociology of Simmel and Goffman, points to the revelation of the diagnosis as a hallmark that accompanies all the care established with users and sheds light on issues such as secrecy, stigma and the possible understandings about the health condition established. As a result, institutionalized relationships contribute to a progressive contact with the condition of bearing a stigma and enable phases of a patient's life protected by information to exist.
Topics: Humans; Adolescent; Social Stigma; HIV Infections; Child; Confidentiality; Acquired Immunodeficiency Syndrome; Male; Female; Truth Disclosure
PubMed: 38896666
DOI: 10.1590/1413-81232024296.02102023 -
Canadian Journal of Pain = Revue... 2024Wait times at Canadian multidisciplinary pain clinics have been reported as excessive for nearly 2 decades.
Patient-Reported Wait Times and the Impact of Living with Chronic Pain on their Quality of Life: A Waiting Room Survey in Chronic Pain Clinics in Ontario, Manitoba, and Quebec.
BACKGROUND
Wait times at Canadian multidisciplinary pain clinics have been reported as excessive for nearly 2 decades.
AIMS
The aim of this study was to gain insight into the patient experience of waiting for chronic pain specialty care.
METHODS
A cross-sectional survey of new patients waiting for an appointment was conducted in six multidisciplinary pain clinics, including one pediatric clinic, in Ontario, Quebec, and Manitoba between February 2020 and October 2022. Participants were asked about the length of time they waited for their appointment since being referred, their quality of life, health care professionals seen while waiting, and an open-ended question, "Is there anything else you'd like to tell us?"
RESULTS
Among the 493 adult and 100 pediatric respondents, 53% of adults and 82% of children reported wait times under 6 months, whereas 22% of adults and 4% of children waited longer than a year. Between 52% and 63% of adults and 29% to 48% of children reported being affected by chronic pain "quite a bit" or "extremely" on measures of quality of life. The most visited health care professionals while waiting for a pain clinic appointment were family doctors/nurse practitioners for adults and physiotherapists for children. Qualitative analysis of open-ended question responses revealed eight themes: system navigation issues, administrative issues, decreased quality of life, distress, self-advocacy, coping strategies, communication, and distrust.
CONCLUSIONS
Our findings provide real-time regional snapshots into the impact of long wait times experienced by Canadians living with chronic pain. There is an urgent need to better support patients during the waiting period. Expanding technologies such as electronic consultation hold great promise.
PubMed: 38894731
DOI: 10.1080/24740527.2024.2345612 -
Sensors (Basel, Switzerland) May 2024The healthcare industry went through reformation by integrating the Internet of Medical Things (IoMT) to enable data harnessing by transmission mediums from different...
The healthcare industry went through reformation by integrating the Internet of Medical Things (IoMT) to enable data harnessing by transmission mediums from different devices, about patients to healthcare staff devices, for further analysis through cloud-based servers for proper diagnosis of patients, yielding efficient and accurate results. However, IoMT technology is accompanied by a set of drawbacks in terms of security risks and vulnerabilities, such as violating and exposing patients' sensitive and confidential data. Further, the network traffic data is prone to interception attacks caused by a wireless type of communication and alteration of data, which could cause unwanted outcomes. The advocated scheme provides insight into a robust Intrusion Detection System (IDS) for IoMT networks. It leverages a honeypot to divert attackers away from critical systems, reducing the attack surface. Additionally, the IDS employs an ensemble method combining Logistic Regression and K-Nearest Neighbor algorithms. This approach harnesses the strengths of both algorithms to improve attack detection accuracy and robustness. This work analyzes the impact, performance, accuracy, and precision outcomes of the used model on two IoMT-related datasets which contain multiple attack types such as Man-In-The-Middle (MITM), Data Injection, and Distributed Denial of Services (DDOS). The yielded results showed that the proposed ensemble method was effective in detecting intrusion attempts and classifying them as attacks or normal network traffic, with a high accuracy of 92.5% for the first dataset and 99.54% for the second dataset and a precision of 96.74% for the first dataset and 99.228% for the second dataset.
Topics: Computer Security; Internet of Things; Humans; Algorithms; Delivery of Health Care; Wireless Technology; Cloud Computing; Confidentiality
PubMed: 38894166
DOI: 10.3390/s24113375 -
Healthcare (Basel, Switzerland) May 20243D printing has been adopted into routine use for certain medical applications, but more widespread usage has been hindered by, among other things, unclear legislation....
3D printing has been adopted into routine use for certain medical applications, but more widespread usage has been hindered by, among other things, unclear legislation. We performed an analysis, using legal doctrinal study and legal informatics, of relevant EU legislation and case law in four issues relevant to medical 3D printing (excluding bioprinting or pharmacoprinting): pre-market approval, post-market liability, intellectual property rights, and data protection. Several gaps and uncertainties in the current legislation and interpretations were identified. In particular, we regard the current EU regulatory framework to be quite limiting and inflexible, exemplifying a cautionary approach common in EU law. Though the need to establish high safety standards in order to protect patients as a disadvantaged population is understood, both legal uncertainties and overregulation are seen as harmful to innovation. Hence, more adaptive legislation is called for to ensure continuous innovation efforts and enhanced patient outcomes.
PubMed: 38891189
DOI: 10.3390/healthcare12111114 -
Trials Jun 2024Evidence indicates that trial participants often struggle to understand participant information leaflets (PILs) for clinical trials, including the concept of...
Trial participants' self-reported understanding of randomisation phrases in participation information leaflets can be high, but acceptability of some descriptions is low, especially those linked to gambling and luck.
BACKGROUND
Evidence indicates that trial participants often struggle to understand participant information leaflets (PILs) for clinical trials, including the concept of randomisation. We analysed the language used to describe randomisation in PILs and determine the most understandable and acceptable description through public and participant feedback.
METHODS
We collected 280 PILs/informed consent forms and one video animation from clinical research facilities/clinical trial units in Ireland and the UK. We extracted text on how randomisation was described, plus trial characteristics. We conducted content analysis to group the randomisation phrases inductively. We then excluded phrases that appeared more than once or were very similar to others. The final list of randomisation phrases was then presented to an online panel of participants and the public. Panel members were asked to rate each phrase on a 5-point Likert scale in terms of their understanding of the phrase, confidence in their understanding and acceptability of the phrase.
RESULTS
Two hundred and eighty PILs and the transcribed text from one video animation represented 229 ongoing or concluded trials. The pragmatic content analysis generated five inductive categories: (1) explanation of why randomisation is required in trials; (2) synonyms for randomisation; (3) comparative randomisation phrases; (4) elaborative phrases for randomisation (5) and phrases that describe the process of randomisation. We had 48 unique phrases, which were shared with 73 participants and members of the public. Phrases that were well understood were not necessarily acceptable. Participants understood, but disliked, comparative phrases that referenced gambling, e.g. toss of a coin, like a lottery, roll of a die. They also disliked phrases that attributed decision-making to computers or automated systems. Participants liked plain language descriptions of what randomisation is and those that did not use comparative phrases.
CONCLUSIONS
Potential trial participants are clear on their likes and dislikes when it comes to describing randomisation in PILs. We make five recommendations for practice.
Topics: Humans; Gambling; Comprehension; Pamphlets; Ireland; Research Subjects; Patient Education as Topic; Health Knowledge, Attitudes, Practice; Self Report; United Kingdom; Female; Health Literacy; Male; Informed Consent; Clinical Trials as Topic; Middle Aged; Adult; Randomized Controlled Trials as Topic
PubMed: 38890748
DOI: 10.1186/s13063-024-08217-3 -
The AAPS Journal Jun 2024We aim to characterize industry-funded trials that have posted the informed consent forms (ICFs), and to assess whether the role played by industry as 'sponsor' or...
We aim to characterize industry-funded trials that have posted the informed consent forms (ICFs), and to assess whether the role played by industry as 'sponsor' or 'collaborator' could impact several relevant variables. A cross-sectional study was conducted on ClinicalTrials.gov on all industry-funded trials registered on or before 25 February 2023. We registered types of intervention, current recruitment status, design, enrollment, and countries involved. For trials with special interest to potential participants and investigators and/or clinicians an analysis of the role played by industry as 'sponsor' or 'collaborator' was performed. Of 116,281 industry-funded trials registered, 741 (0.6%) had posted ICFs. Most of these trials were categorized as 'completed' (n = 408) or 'terminated' (n = 107). The review of a sample of 359 trials showed that most were on drugs and/or biologics (59%), were randomized (51%), conducted exclusively in the USA (72%), and had posted results (79%), protocols (92%), and statistical analysis plans (SAPs) (89%). Trials in which industry participated as 'collaborator' were significantly more likely to post ICFs when trials were in the 'active, not recruiting' phase (OR 4.70, 99.71% CI 1.59-13.9, p < 0.001) than industry-sponsored trials. This was also the case when assessing drugs/biologics (OR 2.64, 99.71% CI 1.25-5.58, p < 0.001). Conversely, companies acting as 'sponsors' were significantly more likely to post ICFs with trials assessing devices, radiation interventions and/or diagnostic tests (OR 0.37, 99.71% CI 0.17-0.79, p < 0.001) than when participating as 'collaborators'. While industry-funded trials rarely post ICFs, when they do, they are highly compliant with transparency requirements. Regulations and ethics codes should consider requiring posting of protocols, SAPs, and ICFs for all clinical trials, regardless the type of sponsor.
Topics: Cross-Sectional Studies; Humans; Clinical Trials as Topic; Drug Industry; Consent Forms; Informed Consent; Registries
PubMed: 38890152
DOI: 10.1208/s12248-024-00943-5 -
Nederlands Tijdschrift Voor Geneeskunde Jun 2024The Dutch Act on Patients Rights requires that physicians record all forms of treatment in the medical file of the patient concerned. This obligation ends once the...
The Dutch Act on Patients Rights requires that physicians record all forms of treatment in the medical file of the patient concerned. This obligation ends once the patient dies. Do family members of the deceased patient then have the right to consult the medical file? This question regularly emerges when family members question the competence of a deceased person, notably when the latter before its death changed its will. According to the Act on Patients Rights access to the medical file of a deceased person by relatives is restricted to three situations. In these cases the treating physicians is required to provide access. Family members do not have the right to require the treating physician to retrospectively report on the competence of the deceased person. Family members can only ask an independent physician to advice on the competence of the deceased individual.
Topics: Humans; Netherlands; Family; Patient Rights; Medical Records
PubMed: 38888414
DOI: No ID Found -
EuroIntervention : Journal of EuroPCR... Jun 2024Coronary access (CA) is a major concern in redo-transcatheter aortic valve implantation (TAVI) for failing supra-annular self-expanding transcatheter aortic valves...
BACKGROUND
Coronary access (CA) is a major concern in redo-transcatheter aortic valve implantation (TAVI) for failing supra-annular self-expanding transcatheter aortic valves (TAVs).
AIMS
This ex vivo study evaluated the benefit of leaflet splitting (LS) on subsequent CA after redo-TAVI in anatomies deemed at high risk of unfeasible CA.
METHODS
Ex vivo, patient-specific models were printed three-dimensionally. Index TAVI was performed using ACURATE neo2 or Evolut PRO (TAV-1) at the standard implant depth and with different degrees of commissural misalignment (CMA). Redo-TAVI was performed using the balloon-expandable SAPIEN 3 Ultra (TAV-2) at different implant depths with commissural alignment. Selective CA was attempted for each configuration before and after LS in a pulsatile flow simulator. The leaflet splay area was assessed on the bench.
RESULTS
In matched comparisons of 128 coronary cannulations across 64 redo-TAVI configurations, the overall feasibility of CA significantly increased after LS (60.9% vs 18.7%; p<0.001). The effect of LS varied according to the sinotubular junction height, TAV-1 design, TAV-1 CMA, and TAV-2 implant depth, given TAV-2 alignment. LS enabled CA for up to CMA 45° with the ACURATE neo2 TAV-1 and up to CMA 30° with the Evolut PRO TAV-1. The combination of LS and a low TAV-2 implant provided the highest feasibility of CA after redo-TAVI. The leaflet splay area ranged from 25.60 mm2 to 37.86 mm2 depending on the TAV-1 platform and TAV-2 implant depth.
CONCLUSIONS
In high-risk anatomies, LS significantly improves CA feasibility after redo-TAVI for degenerated supra-annular self-expanding platforms. Decisions on redo-TAVI feasibility should be carefully individualised, taking into account the expected benefit of LS on CA for each scenario.
Topics: Humans; Transcatheter Aortic Valve Replacement; Aortic Valve; Heart Valve Prosthesis; Prosthesis Design; Printing, Three-Dimensional; Aortic Valve Stenosis; Coronary Vessels; Prosthesis Failure; Reoperation
PubMed: 38887883
DOI: 10.4244/EIJ-D-24-00107