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Multiple Sclerosis and Related Disorders Nov 2022According to Leventhal's self-regulation model, ill people construct personal representations of their disease, namely illness perceptions, which impact their coping... (Review)
Review
According to Leventhal's self-regulation model, ill people construct personal representations of their disease, namely illness perceptions, which impact their coping strategies and the emotional response to their condition. Since these representations develop in the social environment, the individuals' perceptions may also be related to the opinions of their caregivers. This systematic review aims at synthesising and critically appraising literature pertaining the relationship between illness perceptions and outcome in persons with multiple sclerosis and their caregivers. A literature search was conducted in MEDLINE, PsycINFO, and CINAHL. Only papers with the following characteristics were included: quantitative studies; written in English or Italian; published from 1992; investigating the relationship between illness perceptions and any outcome in persons with multiple sclerosis and/or their caregivers; using validated scales assessing illness perceptions. Twenty papers were included and appraised through the 16-item Quality Assessment Tool for Studies with Diverse Designs. The quality of the papers was acceptable. Eighteen out of 20 papers reported the existence of a moderate effect size when analysing the relationship between illness perceptions and outcome, whereby "positive" perceptions (e.g. stronger beliefs of control) related to better outcomes, while "negative" ones (e.g. attribution of negative consequences to the disease) related to worse outcome.
Topics: Humans; Multiple Sclerosis; Adaptation, Psychological; Caregivers; Emotions
PubMed: 36130458
DOI: 10.1016/j.msard.2022.104180 -
International Journal of Environmental... Aug 2021Mentalization processes seem to be of high relevance for social learning and seem important in all psychotherapies. The exact role of mentalization processes in... (Review)
Review
BACKGROUND
Mentalization processes seem to be of high relevance for social learning and seem important in all psychotherapies. The exact role of mentalization processes in psychotherapy is still unknown. The aim of the present systematic review is to investigate whether mentalization is related to the therapeutic outcome and, if so, whether it has a moderating, mediative, or predictive function.
METHOD
A systematic review with an electronic database search was conducted. A total of 2567 records were identified, and 10 studies were included in the final synthesis.
RESULTS
Psychotherapy research is still in an initial phase of examining and understanding the impact of mentalization on psychotherapy outcome. The small number of studies and the executed study designs and statistical analyses indicate the possible role that mentalization has in psychotherapy.
CONCLUSION
Generally, strongly elaborated study designs are needed to identify the role of mentalization in psychotherapy. Mentalization seems to be differently represented in differential treatment approaches. Nevertheless, it should be noted that the patient's mentalizing capacity seems to be relevant to the psychotherapy process. Psychotherapies should be adapted to this.
Topics: Humans; Mentalization; Psychotherapy
PubMed: 34501751
DOI: 10.3390/ijerph18179161 -
BMC Medical Research Methodology Feb 2017Observational studies are widely used in pharmacoepidemiology. Several designs can be used, in particular self-controlled designs (case-crossover and self-controlled... (Review)
Review
BACKGROUND
Observational studies are widely used in pharmacoepidemiology. Several designs can be used, in particular self-controlled designs (case-crossover and self-controlled case series). These designs offer the advantage of controlling for time-invariant confounders, which may not be collected in electronic healthcare databases. They are particularly useful in pharmacoepidemiology involving healthcare database. To be valid, they require the presence of some characteristics (key validity assumptions), and in such situations, these designs should be preferred. We aimed at describing the appropriate use and reporting of the key validity assumptions in self-controlled design studies.
METHODS
Articles published between January 2011 and December 2014, and describing a self-controlled study design involving electronic healthcare databases were retrieved. The appropriate use (fulfilment of key assumptions) was studied in terms of major (abrupt onset event, rare or recurrent event, and intermittent exposure) and minor assumptions (those for which the design can be adapted).
RESULTS
Among the 107 articles describing a self-controlled design, 35/53 (66%) case-crossover studies, and 48/55 (87%) self-controlled case series fulfilled the major validity assumptions for use of the design; 4/35 and 14/48 respectively did not fulfill the minor assumptions. Overall, 31/53 (58%) case-crossover studies and 34/55 (62%) self-controlled case series fulfilled both major and minor assumptions. The reporting of the methodology or the results was appropriate, except for power calculation.
CONCLUSIONS
Self-controlled designs were not appropriately used in34% and 13% of the articles we reviewed that described a case-crossover or a self-controlled case series design, respectively. We encourage better use of these designs in situations in which major validity assumptions are fulfilled (i.e., for which they are recommended), accounting for situations for which the design can be adapted.
Topics: Cross-Over Studies; Databases, Factual; Delivery of Health Care; Humans; Logistic Models; Outcome Assessment, Health Care; Pharmacoepidemiology; Reproducibility of Results; Research Design
PubMed: 28178924
DOI: 10.1186/s12874-016-0278-0 -
Frontiers in Public Health 2023Hepatitis B and C are a threat to public health. Screening of high-risk groups, such as migrants from high-endemic areas, enables early identification and treatment... (Review)
Review
INTRODUCTION
Hepatitis B and C are a threat to public health. Screening of high-risk groups, such as migrants from high-endemic areas, enables early identification and treatment initiation. This systematic review identified barriers and facilitators for hepatitis B and C screening among migrants in the European Union/European Economic Area (EU/EEA).
METHODS
Following PRISMA guidelines, databases PubMed, Embase Ovid, and Cochrane were searched for English articles published between 1 July 2015 and 24 February 2022. Articles were included, not restricted to a specific study design, if they elaborated on HBV or HCV screening in migrant populations from countries outside Western Europe, North America, and Oceania, and residing in EU/EEA countries. Excluded were studies with solely an epidemiological or microbiological focus, including only general populations or non-migrant subgroups, or conducted outside the EU/EEA, without qualitative, quantitative, or mixed methods. Data appraisal, extraction, and quality assessment were conducted and assessed by two reviewers. Barriers and facilitators were categorized into seven levels based on multiple theoretical frameworks and included factors related to guidelines, the individual health professional, the migrant and community, interaction, the organization and economics, the political and legal level, and innovations.
RESULTS
The search strategy yielded 2,115 unique articles of which 68 were included. Major identified barriers and facilitators to the success of screening related to the migrant (knowledge and awareness) and community level (culture, religion, support) and the organizational and economic level (capacity, resources, coordinated structures). Given possible language barriers, language support and migrant sensitivity are indispensable for facilitating interaction. Rapid point-of-care-testing is a promising strategy to lower screening barriers.
DISCUSSION
The inclusion of multiple study designs provided extensive insight into barriers, strategies to lower these barriers, and facilitators to maximize the success of screening. A great variety of factors were revealed on multiple levels, therefore there is no one-size-fits-all approach for screening, and initiatives should be adopted for the targeted group(s), including tailoring to cultural and religious beliefs. We provide a checklist of facilitators and barriers to inform adapted interventions to allow for optimal screening impact.
Topics: Humans; Hepatitis B; European Union; Checklist; Cognition; Databases, Factual
PubMed: 36875381
DOI: 10.3389/fpubh.2023.1118227 -
Trials May 2021Chemoprophylactics against emerging epidemic and pandemic infectious diseases offer potential for prevention but require efficacy and safety analysis before widespread... (Review)
Review
BACKGROUND
Chemoprophylactics against emerging epidemic and pandemic infectious diseases offer potential for prevention but require efficacy and safety analysis before widespread use can be recommended. Chemoprophylaxis with repurposed drugs enables deployment ahead of development of novel vaccines. It may have particular utility as a stopgap ahead of vaccine deployment or when vaccines become less effective on virus variants, in countries where there may be structural inaccessibility to vaccines or in specific risk-groups. Rapid implementation of robust trial designs is a persistent challenge in epidemics. We systematically reviewed SARS-CoV-2 and COVID-19 chemoprophylaxis trial registrations from the first 21 weeks of the pandemic to critically appraise significant design features and alignment of study populations to clinical and public health uses, and describe candidate chemoprophylactic agents.
METHODS
We searched online international trial databases from 31 Dec 2019 to 26 May 2020 using keywords "proph*" or "prevention". Trial protocols assessing efficacy of chemoprophylactic agents for COVID-19 were included. Trial components were screened for eligibility and relevant studies extracted. Key trial design features were assessed.
RESULTS
We found 76 chemoprophylaxis study registrations, proposing enrolment of 208,367 people with median size of 490 (IQR 262-1710). A randomised design was specified for 63 trials, 61 included a control group and total proposed enrolment size was 197,010, median 600 (IQR 236-1834). Four protocols provided information on effect size sought. We estimate that for a control group attack rate of 10%, 66% of trials would be underpowered to detect a 50% effect size, and 97% of trials would be underpowered to detect a 30% effect size (at the 80% level). We found evidence of adaptive design in one trial registration only. Laboratory-confirmed infection with or without symptoms was the most common primary outcome. Polymerase chain reaction testing alone was used in 46% of trials, serological testing in 6.6% and 14.5% used both testing methods. Healthcare workers were the target population in 52/79 (65.8%) trials: 49 pre-exposure prophylaxis (PrEP) and 3 post-exposure prophylaxis (PEP). Sixteen trials (20.3%) planned PEP in close contacts. Five studies (6.3%) considered chemoprophylaxis in clinical-risk patients. Older adults were the focus of recruitment in only 3 (3.8%) studies (all long-term care facilities). Two (2.5%) studies of PrEP in the general population included older adults. Hydroxychloroquine was the most common candidate agent in 55/79 trials (69.6%), followed by chloroquine (4/79, 5.0%) and lopinavir/ritonavir (3/79, 3.8%).
CONCLUSION
Many registered COVID-19 chemoprophylaxis efficacy trials were underpowered to detect clinically meaningful protection at epidemiologically informed attack rates. This, compounded with the time that has taken to organise these trials as compared to the rapid development of COVID-19 vaccines, has rendered these trials of marginal importance. International coordination mechanisms and collaboration is required. Supporting the design of feasible chemoprophylaxis trials, large enough to generate strong evidence, early on in an epidemic using adaptive platform trial designs will allow structured entry and exit of candidate agents and rapid stand-up of trial infrastructure.
REVIEW PROTOCOL REGISTRATION
Our protocol is registered at https://www.osf.io/vp56f on May 20, 2020.
Topics: Aged; Antiviral Agents; COVID-19; COVID-19 Vaccines; Chemoprevention; Humans; Pandemics; SARS-CoV-2; Treatment Outcome
PubMed: 34051840
DOI: 10.1186/s13063-021-05323-4 -
Wellcome Open Research 2023Public Health Emergencies (PHE) demand expeditious research responses to evaluate new or repurposed therapies and prevention strategies. Alternative Design Trials...
Public Health Emergencies (PHE) demand expeditious research responses to evaluate new or repurposed therapies and prevention strategies. Alternative Design Trials (ADTs) and Adaptive Platform Trials (APTs) have enabled efficient large-scale testing of biomedical interventions during recent PHEs. Design features of these trials may have implications for engagement and/or informed consent processes. We aimed to rapidly review evidence on engagement and informed consent for ADTs and APTs during PHE to consider what (if any) recommendations can inform practice. In 2022, we searched 8 prominent databases for relevant peer reviewed publications and guidelines for ADTs/APTs in PHE contexts. Articles were selected based on pre-identified inclusion and exclusion criteria. We reviewed protocols and informed consent documents for a sample of large platform trials and consulted with key informants from ADTs/APT trial teams. Data were extracted and summarised using narrative synthesis. Of the 49 articles included, 10 were guidance documents, 14 discussed engagement, 10 discussed informed consent, and 15 discussed both. Included articles addressed ADTs delivered during the West African Ebola epidemic and APTs delivered during COVID-19. PHE clinical research guidance documents highlight the value of ADTs/APTs and the importance of community engagement, but do not provide practice-specific guidance for engagement or informed consent. Engagement and consent practice for ADTs conducted during the West African Ebola epidemic have been well-documented. For COVID-19, engagement and consent practice was described for APTs primarily delivered in high income countries with well-developed health service structures. A key consideration is strong communication of the complexity of trial design in clear, accessible ways. : We highlight key considerations for best practice in community engagement and informed consent relevant to ADTs and APTs for PHEs which may helpfully be included in future guidance. : The review protocol is published online at Prospero on 15/06/2022: registration number CRD42022334170.
PubMed: 37654739
DOI: 10.12688/wellcomeopenres.19318.1 -
Interactive Journal of Medical Research Feb 2022This review focused on how sexual consent ability was determined, managed, and enhanced in people with cognitive disabilities, with the aim of better understanding the... (Review)
Review
BACKGROUND
This review focused on how sexual consent ability was determined, managed, and enhanced in people with cognitive disabilities, with the aim of better understanding the recurring themes influencing the design and implementation of these approaches. If a person's consensual ability becomes compromised, owing to either an early or late-onset cognitive disability, the formal systems involved must establish plans to balance the individual's rights and restrictions on sexual expression. This review identified these plans, focusing on how they promoted the intimacy rights of the individual.
OBJECTIVE
This study aims to identify approaches that determine sexual consent ability in people with cognitive disabilities, identify the means of managing and enhancing sexual consent ability in people with cognitive disabilities, and note the recurring themes that influence how these approaches and management systems are designed and implemented.
METHODS
A systematic literature review was performed using EBSCOhost (Social Gerontology, CINAHL Plus, MEDLINE, and SocINDEX), Embase, PsyInfo, and Scopus to locate reports on terms expanded on sexual consent and cognitive disability.
RESULTS
In all, 47 articles were identified, featuring assessment practices, legal case studies, and clinical standards for managing sexual consent capacity in people with cognitive disabilities. A total of 8 studies (5/8, 63% qualitative and 3/8, 38% quantitative) were included out of the 47 articles identified. Approaches for determining sexual consent included functional capacity and person-centered, integrated, and contextual approaches. Management of sexual consent ability included education, attitude, and advanced directives and support networks. The recurring themes that influenced these approaches included the 3 legal criteria of consent, American Bar Association and American Psychological Association Model, Lichtenberg and Strzepek Instrument, Ames and Samowitz Instrument, Lyden approach, Mental Capacity Act of 2005, and Vancouver Coastal Health Authority of 2009.
CONCLUSIONS
Determining sexual consent takes a holistic approach, with individuals judged in terms of their adaptive abilities, capacities, and human rights. The attitudes of those using this holistic approach need to be balanced; otherwise, the sexual rights of assessed people could be moved either in favor or against them. The ideal outcome, after person-centered considerations of those living with cognitive disabilities includes the people themselves being involved in the process of personalizing these approaches used to facilitate healthy intimate relationships.
PubMed: 35119371
DOI: 10.2196/28137 -
Danish Medical Journal Oct 2013Stoma creation is a surgical operation where the surgeon makes an artificial opening on the abdomen from where the bowel is taken out. It is a radical treatment with... (Review)
Review
BACKGROUND
Stoma creation is a surgical operation where the surgeon makes an artificial opening on the abdomen from where the bowel is taken out. It is a radical treatment with permanent physical signs of bodily change. In general, it leads to loss of a central and personal physical function, as well as an alteration in the bodily design. Research in the field may provide additional information about central elements when adapting to life with a stoma. There are currently no studies that adequately focus on the relationship between health-related quality of life and stoma construction in a Danish context, neither for temporary or permanent construction, nor in relation to the importance of stoma handling.
PURPOSE
The overall objective of the study was to investigate health-related quality of life related to stoma creation and patient education. Methodologically, the project was implemented as a mixed methods study in which qualitative interview studies and two systematic literature reviews identified interventions, which were subsequently tested in a clinical case/control study. Finally the case/control study was made subject to an economic analysis. The project is based on 6 papers reporting the results. ARTICLE 1: Impact of a temporary stoma on patients everyday-lives: feelings of uncertainty while waiting for closure of the stoma. The study included 7 participants who were interviewed in focus groups. The results indicated that patients experienced a high degree of uncertainty in connection with the stoma being temporary. At the same time, participants had a strong need to control both their physical appearance and their changed bodily functions. Participants opted for education programs involving teachers with a stoma. ARTICLE 2: Learning to live with a Permanent Intestinal Ostomy: Impact on everyday life and Educational Needs. The study included 15 participants who were interviewed in groups related to whether they were treated for cancer or non-cancer. The results showed that participants often experienced the stoma as a taboo, and emotions related to stigma were identified. In addition, participants were influenced by the stoma in various ways, and the stoma imposed some restrictions on the participants. Participants pointed at group-based education, as well as the involvement of teachers who had a stoma. ARTICLE 3: Spouses of patients with a stoma lack information and support and are restricted in their social and sexual life: a systematic review. The study included 6 articles based on quantitative and qualitative data showing that spouses were affected in several ways by the construction of the stoma. The results pointed at spouses not being informed and supported sufficiently by neither enterostoma therapists or surgeons. ARTICLE 4: Patient education has a positive effect in patients with a stoma - a systematic review The study included 7 studies, all with quantitative results. They showed that patient education had a positive impact in several areas including shorter hospital stay, less time until proficiency in stoma management is reached, an increase in quality of life, increased knowledge about the stoma, and increased self-efficacy. ARTICLE 5: Health-related quality of life increases when patients with a stoma attend patient education - a case/control study. The study included 50 participants shortly after stoma creation. The results showed that the disease-specific quality of life was significantly increased in the intervention group, while generic health-related quality of life was positively affected in different dimensions in both groups. ARTICLE 6: Decreased costs with patient education after stoma creation. The study was an economic analysis based on participants in Article 5. The results indicated that there were fewer unplanned re-admissions related to the stoma, and that patients in the intervention group did not visit the general practitioner as much as patients in the control group. Furthermore, we found that the average cost per patient did not increase when establishing a patient education program.
CONCLUSION
The thesis concludes that patient education has a positive impact on patients' quality of life, and that costs are reduced. At the same time, it is concluded that living with a stoma is a complex situation, which also involves spouses and close relatives, and that patient education must be based on multiple interventions that are not all explored in this project.
Topics: Adaptation, Psychological; Adult; Costs and Cost Analysis; Enterostomy; Humans; Life Style; Patient Education as Topic; Postoperative Period; Quality of Life; Surgical Stomas
PubMed: 24083536
DOI: No ID Found -
Health Expectations : An International... Aug 2022Autistic children and young people (CYP) experience oral health (OH) inequalities. They are at high risk of dental disease and show significant levels of unmet need in... (Review)
Review
BACKGROUND
Autistic children and young people (CYP) experience oral health (OH) inequalities. They are at high risk of dental disease and show significant levels of unmet need in relation to OH and access to dental care.
AIM
This study aimed to gather evidence on the factors that influence OH behaviours, access to and delivery of dental care for autistic CYP.
DESIGN
This was a mixed-methods narrative systematic review.
DATA SOURCES
Embase, Web of Science, Dentistry & Oral Sciences Source, MEDLINE, Psychinfo, Scopus, CINAHL, SocINDEX and grey literature were the data sources for this study.
REVIEW METHODS
A systematic search was conducted for qualitative, quantitative and mixed-methods research studies from countries with a High Development Index that related to OH behaviours, access to and delivery of dental care for autistic CYP. Results were analysed using narrative synthesis.
RESULTS
From 59 eligible studies, 9 themes were generated: (1) affordability and accessibility; (2) autism-related factors and cognitive or motor skill differences; (3) the dental environment; (4) managing CYP's behaviour; (5) responding and adapting to the needs of the autistic CYP and their parent/carer; (6) attitude of dental health professionals (DHPs) towards autistic CYP and their parents/carers; (7) knowledge of how to care for and support CYP's OH; (8) empowerment of parents/carers and collaboration with DHPs; and (9) communication and building rapport.
CONCLUSION
The adoption of healthy OH behaviours and access to dental care by autistic CYP is impacted by a range of factors including those intrinsically related to a diagnosis of autism, for example, communication and those often associated with autism, for example, sensory sensitivities. Access to better OH and dental care can be facilitated by responding to the individual needs of autistic CYP through accommodation, education and adaptation. This necessitates greater awareness and knowledge of autism amongst DHPs and the provision of appropriate services. More methodologically robust intervention studies are needed to identify effective ways to support autistic CYP in achieving good OH and access to dental care.
PATIENT AND PUBLIC CONTRIBUTION
The review protocol was developed with members of the project patient and public involvement group who provided the autistic voice, contributing to the interpretation of the review findings and writing of the manuscript.
Topics: Adolescent; Autistic Disorder; Child; Communication; Delivery of Health Care; Health Behavior; Health Personnel; Humans
PubMed: 35716111
DOI: 10.1111/hex.13544 -
Sensors (Basel, Switzerland) Jul 2021The number of people living with dementia in the world is rising at an unprecedented rate, and no country will be spared. Furthermore, neither decisive treatment nor... (Review)
Review
The number of people living with dementia in the world is rising at an unprecedented rate, and no country will be spared. Furthermore, neither decisive treatment nor effective medicines have yet become effective. One potential alternative to this emerging challenge is utilizing supportive technologies and services that not only assist people with dementia to do their daily activities safely and independently, but also reduce the overwhelming pressure on their caregivers. Thus, for this study, a systematic literature review is conducted in an attempt to gain an overview of the latest findings in this field of study and to address some commercially available supportive technologies and services that have potential application for people living with dementia. To this end, 30 potential supportive technologies and 15 active supportive services are identified from the literature and related websites. The technologies and services are classified into different classes and subclasses (according to their functionalities, capabilities, and features) aiming to facilitate their understanding and evaluation. The results of this work are aimed as a base for designing, integrating, developing, adapting, and customizing potential multimodal solutions for the specific needs of vulnerable people of our societies, such as those who suffer from different degrees of dementia.
Topics: Caregivers; Dementia; Humans; Technology
PubMed: 34300547
DOI: 10.3390/s21144806