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1.
Tob Control ; 2023 Dec 26.
Article in English | MEDLINE | ID: mdl-38148144

ABSTRACT

INTRODUCTION: The tobacco endgame, policies aiming to end the commercial tobacco epidemic, requires sustained public support, including among youth. We assessed endgame support among California (USA) adolescents, including their reasons and associated participant and policy-specific factors. METHODS: Teens, Nicotine and Tobacco Project online surveys (n=4827) and focus groups were conducted in 2021 and 2022 among California residents aged 12-17 years. Cross-sectional survey participants were asked their agreement level with eight policy statements related to tobacco and/or cannabis sales restrictions, use in public places and use in multiunit housing. Ordered logistic regression modelled level of agreement according to respondent characteristics, behaviours and statement content. Qualitative data were collected through focus groups (n=51 participants), which were analysed to provide insight into support for different policies. RESULTS: Most survey participants agreed or strongly agreed with tobacco product sales restrictions (72%-75%, depending on the policy), bans on use in public spaces (76%-82%) and smoke-free (79%) and vape-free (74%) apartment buildings. Support was stronger among younger, female, Asian and tobacco non-using participants and for policies directed at 'tobacco' (vs 'vapes' or cannabis), at flavoured tobacco (compared with all tobacco), and when statements featured 'should end' (vs 'not allowed'). Focus group participants who were supportive viewed policies as protecting children from harmful products, while those less supportive cited concerns about limiting adults' freedoms and unintended consequences. CONCLUSIONS: Most participants supported strong tobacco control policies. Public communication that promotes broader endgame benefits besides protecting youth and accelerates industry denormalisation may counter youth concerns and further bolster their support.

2.
Eur J Obstet Gynecol Reprod Biol ; 289: 145-151, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37678127

ABSTRACT

OBJECTIVES: To evaluate the efficacy of combined mifepristone and misoprostol compared to misoprostol alone in outpatient medical treatment of first trimester miscarriage. Additionally, the study intends to compare the rate of complications, adverse effects, and treatment acceptability between groups. STUDY DESIGN: Single-center double-blind randomized placebo-controlled trial including women with diagnosis of missed first trimester miscarriage up to 9 weeks of gestation. RESULTS: Between April 2019 and November 2021, 216 women diagnosed with first trimester miscarriage up to 9 weeks of gestation were randomly assigned to mifepristone group or to misoprostol-alone group. Data from 105 women in mifepristone group and 103 women in misoprostol-alone group were analyzed, with no differences in baseline characteristics. The median time between medications (oral mifepristone/placebo and vaginal misoprostol) was nearly 43 h in both groups (p = 0.906). The median time to first follow-up was 2.6 weeks (IQR 1.0) in mifepristone group and 2.4 weeks (IQR 1.0) in misoprostol-alone group (p = 0.855). The overall success rate of medical treatment was significantly higher in the mifepristone-group comparing to misoprostol-alone group (94.3% vs. 82.5%, RR 1.14, 95% CI, 1.03-1.26; p = 0.008). Accordingly, the rate of surgical treatment was significantly lower in the mifepristone-group (5.7% vs.14.6%, RR 0.39, 95% CI, 0.16-0.97; p = 0.034). The composite complication rate was similar and lower than 4% in both groups. No case of complicated pelvic infection, hemodynamic instability or inpatient supportive treatment was reported. There were no significant differences in the rates of adverse events, median score for vaginal bleeding intensity or analgesics use. Despite the same median value, the score of abdominal pain intensity was significantly higher in the mifepristone-group (p = 0.011). In both groups, more than 65% of the women classified the treatment as "good" and 92% would recommend it to a friend on the same clinical situation. CONCLUSION: The mifepristone plus vaginal misoprostol combined treatment for medical resolution of first trimester miscarriage resulted in significant higher success rate and lower rate of surgical uterine evacuation comparing to misoprostol-alone treatment, with no relevant differences in adverse events or treatment acceptability.


Subject(s)
Abortion, Missed , Abortion, Spontaneous , Misoprostol , Female , Humans , Pregnancy , Mifepristone/adverse effects , Misoprostol/adverse effects , Pregnancy Trimester, First
3.
Public Health Genomics ; 26(1): 135-144, 2023.
Article in English | MEDLINE | ID: mdl-37607497

ABSTRACT

INTRODUCTION: Research on the perceived utility of genomic sequencing has focused primarily on pediatric populations and on individuals and families with rare genetic diseases. Here, we evaluate how well a multifaceted perceived utility model developed with these populations applies to a diverse, adult population aged 18-49 at risk for hereditary cancer and propose new considerations for the model. METHODS: Participants received clinical genomic sequencing in the Cancer Health Assessments Reaching Many (CHARM) study. Semi-structured qualitative interviews were conducted with a subset of participants at 1 and 6 months after results disclosure. We used an approach influenced by grounded theory to examine perceptions of the utility of genomic sequencing and analyzed how utility in CHARM mapped to the published multifaceted perceived utility model, noting which domains were represented or absent and which were most salient to our population. RESULTS: Participants' discussions of utility often involved multiple domains and revealed the variety of ways in which receiving sequencing results can impact one's life. Results demonstrated that an individual's perception of utility can change over the life course when sequenced at a relatively young age and may be influenced by the resources available to them to act on the results. CONCLUSION: Our findings demonstrate the relevance of a multifaceted perceived utility model for a diverse adult population at risk for hereditary cancer. We identified refinements that could make the model more robust, including emphasizing the overlapping nature of the domains and the importance of life stage and personal resources to the perception of utility.


Subject(s)
Disclosure , Genetic Predisposition to Disease , Adult , Child , Humans , Genomics
4.
J Adolesc Health ; 73(4): 753-760, 2023 10.
Article in English | MEDLINE | ID: mdl-37389531

ABSTRACT

PURPOSE: This study assessed flavored tobacco use among adolescent e-cigarette, cigarette, cigar, hookah, and smokeless tobacco users; specific e-cigarette flavor preferences; risk profiles of youth that use various flavors; and the impact of survey question wording on prevalence. METHODS: Cross-sectional data from 4,956 California adolescent participants (aged 12-17 years) in the Teens, Nicotine, and Tobacco 2021-2022 online panel survey estimated the survey-weighted prevalence of flavored tobacco use. An embedded randomized experiment assessed survey wording effects (i.e., any vs. "usual" flavor use). Qualitative data from four contemporaneous cycles of Teens, Nicotine, and Tobacco focus groups with California adolescents (N = 63) added themes relevant to the quantitative findings. RESULTS: 88.1% of current any tobacco users reported flavored tobacco use in the past 30 days. Flavor use was lowest for cigarettes (66.7%) and highest for hookah (92.8%). Fruit was the most popular e-cigarette flavor (51.6% any use; 28.8% usual use). E-cigarette users also commonly reported use of candy and cooling flavors. Sweet flavors were used most often among adolescents otherwise at low risk of tobacco use. Survey item format did not meaningfully affect overall prevalence of flavored product use but did impact reports of specific e-cigarette flavors. Focus group participants described sweet and fruity flavors as a motivating factor in their own e-cigarette use and as designed to appeal to children. DISCUSSION: Despite local policies, flavored tobacco use remains common among California adolescents. Survey items asking about any flavor use rather than usual use provide more information without affecting the overall prevalence of flavored tobacco use.


Subject(s)
Electronic Nicotine Delivery Systems , Tobacco Products , Child , Adolescent , Humans , Nicotine , Cross-Sectional Studies , Flavoring Agents , California/epidemiology
5.
Nutrients ; 15(12)2023 Jun 13.
Article in English | MEDLINE | ID: mdl-37375632

ABSTRACT

The very-low-calorie KD (VLCKD) is characterized by a caloric intake of under 800 kcal/day divided into less than 50 g/day of carbohydrate (13%) and 1 to 1.5 g of protein/kg of body weight (44%) and 43% of fat. This low carbohydrate intake changes the energy source from glucose to ketone bodies. Moreover, clinical trials have consistently shown a beneficial effect of VLCKD in several diseases, such as heart failure, schizophrenia, multiple sclerosis, Parkinson's, and obesity, among others. The gut microbiota has been associated with the metabolic conditions of a person and is regulated by diet interactions; furthermore, it has been shown that the microbiota has a role in body weight homeostasis by regulating metabolism, appetite, and energy. Currently, there is increasing evidence of an association between gut microbiota dysbiosis and the pathophysiology of obesity. In addition, the molecular pathways, the role of metabolites, and how microbiota modulation could be beneficial remain unclear, and more research is needed. The objective of the present article is to contribute with an overview of the impact that VLCKD has on the intestinal microbiota composition of individuals with obesity through a literature review describing the latest research regarding the topic and highlighting which bacteria phyla are associated with obesity and VLCKD.


Subject(s)
Diet, Ketogenic , Gastrointestinal Microbiome , Humans , Weight Loss , Obesity/metabolism , Body Weight , Carbohydrates
6.
J Genet Couns ; 32(4): 870-886, 2023 08.
Article in English | MEDLINE | ID: mdl-36938783

ABSTRACT

The objective of this study was to identify interpretation challenges specific to exome sequencing and errors of potential clinical significance in the context of genetic counseling for adults at risk for a hereditary cancer syndrome. Thirty transcripts of interpreter-mediated telephone results disclosure genetic counseling appointments were coded for errors by bilingual researchers, and the coders applied an overall rating to denote the degree to which the errors interfered with communication overall. Genetic counselors reviewed a subset of errors flagged for potential clinical significance to identify those likely to have clinical impact. Qualitative interviews with 19 interpreters were analyzed to elucidate the challenges they face in interpreting for genetic counseling appointments. Our analysis identified common interpretation errors such as raising the register, omissions, and additions. Further, we found errors specific to genetic counseling concepts and content that appeared to impact the ability of the genetic counselor to accurately assess risk. These errors also may have impacted the patient's ability to understand their results, access appropriate follow-up care, and communicate with family members. Among interpreters' strengths was the use of requests for clarification; in fact, even more use of clarification would have been beneficial in these encounters. Qualitative interviews surfaced challenges stemming from the structure of interpreter work, such as switching from medical and nonmedical interpretations without substantial breaks. Importantly, while errors were frequent, most did not impede communication overall, and most were not likely to impact clinical care. Nevertheless, potentially clinically impactful errors in communication of genetics concepts may contribute to inequitable care for limited English proficient patients and suggest that additional training in genetics and specialization in healthcare may be warranted. In addition, training for genetic counselors and guidance for patients in working effectively with interpreters could enhance interpreters' transmission of complex genetic concepts.


Subject(s)
Genetic Counseling , Neoplastic Syndromes, Hereditary , Humans , Adult , Genetic Counseling/psychology , Translating , Communication Barriers , Counseling
7.
Cochrane Database Syst Rev ; 12: CD002190, 2022 12 14.
Article in English | MEDLINE | ID: mdl-36515550

ABSTRACT

BACKGROUND: The common cold is a spontaneously remitting infection of the upper respiratory tract, characterised by a runny nose, nasal congestion, sneezing, cough, malaise, sore throat, and fever (usually < 37.8 ºC). Whilst the common cold is generally not harmful, it is a cause of economic burden due to school and work absenteeism. In the United States, economic loss due to the common cold is estimated at more than USD 40 billion per year, including an estimate of 70 million workdays missed by employees, 189 million school days missed by children, and 126 million workdays missed by parents caring for children with a cold. Additionally, data from Europe show that the total cost per episode may be up to EUR 1102. There is also a large expenditure due to inappropriate antimicrobial prescription. Vaccine development for the common cold has been difficult due to antigenic variability of the common cold viruses; even bacteria can act as infective agents. Uncertainty remains regarding the efficacy and safety of interventions for preventing the common cold in healthy people, thus we performed an update of this Cochrane Review, which was first published in 2011 and updated in 2013 and 2017. OBJECTIVES: To assess the clinical effectiveness and safety of vaccines for preventing the common cold in healthy people. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (April 2022), MEDLINE (1948 to April 2022), Embase (1974 to April 2022), CINAHL (1981 to April 2022), and LILACS (1982 to April 2022). We also searched three trials registers for ongoing studies, and four websites for additional trials (April 2022). We did not impose any language or date restrictions. SELECTION CRITERIA: Randomised controlled trials (RCTs) of any virus vaccine compared with placebo to prevent the common cold in healthy people. DATA COLLECTION AND ANALYSIS: We used Cochrane's Screen4Me workflow to assess the initial search results. Four review authors independently performed title and abstract screening to identify potentially relevant studies. We retrieved the full-text articles for those studies deemed potentially relevant, and the review authors independently screened the full-text reports for inclusion in the review, recording reasons for exclusion of the excluded studies. Any disagreements were resolved by discussion or by consulting a third review author when needed. Two review authors independently collected data on a data extraction form, resolving any disagreements by consensus or by involving a third review author. We double-checked data transferred into Review Manager 5 software. Three review authors independently assessed risk of bias using RoB 1 tool as outlined in the Cochrane Handbook for Systematic Reviews of Interventions. We carried out statistical analysis using Review Manager 5. We did not conduct a meta-analysis, and we did not assess publication bias. We used GRADEpro GDT software to assess the certainty of the evidence and to create a summary of findings table.  MAIN RESULTS: We did not identify any new RCTs for inclusion in this update. This review includes one RCT conducted in 1965 with an overall high risk of bias. The RCT included 2307 healthy young men in a military facility, all of whom were included in the analyses, and compared the effect of three adenovirus vaccines (live, inactivated type 4, and inactivated type 4 and 7) against a placebo (injection of physiological saline or gelatin capsule). There were 13 (1.14%) events in 1139 participants in the vaccine group, and 14 (1.19%) events in 1168 participants in the placebo group. Overall, we do not know if there is a difference between the adenovirus vaccine and placebo in reducing the incidence of the common cold (risk ratio 0.95, 95% confidence interval 0.45 to 2.02; very low-certainty evidence). Furthermore, no difference in adverse events when comparing live vaccine preparation with placebo was reported. We downgraded the certainty of the evidence to very low due to unclear risk of bias, indirectness because the population of this study was only young men, and imprecision because confidence intervals were wide and the number of events was low. The included study did not assess vaccine-related or all-cause mortality.  AUTHORS' CONCLUSIONS: This Cochrane Review was based on one study with very low-certainty evidence, which showed that there may be no difference between the adenovirus vaccine and placebo in reducing the incidence of the common cold. We identified a need for well-designed, adequately powered RCTs to investigate vaccines for the common cold in healthy people. Future trials on interventions for preventing the common cold should assess a variety of virus vaccines for this condition, and should measure such outcomes as common cold incidence, vaccine safety, and mortality (all-cause and related to the vaccine).


Subject(s)
Adenovirus Vaccines , Common Cold , Child , Humans , Male , Adenovirus Vaccines/adverse effects , Common Cold/prevention & control , Incidence , Systematic Reviews as Topic , Vaccines, Attenuated/adverse effects , Randomized Controlled Trials as Topic
8.
Genet Med ; 24(11): 2228-2239, 2022 11.
Article in English | MEDLINE | ID: mdl-36053287

ABSTRACT

PURPOSE: Effective approaches to communicate genomic information are needed to ensure equitable care. In a randomized controlled superiority trial, we tested a novel practice model that aims to make genetic counseling inclusive, by making the communication accessible, relational, and actionable (ARIA). METHODS: In total, 696 English- and Spanish-speaking patients aged 18 to 49 years, enriched for individuals from historically underserved backgrounds, were randomized in 1:1 ratio to ARIA or usual care. Primary outcomes were accuracy of recall, communication satisfaction, and perceived understanding. In total, 33 participants completed qualitative interviews. RESULTS: Recall and understanding were high for all participants. ARIA participants scored higher on the relationship scale of communication satisfaction (mean difference = 0.09, 95% CI = <0.01 to 0.17). Moderator analyses of communication satisfaction showed that those with lower health literacy reported less communication difficulty in ARIA and those using medical interpreters reported greater communication ease in ARIA. No significant difference was found on other primary and secondary outcomes. Qualitative data enhanced understanding of how and why ARIA can be effective. CONCLUSION: This study provides evidence that a genetic counseling intervention that focuses on specific communication skills to enhance relationship-building, patient engagement, and comprehension can be effective with all patients and may be especially valuable for patients of lower health literacy and Spanish-speakers who use a medical interpreter.


Subject(s)
Communication , Genetic Counseling , Health Literacy , Humans , Data Collection , Genetic Counseling/methods , Hispanic or Latino
9.
Per Med ; 19(2): 125-138, 2022 03.
Article in English | MEDLINE | ID: mdl-35171038

ABSTRACT

Aim: As genomic medicine reaches more diverse populations, there is an increased need for healthcare interpreters who understand and can effectively interpret genomics concepts. Methods: We designed a course for healthcare interpreters on exome sequencing to enhance their preparedness for genomic results disclosure appointments in the Cancer Health Assessments Reaching Many (CHARM) study and beyond. The course was evaluated via pre/post surveys and qualitative interviews. Results: 23 interpreters completed the course; 87% rated it as excellent/very good. Improved pre/post confidence interpreting for genetics appointments was statistically significant; pre/post knowledge was not. Interviews highlighted the need for more discussion time. Conclusion: While the course increased confidence interpreting for exome sequencing results appointments, suggested modifications could enhance knowledge and retention of key concepts.


Subject(s)
Physician-Patient Relations , Translating , Exome/genetics , Genomics , Humans , Exome Sequencing
10.
J Public Health Dent ; 82(1): 99-104, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34981539

ABSTRACT

OBJECTIVES: The purpose of this study is to describe Mexican-American parents' experiences navigating the dental care system for their children. METHODS: Thirty in-depth qualitative interviews were conducted with Spanish-speaking caregivers of young children in an urban county of Northern California, asking about their experiences navigating dental care for their children. Interviews were digitally recorded, translated, transcribed, coded, and analyzed using standard qualitative procedures. RESULTS: Caregivers reported challenges that highlight how various aspects of navigating the health care system are elemental to oral health literacy. These included making appointments, finding a provider they trust, using their dental insurance, and communicating with the dental care provider. CONCLUSIONS: When addressing oral health literacy, it is important to consider the navigational components to improve children's oral health literacy.


Subject(s)
Hispanic or Latino , Mexican Americans , Child , Child, Preschool , Dental Care , Humans , Oral Health , Parents
11.
Genet Med ; 24(3): 610-621, 2022 03.
Article in English | MEDLINE | ID: mdl-34906471

ABSTRACT

PURPOSE: Understanding the motivations and concerns of patients from diverse populations regarding participation in implementation research provides the needed evidence about how to design and conduct studies for facilitating access to genetics services. Within a hereditary cancer screening study assessing a multifaceted intervention, we examined primary care patients' motivations and concerns about participation. METHODS: We surveyed and interviewed study participants after they enrolled, surveyed those who did not complete enrollment, and used descriptive qualitative and quantitative methods to identify motivations and concerns regarding participation. RESULTS: Survey respondents' most common motivations included a desire to learn about their future risk (81%), receiving information that may help family (58%), and a desire to advance research (34%). Interviews revealed 3 additional important factors: affordability of testing, convenience of participation, and clinical relationships supporting research decision-making. Survey data of those who declined enrollment showed that the reasons for declining included concerns about privacy (38%), burdens of the research (19%), and their fear of not being able to cope with the genetic information (19%). CONCLUSION: Understanding the facilitating factors and concerns that contribute to decisions about research may reveal ways to improve equity in access to care and research that could lead to greater uptake of genomic medicine across diverse primary care patient populations.


Subject(s)
Motivation , Neoplasms , Genetic Predisposition to Disease , Humans , Primary Health Care , Risk Assessment , Surveys and Questionnaires
14.
Pesqui. prát. psicossociais ; 16(2): 1-20, maio-ago. 2021.
Article in Spanish | LILACS, Index Psychology - journals | ID: biblio-1351255

ABSTRACT

Este artículo tiene como objetivo analizar procesos de base comunitaria de construcción de paz como caminos de resistencia y re-existencia en territorios históricamente marcados por violencias, subalternidad y vulnerabilidad en Colombia y Brasil. Se realiza una conversación entre el proceso del proyecto de extensión universitaria Juventude(S): intervenções urbanas de arte-cultura no território, el proceso del Coletivo Cultura Zona Oeste, ambos en Rio de Janeiro, Brasil, el proceso del Grupo Juvenil Prodesarrollo de Micoahumado, Sur de Bolívar, Colombia, y el proceso del Refugio Humanitario por la vida, la paz y la vivienda digna, en la localidad de Ciudad Bolívar, en el sur de Bogotá. Creemos que una Psicosociología crítica, fundamentada en presupuestos contra hegemónicos descoloniales puede subvencionar la reflexión sobre las experiencias de personas y colectivos que vivencian territorios marcados por una desigualdad social surgiendo de procesos colonizadores y que engendran procesos de lucha y re-existencias delante de la muerte.


Este artigo objetiva analisar os processos de base comunitária de construção da paz como caminhos de resistência e re-existência em territórios historicamente marcados por violências, subalternidade e vulnerabilidade na Colômbia e no Brasil. Apresenta a conversa entre o processo do projeto de extensão universitária Juventude(S): intervenções urbanas de arte-cultura no território, o processo do Coletivo Cultura Zona Oeste, ambos no Rio de Janeiro, Brasil, o processo do Grupo Juvenil Prodesarrollo de Micoahumado, Sul do departamento de Bolívar, no norte da Colômbia, e o processo do Refúgio Humanitário pela vida, a paz e a vida digna, na localidade de Ciudad Bolívar, no sul de Bogotá. Acreditamos que uma Psicossociologia crítica, fundamentada nos pressupostos contra-hegemônicos descoloniais podem subsidiar a reflexão sobre as experiências de pessoas e coletivos que vivenciam territórios marcados por uma desigualdade social surgida de processos colonizadores y que engendram processos de luta e re-existências diante da morte.


This article aims to analyze community-based peace-building processes as paths of resistance and re-existence in territories historically marked by violence, subordination and vulnerability in Colombia and Brazil. It presents the conversation between the Humanitarian Refuge for Life, Peace and Decent Life process in Ciudad Bolívar in the south of Bogotá, the process of the Coletivo Cultura Zona Oeste in Rio de Janeiro, the process of the Youth(S) university extension project: urban interventions of art-culture in the territory also in Rio de Janeiro, Brazil and the process of Grupo Juvenil Prodesarrollo de Micoahumado, Sur de Bolívar Colombia. We believe that a critical Psychosociology, based on the assumptions against decolonial hegemonies can support the reflection on the experiences of people and collectives that experience territories marked by a social inequality arising from colonizing process and that engender processes of struggle and re-existences in the face of death.


Subject(s)
Psychology, Social , Socioeconomic Factors , Violence , Disaster Vulnerability , Psychosocial Support Systems
15.
Patient Educ Couns ; 104(5): 969-978, 2021 05.
Article in English | MEDLINE | ID: mdl-33549385

ABSTRACT

OBJECTIVE: To describe the training and early implementation of the ARIA model of genetic counseling (Accessible, Relational, Inclusive, Actionable). METHODS: As part of the Cancer Health Assessments Reaching Many (CHARM) study, an interdisciplinary workgroup developed the ARIA curriculum and trained genetic counselors to return exome sequencing results using the ARIA model. CURRICULUM: The ARIA curriculum includes didactic elements, discussion, readings, role plays, and observations of usual care genetic counseling sessions. The ARIA model provides the skills and strategies needed for genetic counseling to be accessible to all patients, regardless of prior knowledge or literacy level; involves appropriate psychological and social counseling without overwhelming the patient with information; and leaves the patient with clear and actionable next steps. CONCLUSION: With sufficient training and practice, the ARIA model appears to be feasible, with promise for ensuring that genetic counselors' communication is accessible, relational, inclusive and actionable for the diverse patients participating in genomic medicine. PRACTICE IMPLICATIONS: ARIA offers a coherent set of principles and strategies for effective communication with patients of all literacy levels and outlines specific techniques to practice and incorporate these skills into routine practice. The ARIA model could be integrated into genetic counseling training programs and practice, making genetic counseling more accessible and meaningful for all patients.


Subject(s)
Counselors , Curriculum , Genetic Counseling , Communication , Genomics , Humans
16.
AJOB Empir Bioeth ; 12(1): 1-11, 2021.
Article in English | MEDLINE | ID: mdl-32981477

ABSTRACT

BACKGROUND: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges.


Subject(s)
Attitude , Biomedical Research/ethics , Genomics , Health Literacy , Informed Consent , Literacy , Adult , Bioethics , Comprehension , Ethics, Research , Female , Genetic Testing , Health Services Accessibility , Humans , Male , Middle Aged , Neoplasms/genetics , Qualitative Research , Research Subjects , Risk Assessment , Surveys and Questionnaires , Young Adult
17.
Am J Emerg Med ; 45: 156-161, 2021 Jul.
Article in English | MEDLINE | ID: mdl-33046317

ABSTRACT

AIMS: In this work, the survival and mortality data of 54 consecutive patients admitted to the Intensive Care Unit (ICU) and suffering from severe respiratory insufficiency imputable to viral SARS - CoV - 2 infection were analyzed and shared, after a critical review of the evidence in order to optimize the most dedicated clinical and treatment strategy, for a future 'targeted' management in the care of the possible return flu outbreak. METHODS: At our Emergency Department of the Crema Hospital, from the beginning of the pandemic until the end of June 2020, 54 consecutive patients admitted to ICU suffering from severe acute respiratory infection (SARI) and severe respiratory distress (ARDS) attributable to viral SARS - CoV - 2 infection were recruited. The recruitment criterion was based on refractory hypoxia, general condition and clinical impairment, comorbidities and CT images. The incoming parameters of the blood chemistry and radiology investigations and the timing of the gold - tracheal intubation were compared. Medical therapy was based on the application of shared protocols. RESULTS: The onset of symptoms was varyng, i.e. within the range of 1-14 days. The average time from the admission to the emergency room to the admission to intensive care was approximately 120 h. The average number of days of hospitalization in the ICU was 28 days. With a majority of male patients, the most significant age group was between 60 and 69 years. There were 21 deaths and, compared to the survivors, the deceased ones were older at an average age of about 67 years (vs an average age of the survivors of about 59 years). From the available data entering the ICU, the surviving patients presented average better values of oximetry and blood gas analysis, with a lower average dosage of D-Dimer than the deceased. Ones with a presence of bilateral pneumonia in all patients, the worsening of the ARDS occurred in 31 patients. 9 out of 25 patients early intubated died, while 12 out of 23 patients died when intubation was performed after 24 h of non-invasive ventilation. The presence of multiple comorbidities was shown in 17 of 28 patients and revealed an additional adverse prognostic factor. Also, more than one complication in the same patient were detected; after respiratory worsening, renal failure was more frequently found in 16 patients. Some particular complications such as lesions induced by ventilation with barotrauma mechanism (VILI), ischemic heart disease and the appearance of central and peripheral neurological events were detected too. CONSIDERATIONS: SARS - CoV - 2 disease is caused by a new coronavirus that has its main route of transmission through respiratory droplets and close contact, resulting in a sudden onset of the clinical syndrome with acute respiratory infection (SARI) and severe respiratory distress (ARDS). But it can also appear with other symptoms such as gastrointestinal or neurological events, as to be considered as a disease with multisystem phenotype. This pathology evolves towards a serious form of systemic disease from an acute lung damage to venous and arterial thromboembolic complications and multi-organ failure, mostly associated with high mortality. All patients received empirical or targeted antibiotic therapy for prevention and control of infections of potential pathogens, together with low molecular weight heparin therapy. The majority of patients was subjected to the off - label protocol with antivirals and hydroxychloroquine therapy, we used cortisone support therapy under surveillance and in 3 cases the protocol with anti - IL6 monoclonal antibody (Tolicizumab). In a simplified classification of the tomographic examination of the chest, mostly 3D and 2C lesions were found in the deceased patients with a prevalence of severe and moderate forms, whilst in the survivors the distribution appears with a prevalence of medium and moderate forms. Among the intubated patients, 21 patients, all suffering from worsening ARDS, died whilst there was no mortality in patients subjected to non-invasive ventilation it so. The heterogeneity of the respiratory syndromes and the presence of multiple comorbidities represent an unfortunate prognostic factor. Among the complications, besides the respiratory worsening, renal failure, liver failure and the state of sepsis were most frequently found; less frequent complications were lesions induced by ventilation with a barotrauma mechanism, ischemic heart disease, the appearance of central neurological events of sensory alterations, meningo - encephalitis and cerebral hemorrhage, and peripheral neurological events with polyneuro - myopathies. Mechanical ventilation can adversely affect the prognosis due to lung damage induced, protective ventilation remains the necessary treatment during severe hypoxia in patients with SARS - CoV - 2. The essential prerequisite remains the search for optimal 'customized' values since conditions can vary from patient to patient and, in the same patient, during different times of ventilation. CONCLUSIONS: In these extraordinary circumstances, our reality was among the most affected and was able to hold the impact thanks to the immediate great response set in place by the operators, although it costed us an effort especially the one to try to guarantee a high quality level of assistance and care compared to the huge wave of patients in seriously bad conditions. Further research on this heterogeneous pathology and data sharing could help identify a more dedicated clinical decision-making and treatment pathway that, together with a resource planning, would allow us to better face any new disease outbreak.


Subject(s)
COVID-19/therapy , Critical Care/methods , Hospitalization/statistics & numerical data , Intensive Care Units , Pandemics , Respiration, Artificial/methods , SARS-CoV-2 , Adult , Aged , Aged, 80 and over , COVID-19/epidemiology , Female , Humans , Italy/epidemiology , Male , Middle Aged , Retrospective Studies
18.
Psicol. pesq ; 14(1): 37-56, jan.-abr. 2020. graf, tab
Article in Portuguese | LILACS-Express | LILACS, Index Psychology - journals | ID: biblio-1115118

ABSTRACT

O presente estudo teve como objetivos: a tradução e adaptação de um questionário de clima de escola para estudantes portugueses (Delaware School Climate Survey-Student - DSCS-S); compreender as relações entre clima de escola e envolvimento dos alunos na escola e o seu sucesso escolar anterior. Foi também aplicada a Escala Quadridimensional de Envolvimento dos Estudantes (EAE-E4D) a 442 estudantes de escolas básicas de Évora, Portugal. Os resultados demonstram a importância das relações professor/a - aluno/a na forma como o clima de escola se relaciona com percursos escolares bem-sucedidos. Foram encontradas diferenças significativas no envolvimento afetivo e comportamental entre alunos com e sem sucesso escolar. Verificou-se uma correlação positiva e moderada entre o clima de escola e o envolvimento na escola.


The present study aimed to: 1) translate and adapt a Portuguese school climate questionnaire (Delaware School Climate Survey-Student - DSCS-S); 2) understand the relationships between school climate and student involvement in school and their previous school success. The Four-Dimensional Scale of Student Involvement (EAE-E4D) and the adapted version of the DSCS-S were applied to a sample of 442 students from 7th - 9th grades of the city of Évora, Portugal. The main results demonstrate the importance of teacher - student relationships in the way the school climate is related to successful school pathways. Significant differences were found in the affective and behavioral involvement among students with and without school success. There was a positive and moderate correlation between the school climate and the students' involvement in school.


El presente estudio tuvo como objetivos: la traducción y adaptación de un cuestionario acerca del clima escolar para estudiantes portugueses (Delaware School Climate Survey-Student - DSCS-S); comprender las relaciones entre el clima escolar y la participación de los alumnos en la escuela y su éxito escolar anterior. Además, fue aplicada la Escala Cuatridimensional de Participación de los Estudiantes (EAE-E4D) a 442 estudiantes de escuelas básicas de Évora, Portugal. Los resultados muestran la importancia de las relaciones profesor/a- alumno/a en la medida en que el clima escolar se relaciona con los logros en las trayectorias escolares. Se encontraron diferencias significativas en la participación afectiva y comportamental entre alumnos con y sin logros académicos. Se observa una correlación positiva y moderada entre el clima escolar y la participación en la escuela.

19.
Dermatol Ther ; 33(1): e13182, 2020 01.
Article in English | MEDLINE | ID: mdl-31820540

ABSTRACT

The objective of our study was to describe the effectiveness and safety of oral dutasteride (OD) for male androgenetic alopecia in real clinical practice. A retrospective, monocentric, and descriptive study was designed. Male patients with androgenetic alopecia that had received OD for at least 12 months were included. Three or less capsules of 0.5 mg per week were considered low doses. Therapeutic response was assessed by comparison of pre- and post-treatment (at month 12) clinical images by three independent dermatologists with expertise in hair disorders, using a four-point scale (worsening, stabilization, mild improvement or marked improvement). In all, 307 patients with a mean age of 35.3 years (range 18-79) were included. Eight patients (2.6%) required the discontinuation of the drug due to decreased libido (n = 4), gynecomastia (n = 2), mood disorder (n = 1) and erectile dysfunction (n = 1). All these AE resolved after stopping the medication. No AE were detected in patients receiving low doses of OD. The effectiveness was evaluated in the subgroup of 42 patients (13.7%) who received OD in monotherapy: 38 patients improved (90%), 10 of them (23.8%) presenting a marked improvement, 4 patients (9.5%) were stable and none patient worsened. In conclusion, OD is an effective treatment for male androgenetic alopecia in real clinical practice, presenting a good safety profile, especially at lower doses.


Subject(s)
5-alpha Reductase Inhibitors/administration & dosage , Alopecia/drug therapy , Dutasteride/administration & dosage , 5-alpha Reductase Inhibitors/adverse effects , Administration, Oral , Adolescent , Adult , Aged , Dutasteride/adverse effects , Humans , Male , Middle Aged , Retrospective Studies , Treatment Outcome , Young Adult
20.
Porto Biomed J ; 4(2): e29, 2019.
Article in English | MEDLINE | ID: mdl-31595259

ABSTRACT

Physical activity during pregnancy assumes an important role in the health of both the pregnant and newborn. Given that physical activity tends to decrease throughout this period, it is essential to inform and encourage pregnant women to acquire healthy lifestyles, enabling them to improve their physical and psychological well-being. This study aims to evaluate the impact of an intervention program on pregnant, newborn, and gestation outcomes, by increasing physical activity levels during this important period of woman's life. This study will be conducted with 410 pregnant women in the first trimester. Participants will be recruited through the central hospital or community centers. Following consent and baseline data collection, pregnant women who do not have any medical or obstetric contraindication for physical exercise, will be assigned to the control or intervention groups. There will be 3 assessment periods: baseline (time 1-between the 7th and 10th week of gestation), after the intervention (time 2-between the 1st and 3rd day after delivery), and follow-up (time 3-1 month after delivery). The intervention group will have an intervention program, which comprises 2 terms: (1) teachers' training delivered by researchers and (2) intervention delivered to pregnant women by trained teachers, which consists in 3 weekly classes of physical exercise (45/50 min each). The control group will have the standard care that is usually provided by health professionals. The research has been approved by the Subcommittee on Ethics for the Life Sciences and Health of the University of Minho (id: SECVS 086/2015) and by the Ethics Committee for Health from the Central Hospital (id: 056/2014). There is a registration in clinical trials.gov, with the reference NCT03045237 (02/2017). This study has the potential to increase pregnant's physical activity levels and contribute to programs and policies developed to optimize lifestyles during pregnancy and with implications in newborn outcomes.

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