RESUMO
BACKGROUND: Making high-quality health and care information available to members of the general public is crucial to support populations with self-care and improve health outcomes. While attention has been paid to how the public accesses and uses health information generally (including personal records, commercial product information or reviews on healthcare practitioners and organisations) and how practitioners and policy-makers access health research evidence, no overview exists of the way that the public accesses and uses high quality health and care information. PURPOSE: This scoping review aimed to map research evidence on how the public accesses and uses a specific type of health information, namely health research and information that does not include personal, product and organisational information. METHODS: Electronic database searches [CINAHL Plus, MEDLINE, PsycInfo, Social Sciences Full Text, Web of Science and SCOPUS] for English language studies of any research design published between 2010-2022 on the public's access and use of health research or information (as defined above). Data extraction and analysis was informed by the Joanna Briggs Institute protocol for scoping reviews, and reported in accordance with the PRISMA extension for scoping reviews. RESULTS: The search identified 4410 records. Following screening of 234 full text studies, 130 studies were included. One-hundred-and-twenty-nine studies reported on the public's sources of health-research or information; 56 reported the reasons for accessing health research or information and 14 reported on the use of this research and information. The scoping exercise identified a substantial literature on the broader concept of 'health information' but a lack of reporting of the general public's access to and use of health research. It found that 'traditional' sources of information are still relevant alongside newer sources; knowledge of barriers to accessing information focused on personal barriers and on independent searching, while less attention had been paid to barriers to access through other people and settings, people's lived experiences, and the cultural knowledge required. CONCLUSIONS: The review identified areas where future primary and secondary research would enhance current understanding of how the public accesses and utilises health research or information, and contribute to emerging areas of research.
Assuntos
Atenção à Saúde, Grupos Populacionais, Humanos, Atenção à Saúde/métodosRESUMO
OBJECTIVES: Conspiracy theories are associated with significant COVID-19 health consequences including lower engagement with protective behaviours. This study uses sensemaking theory, a process of constructing meanings through interpersonal exchanges that enable people to interpret their world to explain the theoretical process underlying the development of conspiratorial beliefs around COVID-19 within Black African and Caribbean communities in the UK. DESIGN: Qualitative, in-depth interviews were used. METHODS: Twenty-eight members of the communities were recruited: semi-structured interviews were analysed using grounded theory. RESULTS: Our findings provide an explanation of how an environment of crisis combined with current and historical mistrust, perceived injustice and inequality provided a context in which alternative conspiracy narratives could thrive. The nature of these conspiratorial beliefs made more sense to many of our respondent's than institutional sources (such as the UK Government). Critically, these alternative beliefs helped respondents shape their decision-making, leading to non-engagement with COVID protective behaviours. CONCLUSIONS: We conclude that the uncertainty of the pandemic, combined with historical and contemporary perceived injustice and mistrust, and a lack of specific identity-aligned messaging, created a perfect environment for conspiratorial sense-making to thrive. This alternative sensemaking was inconsistent with the health-protection messaging espoused by the Government. To ensure all groups in society are protected, and for health promotion messages to take purchase, the experiences of different target audiences must be taken into account, with sensemaking anchored in lived experience.
Assuntos
COVID-19, Humanos, Etnicidade, Teoria Fundamentada, Promoção da Saúde, Reino UnidoRESUMO
OBJECTIVE: Migrants and ethnic minority groups have been disproportionately impacted by COVID-19 and have lower levels of vaccine uptake in some contexts. We aimed to determine the extent and nature of social media use in migrant and ethnic minority communities for COVID-19 information, and implications for preventative health measures including vaccination intent and uptake. DESIGN: A systematic review of published and grey literature following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched databases including Embase, Web of Science, PubMed NIH, CINAHL, facilitated through the WHO Global Research on COVID-19 database from 31 December 2019 to 9 June 2021. ELIGIBILITY CRITERIA FOR STUDY SELECTION: Research reporting the use of social media by migrants and/or ethnic minority groups in relation to COVID-19. DATA EXTRACTION: We extracted data on key outcomes, study design, country, population under study and sample size. RESULTS: 1849 unique records were screened, and 21 data sources were included, including populations in the UK, USA, China, Jordan, Qatar and Turkey. We found evidence of consistent use of a range of social media platforms for COVID-19 information in some migrant and ethnic minority populations (including WeChat, Facebook, WhatsApp, Instagram, Twitter, YouTube), which may stem from difficulty in accessing COVID-19 information in their native languages or from trusted sources. Some evidence suggested circulating misinformation and social media use may be associated with lower participation in preventative health measures, including vaccine intent and uptake, findings which are likely relevant to multiple population groups. CONCLUSIONS: Social media platforms are an important source of information about COVID-19 for some migrant and ethnic minority populations. Urgent actions and further research are now needed to better understand effective approaches to tackling circulating misinformation, and to seize on opportunities to better use social media platforms to support public health communication and improve vaccine uptake. REGISTRATION: This study has been registered with PROSPERO (CRD42021259190).
Assuntos
COVID-19, Mídias Sociais, Migrantes, Humanos, Grupos Minoritários, Etnicidade, COVID-19/epidemiologia, COVID-19/prevenção & controle, Minorias Étnicas e Raciais, Pandemias/prevenção & controleRESUMO
The recognition and representation of BAME community as 'high risk' of Covid-19 in the UK presents both a health and an identity threat to this ethnic group. This study employed thematic analysis to explore response to these threats as related by a sample of 13 middle class members of the South Asian community. This work advances both health and identity psychological theory by recognising the affinity between expressions of health efficacy and identity. Our findings identify South Asian intragroup stigmatisation and commonalities that have implications for the promotion of health behaviour and health communications for minority groups.
Assuntos
COVID-19, Povo Asiático, Etnicidade, Humanos, Grupos Minoritários/psicologia, Reino UnidoRESUMO
BACKGROUND: Multiple sclerosis (MS) is a complex disease with many therapeutic options. Little is known about how neurologists select particular disease-modifying therapies (DMTs) for their patients. OBJECTIVE: To understand how neurologists make decisions regarding the prescription of DMTs for patients with MS, and to explore neurologists' experiences with individual DMTs. METHODS: From December 2012 to January 2013, members of a nationwide physician market research panel were sent an online study invitation with a link to a survey website. Eligible neurologists were included if they currently practice medicine in the United States, and if they treat ≥20 patients with MS. RESULTS: A total of 102 neurologists (n=63 general neurologists; n=39 MS specialists; 81.4% male) completed the survey. The mean (standard deviation) number of years in practice since completing medical training was 16.4 (8.6) years. Overall, the most commonly prescribed DMTs were subcutaneous interferon (IFN) ß-1a and glatiramer acetate; approximately 5.5% of patients were untreated. The most important attributes of DMT medication selection were (in order of importance) efficacy, safety, tolerability, patient preference, and convenience. The DMT with the highest neurologist-reported percentage of patients who were "Very/Extremely Satisfied" with their therapy was fingolimod (31.0%), followed by glatiramer acetate (13.9%; P=0.017). Compared with fingolimod (94.0%), significantly fewer (P<0.05) neurologists reported that "All/Most" of their patients were adherent to treatment with glatiramer acetate (78.0%), subcutaneous IFN ß-1a (84.0%), and IFN ß-1b (75.0%); no significant differences were observed with intramuscular IFN ß-1a (92.9%; P=0.75). Patients' calls to neurologists' offices were most commonly related to side effects for all self-injectable DMTs, whereas calls about fingolimod primarily involved insurance coverage issues. CONCLUSION: Our survey results showed that very few patients with MS did not received any DMT. Among the DMTs available at the time of the survey, neurologists reported that patients were most satisfied with, and adherent to, fingolimod, but these patients also faced more problems with insurance coverage when compared with those taking self-injectable DMTs.
RESUMO
While the burden of HIV disease is well documented, the value of non-nucleoside reverse transcriptase inhibitor (NNRTI)-based therapy regimens in reducing patient burden is not well understood. The purpose of this study was to examine patient-reported health among those receiving NNRTI-based regimens to understand their incremental value in reducing the burden of HIV. We conducted a structured literature review using PubMed to identify NNRTI trials utilizing validated patient-reported outcome (PRO) instruments during 2005-2011. The search strategy included a PubMed search to identify relevant studies based on disease, instrument, PRO, and NNRTI medication terms; and a manual search of bibliographies of identified papers. Data abstracted from each study included study type, treatment regimen(s), and PRO results. Of 11 trials identified, 8 (73%) reported significance of changes in a PRO over time and 10 (91%) reported significance of PRO changes between groups. Several domains were assessed, with significant findings (between or within groups) observed in: physical health/well-being (n = 5), emotional status/well-being (n = 2), symptoms (n = 2), anxiety (n = 2), gastrointestinal upset (n = 2), psychological health (n = 1), functional and global well-being (n = 1), fatigue/energy (n = 1), depression (n = 1), change in body appearance (n = 1), pain (n = 1), headache (n = 1), bad dreams/nightmares (n = 1), problems having sex (n = 1), and general health perception (n = 1). In conclusion, NNRTIs have been observed most frequently to improve patient-reported physical health and well-being. Treatments are needed that can also reduce patient burden in areas of emotional well-being, cognitive functioning, and overall symptom profile.
Assuntos
Infecções por HIV/tratamento farmacológico, HIV-1/efeitos dos fármacos, Avaliação de Resultados em Cuidados de Saúde, Satisfação do Paciente, Inibidores da Transcriptase Reversa/uso terapêutico, Efeitos Psicossociais da Doença, Humanos, Perfil de Impacto da DoençaRESUMO
BACKGROUND: Patient-reported outcomes (PROs) may provide valuable information to clinicians and patients when choosing initial antiretroviral therapy. OBJECTIVE: To identify and classify PRO instruments used to measure treatment effects in clinical trials evaluating NNRTIs. METHODS: We conducted a structured literature review using PubMed to identify NNRTI trials published from March 2003 to February 2013. Studies identified--based on disease, instrument, PRO, and NNRTI medication terms were reviewed--to identify PRO instruments. Domains measured within each instrument were recorded to understand key areas of interest in NNRTIs. RESULTS: Of 189 articles reviewed, 27 validated instruments were administered in 26 unique trials, with a mean of 1.9 instruments (median: 1; range: 1-7) per trial. The Medical Outcomes Study HIV Health Survey (MOS-HIV) was the most commonly used instrument (n = 8 trials). Seventeen trials (65%) included at least one multidimensional health-related quality of life (HRQL) instrument (HIV-targeted, n = 11; general, n = 8). Other validated instruments measured sleep (n = 5), depression (n = 5), anxiety (n = 4), psychiatric symptoms (n = 2), beliefs about HIV medications (n = 2), HIV symptoms (n = 1), and stress (n = 1). CONCLUSIONS: Although review of recent NNRTI trials suggests a lack of consensus on the optimal PRO instruments, a typical battery is comprised of a multidimensional HRQL measure coupled with one or more symptom measures. Further work is needed to clarify advantages and disadvantages of using specific PRO instruments to measure relevant constructs and to identify the most useful batteries of instruments for NNRTI trials.
Assuntos
Ensaios Clínicos como Assunto, Soropositividade para HIV/tratamento farmacológico, HIV-1/efeitos dos fármacos, Avaliação de Resultados da Assistência ao Paciente, Participação do Paciente, Inibidores da Transcriptase Reversa/uso terapêutico, Inquéritos e Questionários, Feminino, HIV-1/imunologia, Humanos, Masculino, Inibidores da Transcriptase Reversa/farmacologiaRESUMO
BACKGROUND: Fingolimod is the first oral disease-modifying therapy indicated for the treatment of patients with relapsing forms of multiple sclerosis (MS) to reduce the frequency of clinical relapses and delay the progression of physical disability caused by MS. OBJECTIVE: To obtain data from MS patients who have taken fingolimod regarding their treatment choice, first-dose observation (FDO) experience, and treatment satisfaction. METHODS: Patients ≥ 18 years old with physician-diagnosed MS in the United States who had taken at least one dose of fingolimod for the treatment of MS were invited to complete a web-based survey, which captured information on the reasons for starting fingolimod, FDO experience, and treatment satisfaction as measured by the Treatment Satisfaction Questionnaire for Medication (TSQM). A high TSQM scale score denotes high satisfaction. RESULTS: Survey respondents (n = 380; 55% female) had a mean (standard deviation) age of 39.8 (12.6) years, and a mean (standard deviation) duration of MS of 9.8 (10.3) years. Overall, more than 80% of patients reported the first dose was moderately/very/extremely manageable, convenient, and easy to take. Although 80% of patients reported experiencing a side effect with the first dose, most were highly tolerable and only eleven patients (2.9%) reported they were "Not at all" satisfied with the FDO experience. TSQM scale scores were highest for the side effect (79.4), followed by convenience (71.7), effectiveness (70.1), and global satisfaction (68.9) domains; relatively higher scores were observed among treatment-experienced patients. Both treatment-naïve and treatment-experienced patients indicated physician recommendation as the primary reason for starting fingolimod. Among treatment-experienced respondents (n = 273), 58% reported that their first choice for MS treatment would be fingolimod if selecting today. CONCLUSION: Most fingolimod patients were satisfied with their FDO experience. Satisfaction with fingolimod was high and observed higher among treatment-experienced compared to treatment-naïve patients. Additional research is needed to understand key clinical and medication attributes underlying treatment satisfaction with fingolimod and other disease-modifying therapies.
RESUMO
BACKGROUND: Selection of an appropriate patient-reported outcome (PRO) instrument for a clinical trial requires knowledge of the instrument's responsiveness to detecting treatment effects. The purpose of this study was to examine the responsiveness of two health-related quality of life (HRQL) instruments used in clinical trials involving HIV-infected adults: the HIV-targeted Medical Outcomes Study HIV Health Survey (MOS-HIV), and a generic measure, the EuroQol-5D (EQ-5D). METHODS: A systematic review identified clinical trials using the MOS-HIV or EQ-5D to assess outcomes for HIV-infected adults. Data abstracted from each study included study type, treatment regimen(s), PRO results, and effect size (either reported or calculated). Effect size was calculated as the difference between baseline and follow-up mean scores divided by the baseline standard deviation. Magnitude was categorized as small (d=0.20), medium (d=0.50), and large (d=0.80). RESULTS: Between 2005 and 2010, the MOS-HIV was administered in 12 trials. Significant differences were observed between groups and over time in physical health summary (PHS) and mental health summary (MHS) scores (P<0.05) in subjects switching therapy after experiencing Grade-2 adverse events. Effect sizes were medium (0.55 and 0.49 for PHS and MHS, respectively) among treatment-naïve adults beginning therapy (two studies), but negligible among treatment-experienced adults (0.04 and 0.13 for PHS and MHS, respectively; three studies). The EQ-5D was used in five trials between 2001 and 2010. It was responsive to occurrences of adverse events and opportunistic infections, with small-to-medium effect sizes (range 0.30-0.50) in each of its five dimensions. CONCLUSIONS: A systematic review of PRO study results showed both the MOS-HIV and EQ-5D were responsive to changes between groups and/or over time in treatment-naïve HIV-infected patients. These instruments may be used either individually or together in clinical trials to measure changes in HRQL.
Assuntos
Fármacos Anti-HIV/uso terapêutico, Infecções por HIV/psicologia, Adulto, Terapia Antirretroviral de Alta Atividade/psicologia, Infecções por HIV/tratamento farmacológico, Humanos, Avaliação de Resultados em Cuidados de Saúde, Ensaios Clínicos Controlados Aleatórios como Assunto, Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To assess the impact of the Novartis Cardio Metabolic Program--an education, awareness, and health management initiative--on hypertension, hyperlipidemia, diabetes mellitus, and obesity within the Novartis employee population. METHODS: A prospective, 6-month pre-/post assessment to determine improvement in blood pressure (BP) control and risk factors after implementation of Novartis Cardio Metabolic. RESULTS: A total of 238 subjects with cardiovascular risk factors participated. In the hypertension cohort, overall BP control improved from 38% at baseline to 79% at follow-up (P < 0.0001). In the hyperlipidemia cohort, low-density lipoprotein cholesterol control improved significantly between baseline and study end (22% to 34%, P = 0.0004). In the diabetes mellitus cohort, the rate of glycosylated hemoglobin control increased from 83.7% to 86.2% (P = 0.69). There was a significant decrease in body mass index at follow-up (P < 0.0001). CONCLUSION: Novartis Cardio Metabolic educational and health interventions helped to improve health awareness among Novartis employees.
Assuntos
Doenças Cardiovasculares/prevenção & controle, Comportamentos Relacionados com a Saúde, Educação em Saúde/métodos, Promoção da Saúde/métodos, Síndrome Metabólica/terapia, Serviços de Saúde do Trabalhador/métodos, Adulto, Índice de Massa Corporal, Doenças Cardiovasculares/complicações, Diabetes Mellitus/prevenção & controle, Feminino, Conhecimentos, Atitudes e Prática em Saúde, Nível de Saúde, Indicadores Básicos de Saúde, Humanos, Hiperlipidemias/prevenção & controle, Hipertensão/prevenção & controle, Masculino, Síndrome Metabólica/complicações, Pessoa de Meia-Idade, Obesidade/prevenção & controle, Avaliação de Resultados em Cuidados de Saúde, Estudos Prospectivos, Fatores de RiscoRESUMO
Proton pump inhibitors (PPIs) reduce the rate of rebleeding in patients with nonvariceal upper GI bleed (NVGIB). Oral (PO) and intravenous (IV) pantoprazole are equipotent in raising gastric pH. We conducted a pilot study comparing the efficacy of PO vs. IV pantoprazole for reducing rebleeding after NVGIB. Patients with NVGIB were randomized to receive PO (80 mg BID for 3 days) or IV (80-mg IV bolus and 8 mg/hr infusion for 3 days) pantoprazole followed by pantoprazole, 40 mg PO BID, for 30 days. All patients underwent endoscopy within 24 hr and endotherapy was applied where necessary. Twelve patients randomized to the PO and 13 to the IV pantoprazole group were comparable in age, hematocrit, Rockall scores, ulcer characteristics, and endoscopic interventions. Two patients in the IV arm rebled and another in the IV arm developed reversible renal failure. No patient in the PO arm rebled, had organ failure, or had to be changed to IV pantoprazole. We conclude that in this pilot study, the effect of PO pantoprazole on 30-day rebleeding rate in patients with NVGIB was similar to that of IV pantoprazole.
Assuntos
2-Piridinilmetilsulfinilbenzimidazóis/administração & dosagem, Antiulcerosos/administração & dosagem, Hemorragia Gastrointestinal/tratamento farmacológico, Inibidores da Bomba de Prótons, Administração Oral, Idoso, Endoscopia Gastrointestinal, Feminino, Seguimentos, Hemorragia Gastrointestinal/epidemiologia, Hemorragia Gastrointestinal/patologia, Humanos, Incidência, Injeções Intravenosas, Masculino, Pessoa de Meia-Idade, Pantoprazol, Projetos Piloto, Estudos Prospectivos, Prevenção Secundária, Resultado do Tratamento, Wisconsin/epidemiologiaRESUMO
OBJECTIVE: Therapeutic hypothermia during cardiac arrest and after restoration of spontaneous circulation enables intact survival after prolonged cardiopulmonary cerebral resuscitation (CPCR). The effect of cooling during CPCR is not known. We hypothesized that mild to moderate hypothermia during CPCR would increase the rate of neurologically intact survival after prolonged cardiac arrest in dogs. DESIGN: Randomized, controlled study using a clinically relevant cardiac arrest outcome model in dogs. SETTING: University research laboratory. SUBJECTS: Twenty-seven custom-bred hunting dogs (19-29 kg; three were excluded from outcome evaluation). INTERVENTIONS: Dogs were subjected to cardiac arrest no-flow of 3 mins, followed by 7 mins of basic life support and 10 mins of simulated unsuccessful advanced life support attempts. Another 20 mins of advanced life support continued with four treatments: In control group 1 (n = 7), CPCR was with normothermia; in group 2 (n = 6, 1 of 7 excluded), with moderate hypothermia via venovenous extracorporeal shunt cooling to tympanic temperature 27 degrees C; in group 3 (n = 6, 2 of 8 excluded), the same as group 2 but with mild hypothermia, that is, tympanic temperature 34 degrees C; and in group 4 (n = 5), with normothermic venovenous shunt. After 40 mins of ventricular fibrillation, reperfusion was with cardiopulmonary bypass for 4 hrs, including defibrillation to achieve spontaneous circulation. All dogs were maintained at mild hypothermia (tympanic temperature 34 degrees C) to 12 hrs. Intensive care was to 96 hrs. MEASUREMENTS AND MAIN RESULTS: Overall performance categories and neurologic deficit scores were assessed from 24 to 96 hrs. Regional and total brain histologic damage scores and extracerebral organ damage were assessed at 96 hrs. In normothermic groups 1 and 4, all 12 dogs achieved spontaneous circulation but remained comatose and (except one) died within 58 hrs with multiple organ failure. In hypothermia groups 2 and 3, all 12 dogs survived to 96 hrs without gross extracerebral organ damage (p < .0001). In group 2, all but one dog achieved overall performance category 1 (normal); four of six dogs had no neurologic deficit and normal brain histology. In group 3, all dogs achieved good functional outcome with normal or near-normal brain histology. Myocardial damage scores were worse in the normothermic groups compared with both hypothermic groups (p < .01). CONCLUSION: Mild or moderate hypothermia during prolonged CPCR in dogs preserves viability of extracerebral organs and improves outcome.
