Determining Research Priorities With Teen and Adult Congenital Heart Disease Patients: A Mixed-Methods Study
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ABSTRACT:
SUBMITTER: Keir M
PROVIDER: S-EPMC10642133 | biostudies-literature | 2022 Dec
REPOSITORIES: biostudies-literature
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Project description:Africa has one of the highest prevalence of heart diseases in children and young adults, including congenital heart disease (CHD) and rheumatic heart disease (RHD). We present here an extensive review of recent data from the African continent highlighting key studies and information regarding progress in CHD and RHD since 2005. Main findings include evidence that the CHD burden is underestimated mainly due to the poor outcome of African children with CHD. The interest in primary prevention for RHD has been recently re-emphasised, and new data are available regarding echocardiographic screening for subclinical RHD and initiation of secondary prevention. There is an urgent need for comprehensive service frameworks to improve access and level of care and services for patients, educational programmes to reinforce the importance of prevention and early diagnosis and a relevant research agenda focusing on the African context.
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Project description:BackgroundClinical research in perioperative medicine requires the perspectives of patients and caregivers to increase its relevance and quality, benefiting both researchers and the community. Identifying these priorities will enable researchers, funders, and governing bodies to efficiently use scarce funding and resources. We aim to identify the top 10 research priorities in perioperative medical research in Australia.MethodsA mixed-methods, exploratory-sequential design will be conducted. The study will include five phases. Initially, a published open-ended survey gathered responses from the population (researchers, healthcare workers, and consumers) regarding uncertainties/questions relevant to the population about perioperative medical research. We collected 544 questions and quantitatively analysed and grouped them according to the Standardised Endpoints in Perioperative Medicine-Core Outcomes Measures in Perioperative and Anaesthetic Care (StEP-COMPAC) endpoints. Using multicriteria decision-making software, workshops combining the population will be conducted to determine the top 10 priorities for perioperative medicine research for the Australian population.Ethics and disseminationEthical approval to conduct the study was obtained from the Alfred Health (Australia) Human Research Ethics Committee (ID: 171/19). The findings will be disseminated in peer review publications, conferences, and dissemination across perioperative research networks. The top 10 priorities will be available to inform research funders, grant submissions, guidelines, and the population.
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Project description:BACKGROUND: The Mental Health Country Profile is a tool that was generated by the International Mental Health Policy and Services Project to inform policy makers, professionals and other key stakeholders about important issues which need to be considered in mental health policy development. The Mental Health Country Profile contains four domains, which include the mental health context, resources, provision and outcomes. We have aimed to generate a Mental Health Country Profile for Vietnam, in order to highlight the strengths and weaknesses of the Vietnamese mental health situation, in order to inform future reform efforts and decision-making. METHODS: This study used snowball sampling to identify informants for generating a Mental Health Country Profile for Vietnam, and the data gathering was done through semi-structured interviews and collection of relevant reports and documents. The material from the interviews and documents was analysed according to qualitative content analysis. RESULTS: Marked strengths of the Vietnam mental health system are the aims to move toward community management and detection of mental illness, and the active involvement of several multilateral organizations and NGOs. However, there are a number of shortages still found, including the lack of treatment interventions apart from medications, the high proportion of treatments to be paid out-of-pocket, prominence of large tertiary psychiatric hospitals, and a lack of preventative measures or mental health information to the public. CONCLUSIONS: At the end of this decade, mental health care in Vietnam is still characterised by unclear policy and poor critical mass especially within the governmental sector. This initial attempt to map the mental health situation of Vietnam suffers from a number of limitations and should be seen as a first step towards a comprehensive profile.
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Project description:We aimed to explore perspectives of teenagers on their exposure to gun violence (GV), their knowledge and attitudes towards firearm injury prevention (FIP) efforts, and how to counsel them about FIP. Teens from two single-sex Bronx Catholic high schools participated in videoconferencing focus groups. Participants completed an online survey collecting demographic information and Likert-scale scoring of attitudes towards GV. Quantitative data was analyzed with descriptive statistics. Focus group discussions were recorded and transcribed. Using Dedoose, two investigators independently coded data and achieved consensus using content analysis. Six focus groups (3 from each school, n = 28 participants) were held from October-November 2020. A total of 27 participants completed the survey. Eighty-one percent of respondents agreed "Doctors should talk to teens about gun safety." During focus groups, participants reported personal, community, and entertainment media exposure to GV. GV elicited many emotions, including fear and frustration. Teens identified factors contributing to GV that should be addressed, including poverty, racism, and mental illness. Most had not received prior FIP education and desired more information from trusted adults. They preferred discussions over written materials and information given over time. Teens were open to doctors counseling on FIP during healthcare visits and suggested including screening questions on surveys, conversations during healthcare maintenance visits, and classroom talks by physicians. Bronx teens are exposed to and distressed by community GV. They desired more FIP education, including physician counseling during healthcare visits. Next steps are to create and test FIP guidance for adolescents.
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Project description:BackgroundThe clinical impact of valvular heart disease (VHD) in adult congenital heart disease (ACHD) patients is unascertained. Aim of our study was to assess the prevalence and clinical impact of severe VHD (S-VHD) in a real-world contemporary cohort of ACHD patients.Materials and methodsConsecutive patients followed-up at our ACHD Outpatient Clinic from September 2014 to February 2021 were enrolled. Clinical characteristics and echocardiographic data were prospectively entered into a digitalized medical records database. VHD at the first evaluation was assessed and graded according to VHD guidelines. Clinical data at follow-up were collected. The study endpoint was the occurrence of cardiac mortality and/or unplanned cardiac hospitalization during follow-up.ResultsA total of 390 patients (median age 34 years, 49% males) were included and S-VHD was present in 101 (25.9%) patients. Over a median follow-up time of 26 months (IQR: 12-48), the study composite endpoint occurred in 76 patients (19.5%). The cumulative endpoint-free survival was significantly lower in patients with S-VHD vs. patients with non-severe VHD (Log rank p < 0.001). At multivariable analysis, age and atrial fibrillation at first visit (p = 0.029 and p = 0.006 respectively), lower %Sat O2, higher NYHA class (p = 0.005 for both), lower LVEF (p = 0.008), and S-VHD (p = 0.015) were independently associated to the study endpoint. The likelihood ratio test demonstrated that S-VHD added significant prognostic value (p = 0.017) to a multivariate model including age, severe CHD, atrial fibrillation, %Sat O2, NYHA, LVEF, and right ventricle systolic pressure > 45 mmHg.ConclusionIn ACHD patients, the presence of S-VHD is independently associated with the occurrence of cardiovascular mortality and hospitalization. The prognostic value of S-VHD is incremental above other established prognostic markers.
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Project description:BackgroundRecent studies suggest that the funding breakdown of autism research in the United States may not align with stakeholder priorities. Furthermore, the majority of stakeholder-engaged research involves parents of autistic individuals rather than autistic adults themselves, who may have differing perspectives on research and funding priorities. Women and non-binary adults have been historically underrepresented in autism research.ObjectivesThe goal of the current study was to examine the autism research priorities of a group of autistic adults, with a particular focus on how these priorities are influenced by one's gender identity.DesignA concurrent mixed-methods design was used for this study.MethodsSeventy-one autistic adults (n = 18 men, n = 29 women, n = 24 non-binary adults) completed an online survey regarding the current funding landscape for autism research. Participants ranked the main research topics of the Interagency Autism Coordinating Committee (IACC) and identified top-priority research areas through free-text responses. Response themes were analyzed using content analysis and compared with the existing topic rankings.ResultsOverall rankings of IACC research areas had a near inverse relationship with the amount of funding per research area. Main themes of stakeholder-generated research topics included "Characterization," "Societal Change," "Well-Being & Trauma," "Diagnosis & Healthcare," and "Accessibility & Services." There was a relatively high overlap between topics identified by the IACC and by the stakeholder-generated topics. Subtle but important differences in topics arose based on gender, with women and non-binary adults identifying topics that were not identified by autistic men.ConclusionUnique priorities generated by those typically excluded from autism research development underscore the importance of co-creating research with underrepresented stakeholders impacted by this work. The current study echoes the growing movement in the field of autism research to center autistic perspectives at every stage of research, including the establishment of funding priorities.
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Project description:Background The epidemiology of pulmonary hypertension (PH) in patients with adult congenital heart disease in Western countries is already known. We investigate clinical characteristics of PH in adult congenital heart disease with emphasis on complex congenital heart disease (CHD) from an Asian cohort in Taiwan. Methods and Results All adult patients (aged >18 years) diagnosed with CHD between January 2007 and July 2018 qualified for the study. PH was determined by cardiac catheterization data or echocardiography reports. In accord with the World Symposia on Pulmonary Hypertension, CHD was further categorized as simple, severe, or complex CHD (including pulmonary atresia-ventricular septal defect and single-ventricle anomalies). There were 4301 patients (55.6% women), 15.7% with severe and 3.9% with complex CHD. The cumulative incidence of PH was 4.4% (95% CI, 3.8-5.0). Our multivariable regression model indicated 4.2-fold mortality increase (95% CI, 3.0-5.9) in the presence of PH, with age, female sex, and severe or complex CHD linked to higher incidence of PH. Only 49% of patients received PH-specific therapy. Five- and 10-year survival rates of patients with PH (n=190) were 72.3% (95% CI, 65.1%-78.4%) and 58.8% (95% CI, 50.1%-66.5%), respectively. Survival rates in those with Eisenmenger syndrome, PH after defect correction, and complex CHD were similar. Low oxygen saturation and high uric acid levels were associated with increased mortality. Conclusions In this sizable Asian adult CHD cohort, the cumulative incidence of PH was aligned with that of Western countries. Mortality proved higher in patients with PH versus without PH. Although complex CHD carried greater risk of PH compared with other adult CHD subsets, survival rate was similar.
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