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BMC Public Health Nov 2023Recent studies have shown a lifetime prevalence of 5.7% for health anxiety/hypochondriasis resulting in increased healthcare service utilisation and disability as...
BACKGROUND
Recent studies have shown a lifetime prevalence of 5.7% for health anxiety/hypochondriasis resulting in increased healthcare service utilisation and disability as consequences. To the best of our knowledge, there has been no systematic review examining the global costs of hypochondriasis, encompassing both direct and indirect costs. Our objective was to synthesize the available evidence on the economic burden of health anxiety and hypochondriasis to identify research gaps and provide guidance and insights for policymakers and future research.
METHODS
A systematic literature search was conducted using PubMed, Web of Science, PsycInfo, EconLit, IBSS and Google Scholar without any time limit, up until April 2022. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed in this search and the following article selection process. The included studies were systematically analysed and summarized using a predefined data extraction sheet.
RESULTS
Of the 3044 articles identified; 10 publications met our inclusion criteria. The results displayed significant variance in the overall costs listed among the studies. The reported economic burden of hypochondriasis ranged from 857.19 to 21137.55 US$ per capita per year. Most of the investigated costs were direct costs, whereas the assessment of indirect costs was strongly underrepresented.
CONCLUSION
This systematic review suggests that existing studies underestimate the costs of hypochondriasis due to missing information on indirect costs. Furthermore, there is no uniform data collection of the costs and definition of the disease, so that the few existing data are not comparable and difficult to evaluate. There is a need for standardised data collection and definition of hypochondriasis in future studies to identify major cost drivers as potential target point for interventions.
Topics: Humans; Hypochondriasis; Cost of Illness; Financial Stress; Anxiety; Anxiety Disorders
PubMed: 37957598
DOI: 10.1186/s12889-023-17159-5 -
International Dental Journal Aug 2023The Oral Health Observatory (OHO), launched in 2014 by FDI World Dental Federation, aims to provide a coordinated approach to international oral health data collection....
BACKGROUND
The Oral Health Observatory (OHO), launched in 2014 by FDI World Dental Federation, aims to provide a coordinated approach to international oral health data collection. A feasibility project involving 12 countries tested the implementation of the methodology and data collection tools and assessed data quality from 6 countries.
METHODS
National dental associations (NDAs) recruited dentists following a standardised sampling method. Dentists and patients completed paired questionnaires (N = 7907) about patients' demographics, dental attendance, oral health-related behaviours, oral impacts, and clinical measures using a mobile app. In addition, participating dentists (n = 93) completed an evaluation survey, and NDAs completed a survey and participated in workshops to assess implementation feasibility.
RESULTS
Feasibility data are presented from the 12 participating countries. In addition, the 6 countries most advanced with data collection as of July 2020 (China, Colombia, India, Italy, Japan, and Lebanon) were included in the assessment of data quality and qualitative evaluation of implementation feasibility. All NDAs in these 6 countries reported interest in collecting standardised, international data for policy and communication activities and to understand service use and needs. Eighty-two percent of dentists (n = 76) reported a patient response rate of between 80% and 100%. More than 70% (n = 71) of dentists were either satisfied or very satisfied with the patient recruitment and data collection methods. There were variations in patient oral health and behaviours across countries, such as self-reporting twice-daily brushing which ranged from 45% in India to 83% in Colombia.
CONCLUSIONS
OHO provides a feasible model for collecting international standardised data in dental practices. Reducing time implications, ensuring mobile app reliability, and allowing practitioners to access patient-reported outcomes to inform practice may enhance implementation.
Topics: Humans; Oral Health; Pilot Projects; Dentists; Reproducibility of Results; Surveys and Questionnaires
PubMed: 36925392
DOI: 10.1016/j.identj.2023.02.002 -
Medical Decision Making : An... Aug 2023Discrete choice experiments (DCE) are increasingly being conducted using online panels. However, the comparability of such DCE-based preferences to traditional modes of...
INTRODUCTION
Discrete choice experiments (DCE) are increasingly being conducted using online panels. However, the comparability of such DCE-based preferences to traditional modes of data collection (e.g., in-person) is not well established. In this study, supervised, face-to-face DCE was compared with its unsupervised, online facsimile on face validity, respondent behavior, and modeled preferences.
METHODS
Data from face-to-face and online EQ-5D-5L health state valuation studies were compared, in which each used the same experimental design and quota sampling procedure. Respondents completed 7 binary DCE tasks comparing 2 EQ-5D-5L health states presented side by side (health states A and B). Data face validity was assessed by comparing preference patterns as a function of the severity difference between 2 health states within a task. The prevalence of potentially suspicious choice patterns (i.e., all As, all Bs, and alternating As/Bs) was compared between studies. Preference data were modeled using multinomial logit regression and compared based on dimensional contribution to overall scale and importance ranking of dimension-levels.
RESULTS
One thousand five Online respondents and 1,099 face-to-face screened (F2F) respondents were included in the main comparison of DCE tasks. Online respondents reported more problems on all EQ-5D dimensions except for Mobility. The face validity of the data was similar between comparators. Online respondents had a greater prevalence of potentially suspicious DCE choice patterns ([Online]: 5.3% [F2F] 2.9%, = 0.005). When modeled, the relative contribution of each EQ-5D dimension differed between modes of administration. Online respondents weighed Mobility more importantly and Anxiety/Depression less importantly.
DISCUSSION
Although assessments of face validity were similar between Online and F2F, modeled preferences differed. Future analyses are needed to clarify whether differences are attributable to preference or data quality variation between modes of data collection.
Topics: Humans; Quality of Life; Health Status; Data Accuracy; Surveys and Questionnaires; Choice Behavior
PubMed: 37199407
DOI: 10.1177/0272989X231171912 -
BMC Medical Informatics and Decision... Oct 2023Online questionnaires are commonly used to collect information from participants in epidemiological studies. This requires building questionnaires using machine-readable...
BACKGROUND
Online questionnaires are commonly used to collect information from participants in epidemiological studies. This requires building questionnaires using machine-readable formats that can be delivered to study participants using web-based technologies such as progressive web applications. However, the paucity of open-source markup standards with support for complex logic make collaborative development of web-based questionnaire modules difficult. This often prevents interoperability and reusability of questionnaire modules across epidemiological studies.
RESULTS
We developed an open-source markup language for presentation of questionnaire content and logic, Quest, within a real-time renderer that enables the user to test logic (e.g., skip patterns) and view the structure of data collection. We provide the Quest markup language, an in-browser markup rendering tool, questionnaire development tool and an example web application that embeds the renderer, developed for The Connect for Cancer Prevention Study.
CONCLUSION
A markup language can specify both the content and logic of a questionnaire as plain text. Questionnaire markup, such as Quest, can become a standard format for storing questionnaires or sharing questionnaires across the web. Quest is a step towards generation of FAIR data in epidemiological studies by facilitating reusability of questionnaires and data interoperability using open-source tools.
Topics: Humans; Software; Surveys and Questionnaires; Epidemiologic Studies
PubMed: 37880712
DOI: 10.1186/s12911-023-02338-6 -
Scientific Data Aug 2023Besides far-reaching public health consequences, the COVID-19 pandemic had a significant psychological impact on people around the world. To gain further insight into...
Besides far-reaching public health consequences, the COVID-19 pandemic had a significant psychological impact on people around the world. To gain further insight into this matter, we introduce the Real World Worry Waves Dataset (RW3D). The dataset combines rich open-ended free-text responses with survey data on emotions, significant life events, and psychological stressors in a repeated-measures design in the UK over three years (2020: n = 2441, 2021: n = 1716 and 2022: n = 1152). This paper provides background information on the data collection procedure, the recorded variables, participants' demographics, and higher-order psychological and text-derived variables that emerged from the data. The RW3D is a unique primary data resource that could inspire new research questions on the psychological impact of the pandemic, especially those that connect modalities (here: text data, psychological survey variables and demographics) over time.
Topics: Humans; COVID-19; Data Collection; Emotions; Pandemics; Public Health
PubMed: 37567922
DOI: 10.1038/s41597-023-02438-y -
Canadian Journal of Anaesthesia =... Nov 2023Deceased donor audits (DAs) allow organ donation and transplantation systems to measure and analyze missed donation opportunities (MDOs). Missed donation opportunities...
PURPOSE
Deceased donor audits (DAs) allow organ donation and transplantation systems to measure and analyze missed donation opportunities (MDOs). Missed donation opportunities can harm both patients/families denied the opportunity to donate and patients on transplant waitlists denied access to lifesaving organs. In Canada, there are no national standards for DAs, data analysis, nor accountability processes surrounding MDOs. Understanding DA current practice in each jurisdicton would facilitate developing a national strategy for DAs.
METHOD
All provincial organ donation organizations (ODOs) were invited to participate in an environmental scan (ES) of current DA practices. The two ES phases were an electronic survey followed by semistructured interviews. We collected information about the objectives, frequency, scope, data collection methodology, resources required, definitions/metrics used, and process for reporting outcomes.
RESULTS
All eleven ODOs participated in both phases of the ES (July and October 2019). The primary purposes for conducting DAs were to estimate the following: 1) donor potential (5/11, 45%); 2) system performance at the provincial level (3/11, 27%); and 3) system performance at the hospital level (3/11, 27%). Frequency of DAs varied from weekly to annually, depending on the availability of death reports, urban vs rural setting, and staffing. High variability was observed in DA methodology, donor definitions, and metrics across jurisdictions.
CONCLUSION
There is significant variability across Canadian ODOs in the methodology, definitions, timeliness, data collection, and reporting of DAs. This underscores the need for a national donor audit strategy to reduce preventable harm from MDOs to patients/families at end of life and those on transplant waitlists.
Topics: Humans; Canada; Tissue Donors; Tissue and Organ Procurement; Organ Transplantation; Surveys and Questionnaires
PubMed: 37853277
DOI: 10.1007/s12630-023-02584-2 -
Health Research Policy and Systems Jul 2023Digital transformation in healthcare and the growth of health data generation and collection are important challenges for the secondary use of healthcare records in the...
BACKGROUND
Digital transformation in healthcare and the growth of health data generation and collection are important challenges for the secondary use of healthcare records in the health research field. Likewise, due to the ethical and legal constraints for using sensitive data, understanding how health data are managed by dedicated infrastructures called data hubs is essential to facilitating data sharing and reuse.
METHODS
To capture the different data governance behind health data hubs across Europe, a survey focused on analysing the feasibility of linking individual-level data between data collections and the generation of health data governance patterns was carried out. The target audience of this study was national, European, and global data hubs. In total, the designed survey was sent to a representative list of 99 health data hubs in January 2022.
RESULTS
In total, 41 survey responses received until June 2022 were analysed. Stratification methods were performed to cover the different levels of granularity identified in some data hubs' characteristics. Firstly, a general pattern of data governance for data hubs was defined. Afterward, specific profiles were defined, generating specific data governance patterns through the stratifications in terms of the kind of organization (centralized versus decentralized) and role (data controller or data processor) of the health data hub respondents.
CONCLUSIONS
The analysis of the responses from health data hub respondents across Europe provided a list of the most frequent aspects, which concluded with a set of specific best practices on data management and governance, taking into account the constraints of sensitive data. In summary, a data hub should work in a centralized way, providing a Data Processing Agreement and a formal procedure to identify data providers, as well as data quality control, data integrity and anonymization methods.
Topics: Humans; Data Accuracy; Data Collection; Data Management; Europe; Health Facilities
PubMed: 37430347
DOI: 10.1186/s12961-023-01026-1 -
BMJ Open Feb 2024The widespread use of electronic health records (EHRs) has led to a growing number of large routine primary care data collection projects globally, making these records... (Review)
Review
BACKGROUND
The widespread use of electronic health records (EHRs) has led to a growing number of large routine primary care data collection projects globally, making these records a valuable resource for health services and epidemiological and clinical research. This scoping review aims to comprehensively assess and compare strengths and limitations of all German primary care data collection projects and relevant research publications that extract data directly from practice management systems (PMS).
METHODS
A literature search was conducted in the electronic databases in May 2021 and in June 2022. The search string included terms related to general practice, routine data, and Germany. The retrieved studies were classified as applied studies and methodological studies, and categorised by type of research, subject area, sample of publications, disease category, or main medication analysed.
RESULTS
A total of 962 references were identified, with 241 studies included from six German projects in which databases are populated by EHRs from PMS. The projects exhibited significant heterogeneity in terms of size, data collection methods, and variables collected. The majority of the applied studies (n = 205, 85%) originated from one database with a primary focus on pharmacoepidemiological topics (n = 127, 52%) including prescription patterns (n = 68, 28%) and studies about treatment outcomes, compliance, and treatment effectiveness (n = 34, 14%). Epidemiological studies (n = 77, 32%) mainly focused on incidence and prevalence studies (n = 41, 17%) and risk and comorbidity analysis studies (n = 31, 12%). Only 10% (n = 23) of studies were in the field of health services research, such as hospitalisation.
CONCLUSION
The development and durability of primary care data collection projects in Germany is hindered by insufficient public funding, technical issues of data extraction, and strict data protection regulations. There is a need for further research and collaboration to improve the usability of EHRs for health services and research.
Topics: Humans; Electronic Health Records; Data Collection; Comorbidity; Cross-Sectional Studies; Primary Health Care
PubMed: 38382948
DOI: 10.1136/bmjopen-2023-074566 -
BMJ Open Aug 2023Economic analyses based on clinical trial data are costly and time consuming, and alternative methods for performing economic analyses should be explored. (Review)
Review
BACKGROUND
Economic analyses based on clinical trial data are costly and time consuming, and alternative methods for performing economic analyses should be explored.
OBJECTIVE AND METHODS
In this perspective, we examine the emerging role of administrative data for economic analyses in cancer.
RESULTS
Compared with routinely collected clinical trial data, routinely collected administrative data have several strengths including high capture rates for healthcare encounters, less resource utilisation, low rates of misclassification, long follow-up periods and the opportunity to collect data points not traditionally captured in clinical trials. However, there are also limitations including the need for accurate data linkage across multiple databases and systems, the costs and time associated with data linkage, the potential time lag between trial data collection and the availability of administrative data, and limited data on quality of life, toxicity and indirect costs. In this perspective, we identify important barriers and potential solutions to performing economic analyses for oncology using administrative data, and outline strategies to increase research in this field.
CONCLUSION
The use of routinely collected administrative data sets for economic analyses of clinical trials presents a unique opportunity that could complement and validate economic analyses based on trial-level data.
Topics: Humans; Quality of Life; Neoplasms; Data Collection; Cost-Benefit Analysis
PubMed: 37567744
DOI: 10.1136/bmjopen-2023-073353 -
BMC Health Services Research Jun 2023Availability and accessibility of anti-cancer medicines is the pillar of cancer management, and it is one of the main concerns in low-income countries including Rwanda....
BACKGROUND
Availability and accessibility of anti-cancer medicines is the pillar of cancer management, and it is one of the main concerns in low-income countries including Rwanda. The objective of this study was to assess the availability and affordability of anticancer medicines at cancer-treating hospitals in Rwanda.
METHODOLOGY
A descriptive cross-sectional study was conducted at 5 cancer-treating hospitals in Rwanda. Quantitative data were collected from stock cards and software that manage medicines and included the availability of anti-cancer medicines at the time of data collection, their stock status within the last two years, and the selling price.
RESULTS
The study found the availability of anti-cancer medicines at 41% in public hospitals at the time of data collection, and 45% within the last two years. We found the availability of anti-cancer medicines at 45% in private hospitals at the time of data collection, and 61% within the last two years. 80% of anti-cancer medicines in private hospitals were unaffordable while 20% were affordable. The public hospital that had most of the anti-cancer medicines in the public sector provided free services to the patients, and no cost was applied to the anti-cancer medicines.
CONCLUSION
The availability of anti-cancer medicines in cancer-treating hospitals is low in Rwanda, and most of them are unaffordable. There is a need to design strategies that can increase the availability and affordability of anti-cancer medicines, for the patients to get recommended cancer treatment options.
Topics: Humans; Cross-Sectional Studies; Rwanda; Cancer Care Facilities; Cardiology; Data Collection; Neoplasms
PubMed: 37391753
DOI: 10.1186/s12913-023-09706-y