Current detection rates and time-to-detection of all identifiable BRCA carriers in the Greater London population.

BACKGROUND: BRCA carrier identification offers opportunities for early diagnoses, targeted treatment and cancer prevention. We evaluate BRCA- carrier detection rates in general and Ashkenazi Jewish (AJ) populations across Greater London and estimate time-to-detection of all identifiable BRCA carriers. METHODS: BRCA carrier data from 1993 to 2014 were obtained from National Health Service genetic laboratories and compared with modelled predictions of BRCA prevalence from published literature and geographical data from UK Office for National Statistics. Proportion of BRCA carriers identified was estimated. Prediction models were developed to fit BRCA detection rate data. BRCA carrier identification rates were evaluated for an 'Angelina Jolie effect'. Maps for four Greater London regions were constructed, and their relative BRCA detection rates were compared. Models developed were used to predict future time-to-identify all detectable BRCA carriers in AJ and general populations. RESULTS: Until 2014, only 2.6% (3072/111 742 estimated) general population and 10.9% (548/4985 estimated) AJ population BRCA carriers have been identified in 16 696 608 (AJ=190 997) Greater London population. 57% general population and 54% AJ mutations were identified through cascade testing. Current detection rates mirror linear fit rather than parabolic model and will not identify all BRCA carriers. Addition of unselected ovarian/triple-negative breast cancer testing would take >250 years to identify all BRCA carriers. Doubling current detection rates can identify all 'detectable' BRCA carriers in the general population by year 2181, while parabolic and triple linear rates can identify 'detectable' BRCA carriers by 2084 and 2093, respectively. The linear fit model can identify 'detectable' AJ carriers by 2044. We did not find an Angelina Jolie effect on BRCA carrier detection rates. There was a significant difference in BRCA detection rates between geographical regions over time (P<0.001). CONCLUSIONS: The majority of BRCA carriers have not been identified, missing key opportunities for prevention/earlier diagnosis. Enhanced and new strategies/approaches are needed

Paradata analyses to inform population-based survey capture of pregnancy outcomes: EN-INDEPTH study.

BACKGROUND: Paradata are (timestamped) records tracking the process of (electronic) data collection. We analysed paradata from a large household survey of questions capturing pregnancy outcomes to assess performance (timing and correction processes). We examined how paradata can be used to inform and improve questionnaire design and survey implementation in nationally representative household surveys, the major source for maternal and newborn health data worldwide. METHODS: The EN-INDEPTH cross-sectional population-based survey of women of reproductive age in five Health and Demographic Surveillance System sites (in Bangladesh, Guinea-Bissau, Ethiopia, Ghana, and Uganda) randomly compared two modules to capture pregnancy outcomes: full pregnancy history (FPH) and the standard DHS-7 full birth history (FBH+). We used paradata related to answers recorded on tablets using the Survey Solutions platform. We evaluated the difference in paradata entries between the two reproductive modules and assessed which question characteristics (type, nature, structure) affect answer correction rates, using regression analyses. We also proposed and tested a new classification of answer correction types. RESULTS: We analysed 3.6 million timestamped entries from 65,768 interviews. 83.7% of all interviews had at least one corrected answer to a question. Of 3.3 million analysed questions, 7.5% had at least one correction. Among corrected questions, the median number of corrections was one, regardless of question characteristics. We classified answer corrections into eight types (no correction, impulsive, flat (simple), zigzag, flat zigzag, missing after correction, missing after flat (zigzag) correction, missing/incomplete). 84.6% of all corrections were judged not to be problematic with a flat (simple) mistake correction. Question characteristics were important predictors of probability to make answer corrections, even after adjusting for respondent's characteristics and location, with interviewer clustering accounted as a fixed effect. Answer correction patterns and types were similar between FPH and FBH+, as well as the overall response duration. Avoiding corrections has the potential to reduce interview duration and reproductive module completion by 0.4 min. CONCLUSIONS: The use of questionnaire paradata has the potential to improve measurement and the resultant quality of electronic data. Identifying sections or specific questions with multiple corrections sheds light on typically hidden challenges in the survey's content, process, and administration, allowing for earlier real-time intervention (e.g.,, questionnaire content revision or additional staff training). Given the size and complexity of paradata, additional time, data management, and programming skills are required to realise its potential

Iran health insurance system in transition: equity concerns and steps to achieve universal health coverage.

BACKGROUND: Equity, efficiency, sustainability, acceptability to clients and providers, and quality are the cornerstones of universal health coverage (UHC). No country has a single way to achieve efficient UHC. In this study, we documented the Iranian health insurance reforms, focusing on how and why certain policies were introduced and implemented, and which challenges remain to keep a sustainable UHC. METHODS: This retrospective policy analysis used three sources of data: a comprehensive and chronological scoping review of literature, interviews with Iran health insurance policy actors and stakeholders, and a review of published and unpublished official documents and local media. All data were analysed using thematic content analysis. RESULTS: Health insurance reforms, especially health transformation plan (HTP) in 2014, helped to progress towards UHC and health equity by expanding population coverage, a benefits package, and enhancing financial protection. However, several challenges can jeopardize sustaining this progress. There is a lack of suitable mechanisms to collect contributions from those without a regular income. The compulsory health insurance coverage law is not implemented in full. A substantial gap between private and public medical tariffs leads to high out-of-pocket health expenditure. Moreover, controlling the total health care expenditures is not the main priority to make keeping UHC more sustainable. CONCLUSION: To achieve UHC in Iran, the Ministry of Health and Medical Education and health insurance schemes should devise and follow the policies to control health care expenditures. Working mechanisms should be implemented to extend free health insurance coverage for those in need. More studies are needed to evaluate the impact of health insurance reforms in terms of health equity, sustainability, coverage, and access

Public-private partnerships in primary health care: a scoping review

Background: The Astana Declaration on Primary Health Care reiterated that PHC is a cornerstone of a sustainable health system for universal health coverage (UHC) and health-related Sustainable Development Goals. It called for governments to give high priority to PHC in partnership with their public and private sector organisations and other stakeholders. Each country has a unique path towards UHC, and different models for public-private partnerships (PPPs) are possible. The goal of this paper is to examine evidence on the use of PPPs in the provision of PHC services, reported challenges and recommendations.   Methods: We systematically reviewed peer-reviewed studies in six databases (ScienceDirect, Ovid Medline, PubMed, Web of Science, Embase, and Scopus) and supplemented it by the search of grey literature. PRISMA reporting guidelines were followed.   Results: Sixty-one studies were included in the final review. Results showed that most PPPs projects were conducted to increase access and to facilitate the provision of prevention and treatment services (i.e., tuberculosis, education and health promotion, malaria, and HIV/AIDS services) for certain target groups. Most projects reported challenges of providing PHC via PPPs in the starting and implementation phases. The reported challenges and recommendations on how to overcome them related to education, management, human resources, financial resources, information, and technology systems aspects.   Conclusion: Despite various challenges, PPPs in PHC can facilitate access to health care services, especially in remote areas. Governments should consider long-term plans and sustainable policies to start PPPs in PHC and should not ignore local needs and context

Impact of pain, fatigue and bowel incontinence on the quality of life of people living with inflammatory bowel disease: A UK cross-sectional survey.

BACKGROUND AND AIMS: People with inflammatory bowel disease (IBD) often experience pain, fatigue and bowel incontinence and are at an increased risk of anxiety and depression. Our aim was to assess the impact of these symptoms on health-related quality of life (QoL) in IBD. METHODS: In the IBD-BOOST survey, over 26,000 people with IBD across the UK were approached; 8486 participant-completed surveys were returned. Participants' QoL was measured using the EQ-5D-5L questionnaire and their QoL was calculated on a scale ranging from 1 (perfect health) to -0.594 (worst health). Item non-response was imputed. Stages of linear regression models assessed the associations of symptoms with QoL controlling for IBD type, socio-demographic characteristics, co-morbidities and, in further analysis, for IBD activity and IBD control. RESULTS: The EQ-5D-5L questionnaire was fully completed by 8093 (95.4%) participants (mean age of 50 years [SD 15]; 49% with Crohn's disease). The mean QoL was 0.76 (SD 0.23). From the three IBD-related symptoms, pain was associated with the largest QoL decrement (-0.159), followed by fatigue (-0.140) and bowel incontinence (-0.048). Co-occurrence of pain and fatigue further reduced QoL. Clear graded associations were observed between symptom severity and QoL decrements (all trend p < 0.001). Depression and anxiety were also associated with significant QoL decrements (-0.102 and -0.110 for moderate-to-severe anxiety and moderately severe depression, respectively). Worse IBD control and higher IBD activity were associated with lower QoL. CONCLUSIONS: We report strong associations between symptoms of pain, fatigue, bowel incontinence, anxiety, depression, and their severity and reduced QoL in IBD. These estimates could inform future IBD management interventions

Pregnancy intention data completeness, quality and utility in population-based surveys: EN-INDEPTH study

An estimated 40% of pregnancies globally are unintended. Measurement of pregnancy intention in low- and middle-income countries relies heavily on surveys, notably Demographic and Health Surveys (DHS), yet few studies have evaluated survey questions. We examined questions for measuring pregnancy intention, which are already in the DHS, and additional questions and investigated associations with maternity care utilisation and adverse pregnancy outcomes. Methods The EN-INDEPTH study surveyed 69,176 women of reproductive age in five Health and Demographic Surveillance System sites in Ghana, Guinea-Bissau, Ethiopia, Uganda and Bangladesh (2017–2018). We investigated responses to survey questions regarding pregnancy intention in two ways: (i) pregnancy-specific intention and (ii) desired-versus-actual family size. We assessed data completeness for each and level of agreement between the two questions, and with future fertility desire. We analysed associations between pregnancy intention and number and timing of antenatal care visits, place of delivery, and stillbirth, neonatal death and low birthweight. Results Missing data were <2% in all questions. Responses to pregnancy-specific questions were more consistent with future fertility desire than desired-versus-actual family size responses. Using the pregnancy-specific questions, 7.4% of women who reported their last pregnancy as unwanted reported wanting more children in the future, compared with 45.1% of women in the corresponding desired family size category. Women reporting unintended pregnancies were less likely to attend 4+ antenatal care visits (aOR 0.73, 95% CI 0.64–0.83), have their first visit during the first trimester (aOR 0.71, 95% CI 0.63–0.79), and report stillbirths (aOR 0.57, 95% CI 0.44–0.73) or neonatal deaths (aOR 0.79, 95% CI 0.64–0.96), compared with women reporting intended pregnancies. We found no associations for desired-versus-actual family size intention. Conclusions We found the pregnancy-specific intention questions to be a much more reliable assessment of pregnancy intention than the desired-versus-actual family size questions, despite a reluctance to report pregnancies as unwanted rather than mistimed. The additional questions were useful and may complement current DHS questions, although these are not the only possibilities. As women with unintended pregnancies were more likely to miss timely and frequent antenatal care, implementation research is required to improve coverage and quality of care for those women

Electronic data collection in a multi-site population-based survey: EN-INDEPTH study

Background: Electronic data collection is increasingly used for household surveys, but factors influencing design and implementation have not been widely studied. The Every Newborn-INDEPTH (EN-INDEPTH) study was a multi-site survey using electronic data collection in five INDEPTH health and demographic surveillance system sites. Methods: We described experiences and learning involved in the design and implementation of the EN-INDEPTH survey, and undertook six focus group discussions with field and research team to explore their experiences. Thematic analyses were conducted in NVivo12 using an iterative process guided by a priori themes. Results: Five steps of the process of selecting, adapting and implementing electronic data collection in the EN-INDEPTH study are described. Firstly, we reviewed possible electronic data collection platforms, and selected the World Bank’s Survey Solutions® as the most suited for the EN-INDEPTH study. Secondly, the survey questionnaire was coded and translated into local languages, and further context-specific adaptations were made. Thirdly, data collectors were selected and trained using standardised manual. Training varied between 4.5 and 10 days. Fourthly, instruments were piloted in the field and the questionnaires finalised. During data collection, data collectors appreciated the built-in skip patterns and error messages. Internet connection unreliability was a challenge, especially for data synchronisation. For the fifth and final step, data management and analyses, it was considered that data quality was higher and less time was spent on data cleaning. The possibility to use paradata to analyse survey timing and corrections was valued. Synchronisation and data transfer should be given special consideration. Conclusion: We synthesised experiences using electronic data collection in a multi-site household survey, including perceived advantages and challenges. Our recommendations for others considering electronic data collection include ensuring adaptations of tools to local context, piloting/refining the questionnaire in one site first, buying power banks to mitigate against power interruption and paying attention to issues such as GPS tracking and synchronisation, particularly in settings with poor internet connectivity

Termination of pregnancy data completeness and feasibility in population-based surveys: EN-INDEPTH study

Background Termination of pregnancy (TOP) is a common cause of maternal morbidity and mortality in low- and middle-income countries. Population-based surveys are the major data source for TOP data in LMICs but are known to have shortcomings that require improving. The EN-INDEPTH multi-country survey employed a full pregnancy history approach with roster and new questions on TOP and Menstrual Restoration. This mixed methods paper assesses the completeness of responses to questions eliciting TOP information from respondents and reports on practices, barriers, and facilitators to TOP reporting. Methods The EN-INDEPTH study was a population-based cross-sectional study. The Full Pregnancy History arm of the study surveyed 34,371 women of reproductive age between 2017 and 2018 in five Health and Demographic Surveillance System (HDSS) sites of the INDEPTH network: Bandim, Guinea-Bissau; Dabat, Ethiopia; IgangaMayuge, Uganda; Kintampo, Ghana; and Matlab, Bangladesh. Completeness and time spent in answering TOP questions were evaluated using simple tabulations and summary statistics. Exact binomial 95% confidence intervals were computed for TOP rates and ratios. Twenty-eight (28) focus group discussions were undertaken and analysed thematically. Results Completeness of responses regarding TOP was between 90.3 and 100.0% for all question types. The new questions elicited between 2.0% (1.0–3.4), 15.5% (13.9–17.3), and 11.5% (8.8–14.7) lifetime TOP cases over the roster questions from Dabat, Ethiopia; Matlab, Bangladesh; and Kintampo, Ghana, respectively. The median response time on the roster TOP questions was below 1.3 minutes in all sites. Qualitative results revealed that TOP was frequently stigmatised and perceived as immoral, inhumane, and shameful. Hence, it was kept secret rendering it difficult and uncomfortable to report. Miscarriages were perceived to be natural, being easier to report than TOP. Interviewer techniques, which were perceived to facilitate TOP disclosure, included cultural competence, knowledge of contextually appropriate terms for TOP, adaptation to interviewee’s individual circumstances, being non-judgmental, speaking a common language, and providing detailed informed consent. Conclusions Survey roster questions may under-represent true TOP rates, since the new questions elicited responses from women who had not disclosed TOP in the roster questions. Further research is recommended particularly into standardised training and approaches to improving interview context and techniques to facilitate TOP reporting in surveys