Equitable migrant-friendly perinatal healthcare access and quality in public maternity units in Portugal

Migrant women are at higher risk to face access barriers to perinatal care services and to experience worse pregnancy outcomes compared to native. Assessing the perception of migrant women and health providers discloses a multifaceted view on migrant-friendly care, a multidimensional concept in itself. This study aims to compare self-perceived assessments of migrant women and directors of obstetrics and gynaecology (GYN/OBS) departments on equitable migrant-friendly perinatal healthcare quality and access during the intrapartum and postpartum period at public maternities in Portugal. Methods: In this cross-sectional study, two indicators on Healthcare access and Quality of care were developed to compare how adult migrant women who gave birth between April 2017 and March 2019 and GYN/OBS department directors assessed offered care. The one-sample Wilcoxon test was used to compare directors' with migrants' assessments and the Kruskal-Wallis one-way analysis of variance to test for country regional differences. A stratified analysis by sex, spoken language, and country of birth tested for potential effect modifiers. Results: Migrants rated Healthcare access significantly better (P<0.05), but perceived Quality of care worse (P<0.01) than GYN/OBS department directors. Migrants' and directors' perceptions differed significantly according to directors' gender (P<0.05). Migrants' and directors' assessments on Healthcare access (P<0.05) and Quality (P<0.01) changed significantly across regions. Conclusions: Migrants' and directors' self-perceived appraisal of Healthcare access and Quality of care significantly varied. Identifying these discordances allows to deliver insights into existing barriers in access and provision of care and raises awareness to improve quality assurance, essential to inform practice and policies.info:eu-repo/semantics/publishedVersio

Improving Understanding of Participation and Attrition Phenomena in European Cohort Studies : Protocol for a Multi-Situated Qualitative Study

Background: Cohort studies represent a strong methodology for increasing one's understanding of human life-course development and etiological mechanisms. Retention of participants, especially during long follow-up periods, is, however, a major challenge. A better understanding of the motives for participation and attrition in cohort studies in diverse sociogeographic and cultural settings is needed, as this information is most useful in developing effective retention strategies. Objective: This study aims to improve our understanding of participation and attrition phenomena in a European cohort study of very preterm/very-low-birth-weight (VPT/VLBW) infants from various sociogeographic and cultural settings to better understand variability and ultimately contribute to developing novel and more "in-context" strategies to improve retention. Methods: This study uses a triangulation of multisituated methods to collect data on various cohorts in the Research on European Children and Adults Born Preterm (RECAP) network, which include focus group discussions, individual semidriven interviews, and a collaborative, reflexive visual methodology (participant-generated VideoStories) with relevant key actors involved with these cohort studies such as adult participants, parents (caregivers), cohort staff, health care professionals, and academic researchers. The methodological strategy aims to provide a shared flexible framework of various qualitatively driven methods to collect data on VPT/VLBW adult and child cohorts, from which research partners may choose and combine those most pertinent to apply in their own specific contexts. Data from all sources and sites will be submitted to a triangulation of phenomenological thematic analysis with discourse analysis. Results: As of January 2020, in this study, we enrolled 92 participants variously involved with child and adult RECAP partnering cohorts from six countries. Multisite enrollment and data collection are expected to be completed in all seven study settings by June 2020. Findings will be reported in future publications. Conclusions: Qualitative research methods are a useful complement for enriching and illuminating quantitative results. We expect that opting for a multisituated study approach addressing the interplay of the lived experience of individuals in both researcher and researched stances of particular cohort study settings will contribute to filling some gaps in the understanding of participation variability and effectiveness of different implemented strategies in context. Moreover, health research subjects have traditionally been positioned as passive objects of study rather than active participants, even though they have the greatest stake in improving health care policies and practices. Including collaborative methods allows us to counteract the "top-down" model by handing over some research control to the very people who are providing the data on which research findings will be based while also acknowledging the value of their involvement.Peer reviewe

Record linkage of population-based cohort data from minors with national register data : A scoping review and comparative legal analysis of four European countries

Funding Information: We would like to acknowledge Evert-Ben van Veen from the MLC Foundation, Dagelijkse Groenmarkt 2, 2513 AL Den Haag, the Netherlands. The results on the country-specific text on the Netherlands was based on his contribution. Publisher Copyright: © 2021 Doetsch JN et al.Background: The GDPR was implemented to build an overarching framework for personal data protection across the EU/EEA. Linkage of data directly collected from cohort participants, potentially serving as a prominent tool for health research, must respect data protection rules and privacy rights. Our objective was to investigate law possibilities of linking cohort data of minors with routinely collected education and health data comparing EU/EEA member states. Methods: A legal comparative analysis and scoping review was conducted of openly accessible published laws and regulations in EUR-Lex and national law databases on GDPR's implementation in Portugal, Finland, Norway, and the Netherlands and its connected national regulations purposing record linkage for health research that have been implemented up until April 30, 2021. Results: The GDPR does not ensure total uniformity in data protection legislation across member states offering flexibility for national legislation. Exceptions to process personal data, e.g., public interest and scientific research, must be laid down in EU/EEA or national law. Differences in national interpretation caused obstacles in cross-national research and record linkage: Portugal requires written consent and ethical approval; Finland allows linkage mostly without consent through the national Social and Health Data Permit Authority; Norway when based on regional ethics committee's approval and adequate information technology safeguarding confidentiality; the Netherlands mainly bases linkage on the opt-out system and Data Protection Impact Assessment. Conclusions: Though the GDPR is the most important legal framework, national legislation execution matters most when linking cohort data with routinely collected health and education data. As national interpretation varies, legal intervention balancing individual right to informational self-determination and public good is gravely needed for health research. More harmonization across EU/EEA could be helpful but should not be detrimental in those member states which already opened a leeway for registries and research for the public good without explicit consent.Peer reviewe

Insights into the genetic diversity of Mycobacterium tuberculosis in Tanzania.

BACKGROUND Human tuberculosis (TB) is caused by seven phylogenetic lineages of the Mycobacterium tuberculosis complex (MTBC), Lineage 1-7. Recent advances in rapid genotyping of MTBC based on single nucleotide polymorphisms (SNP), allow for phylogenetically robust strain classification, paving the way for defining genotype-phenotype relationships in clinical settings. Such studies have revealed that, in addition to host and environmental factors, strain variation in the MTBC influences the outcome of TB infection and disease. In Tanzania, such molecular epidemiological studies of TB however are scarce in spite of a high TB burden. METHODS AND FINDINGS Here we used SNP-typing to characterize a nationwide collection of 2,039 MTBC clinical isolates representative of 1.6% of all new and retreatment TB cases notified in Tanzania during 2012 and 2013. Four lineages, namely Lineage 1-4 were identified within the study population. The distribution and frequency of these lineages varied across regions but overall, Lineage 4 was the most frequent (n = 866, 42.5%), followed by Lineage 3 (n = 681, 33.4%) and 1 (n = 336, 16.5%), with Lineage 2 being the least frequent (n = 92, 4.5%). We found Lineage 2 to be independently associated with female sex (adjusted odds ratio [aOR] 2.14; 95% confidence interval [95% CI] 1.31 - 3.50, p = 0.002) and retreatment cases (aOR 1.67; 95% CI 0.95 - 2.84, p = 0. 065) in the study population. We found no associations between MTBC lineage and patient age or HIV status. Our sublineage typing based on spacer oligotyping on a subset of Lineage 1, 3 and 4 strains revealed the presence of mainly EAI, CAS and LAM families. Finally, we detected low levels of multidrug resistant isolates among a subset of 144 retreatment cases. CONCLUSIONS This study provides novel insights into the MTBC lineages and the possible influence of pathogen-related factors on the TB epidemic in Tanzania

Potential barriers in healthcare access of the elderly population influenced by the economic crisis and the troika agreement: a qualitative case study in Lisbon, Portugal

Abstract Background The recent economic and financial crisis in Portugal urged the Portuguese Government in April 2011 to request financial assistance from the troika austerity bail out program to get aid for its government debt. The troika agreement included health reforms and austerity measures of the National Health Service (NHS) in Portugal to save non-essential health care costs. This research aimed to identify potential barriers among the elderly population (aged 65 and above) to healthcare access influenced by the economic crisis and the troika agreement focussing on the Memorandum of Understanding on Specific Economic Policy Conditionality (MoU) in Lisbon metropolitan area, Portugal. Methods The qualitative study is including 13 semi-structured interviews of healthcare experts, municipality authority, health care providers, negotiator of the troika agreement, hospital managers, health economists and elderly. A content analysis was performed to evaluate the interviews applying Nvivo2011 software. The barriers identified were clustered towards the five areas of the ‘Conceptual framework on health care access’ by Levesque et al. (Int J Equity Health 12:18, 2013). Results Healthcare access for the elderly was found inadequate in four areas of the framework: availability; appropriateness; approachability; and affordability. The fifth area on acceptability was not identified since the study neither followed a gender nor ethnic specific purpose. The main identified barriers were: current financial situation and pension cuts; insufficient provision and increased user fees in primary care; inadequate design and availability of hospital care service; lack of long-term care facilities; increased out-of-pocket-payment on pharmaceuticals; limitations in exemption allowances; cuts in non-emergent health transportation; increased waiting time for elective surgery; and poor unadapted housing conditions for elderly. Conclusions The health reforms and health budget cuts in the MoU implemented as part of the troika agreement have been associated with increasing health inequalities in access to healthcare services for the elderly population. The majority of responses disclosed an increasing deficiency across the entire National Health Service (NHS) to collaborate, integrate and communicate between the different healthcare sectors for providing adequate care to the elderly. An urgent necessity of restructuring the health care system to adapt towards the elderly population was implied

Strengthening resilience of healthcare systems by focusing on perinatal and maternal healthcare access and quality

[No abstract available]The study received funding by the Foundation for Science and Technology—FCT (Portuguese Ministry of Science, Technology and Higher Education), under the Unidade de Investigação em Epidemiologia—Instituto de Saúde Pública da Universidade do Porto (EPIUnit) and the Laboratório Associado (ITR) UIDB/04750/2020 and LA/P/0064/2020. This study was also funded by the external PhD programme of Maastricht University (UM), Faculty of Health, Medicine and Life Sciences (FHML), Care and Public Health Research Institute (CAPHRI), Maastricht, The Netherlands. The salary of JD was paid during the initial phase of the study by the RECAP preterm project which has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 733280