Is gender equality associated with a longer healthier life? Ecological evidence from 27 European countries.

BACKGROUND: The association between gender equality and higher life expectancies has been described. Yet, little is known about its association with healthy life expectancy (HLE), or which domains are consistently associated with longer and healthier lives. We aimed to study the association between country-level gender equality, its domains and subdomains, with life expectancy and HLE in Europe, from 2013 to 2019. METHODS: We combined life and HLE estimates from Eurostat with the Gender Equality Index and its 'work', 'knowledge', 'money', 'time' and 'power' domains and respective subdomains, for 27 European countries. Associations were estimated using panel data regression analyses adjusted for Gross Domestic Product, healthcare expenditure and Gini coefficient. RESULTS: Higher life and healthy life expectancies were found in country years with higher gender equality, both for men and women. Associations were particularly consistent for the 'work' (ßHLE-men = 0.59; ßHLE-women = 0.59; P < 0.05) and 'power' domains (ßHLE-men = 0.09; ßHLE-women = 0.12, P < 0.01), especially for the 'work participation', 'political' and 'economic power' subdomains. CONCLUSION: These results point to a country-level association between gender equality and life and healthy life expectancies, suggesting that gender disparities in 'work participation' and 'political' and 'economic power' play a role in the health of women and men through their aging course.

The influence of the Great Recession on perinatal health-an ecological study on the trend changes and regional differences in Portugal.

Background: Few studies examine the relationship between socioeconomic factors and trends in mortality in high-income European countries. Due to the lack of regional-level data, most recent studies on social inequality in Portugal do not investigate regional differences. This study analyses time trends and regional disparities in the evolution of perinatal mortality (PMR) and infant mortality (IMR) associated with demographic and socioeconomic indicators following Portugal's 2008 economic and financial crisis. Methods: Associations were assessed using generalised linear models. A Poisson joinpoint regression model was applied to identify relevant PMR and IMR changes between 2000 and 2018. Country regional disparities were analysed using Mixed Effect Multilevel models. Findings: IMR and PMR significantly decreased in the pre-crisis period but not in the post-crisis period. The significant differences between regions in IMR and PMR in 2000 were followed by a different evolution of regional IMR after 2008. PMR and IMR were not significantly associated with socioeconomic indicators. A significant positive association with maternal age at first birth was identified. Interpretation: Results confirm the influence of the crisis on PMR and IMR trends in Portugal, taking into account recurring associations between macroeconomic cycles, variations in mortality trends, macroeconomic volatility, and stagnation of IMR and PMR. Regional inequalities confirm the internal variability of the crisis influence and persistent spatial inequalities affecting IMR patterns. Funding: FCT, under the Institute of Public Health of the University of Porto (ISPUP)-EPIUnit (UIDB/04750/2020) and ITR (LA/P/0064/2020), Maastricht University's external PhD programme under the Care and Public Health Research Institute (CAPHRI), and the RECAP preterm project (grant agreement no 733280).

Using Digital Tools to Study the Health of Adults Born Preterm at a Large Scale: e-Cohort Pilot Study.

BACKGROUND: Preterm birth is a global health concern. Its adverse consequences may persist throughout the life course, exerting a potentially heavy burden on families, health systems, and societies. In high-income countries, the first children who benefited from improved care are now adults entering middle age. However, there is a clear gap in the knowledge regarding the long-term outcomes of individuals born preterm. OBJECTIVE: This study aimed to assess the feasibility of recruiting and following up an e-cohort of adults born preterm worldwide and provide estimations of participation, characteristics of participants, the acceptability of questions, and the quality of data collected. METHODS: We implemented a prospective, open, observational, and international e-cohort pilot study (Health of Adult People Born Preterm-an e-Cohort Pilot Study [HAPP-e]). Inclusion criteria were being an adult (aged ≥18 years), born preterm (<37 weeks of gestation), having internet access and an email address, and understanding at least 1 of the available languages. A large, multifaceted, and multilingual communication strategy was established. Between December 2019 and June 2021, inclusion and repeated data collection were performed using a secured web platform. We provided descriptive statistics regarding participation in the e-cohort, namely, the number of persons who registered on the platform, signed the consent form, initiated and completed the baseline questionnaire, and initiated and completed the follow-up questionnaire. We also described the main characteristics of the HAPP-e participants and provided an assessment of the quality of the data and the acceptability of sensitive questions. RESULTS: As of December 31, 2020, a total of 1004 persons had registered on the platform, leading to 527 accounts with a confirmed email and 333 signed consent forms. A total of 333 participants initiated the baseline questionnaire. All participants were invited to follow-up, and 35.7% (119/333) consented to participate, of whom 97.5% (116/119) initiated the follow-up questionnaire. Completion rates were very high both at baseline (296/333, 88.9%) and at follow-up (112/116, 96.6%). This sample of adults born preterm in 34 countries covered a wide range of sociodemographic and health characteristics. The gestational age at birth ranged from 23+6 to 36+6 weeks (median 32, IQR 29-35 weeks). Only 2.1% (7/333) of the participants had previously participated in a cohort of individuals born preterm. Women (252/333, 75.7%) and highly educated participants (235/327, 71.9%) were also overrepresented. Good quality data were collected thanks to validation controls implemented on the web platform. The acceptability of potentially sensitive questions was excellent, as very few participants chose the "I prefer not to say" option when available. CONCLUSIONS: Although we identified room for improvement in specific procedures, this pilot study confirmed the great potential for recruiting a large and diverse sample of adults born preterm worldwide, thereby advancing research on adults born preterm.

2008 economic crisis impact on perinatal and infant mortality in Southern European countries.

INTRODUCTION: The study of crisis events provides important lessons to prepare for upcoming events. The Great Recession's impact on perinatal health in Europe can provide relevant insights into the healthcare and social protection systems' response to the protection of the health of the most vulnerable groups. OBJECTIVE: To assess time trends and international disparities in perinatal mortality rates (PMR) and infant mortality rates (IMR), following the Great Recession, and their association with socioeconomic indicators in Portugal, Greece, Italy and Spain. METHODS: Associations were assessed through generalised linear models for all four countries. A Poisson joinpoint regression model was applied to explore PMR and IMR trend changes between 2000 and 2018. Country disparities were analysed using mixed-effects multilevel models. RESULTS: IMR and PMR have decreased overall in the four selected countries between 2000 and 2018. Still, whereas in Spain, Italy and Portugal the decreasing pace was attenuated after 2009, in Greece a positive trend was found after the 2008 crisis. IMR and PMR were significantly associated with socioeconomic indicators in all four countries. National disparities in the evolution of IMR and PMR were significantly associated with most socioeconomic indicators between 2000 and 2018. CONCLUSION: Our results confirm the impact of the Great Recession on PMR and IMR trends in all four countries, taking recurring associations between macroeconomic cycles, variations in mortality trends, macroeconomic volatility and stagnation of IMR and PMR into account. The association with socioeconomic indicators stresses the need to strengthen social protection and healthcare systems to better protect the population's health from the earliest days.

A scoping review on the impact of austerity on healthcare access in the European Union: rethinking austerity for the most vulnerable.

BACKGROUND: There is consensus that the 2008 financial and economic crisis and related austerity measures adversely impacted access to healthcare. In light of the growing debt caused by the COVID-19 crisis, it is uncertain whether a period of austerity will return. OBJECTIVE: This study aims to provide a structured overview of the impact of austerity policies in the EU-28 zone, applied in response to the Great Recession, on access to health care for the adult population, using the five access dimensions by Levesque et al. (2013). METHODS: This study followed the PRISMA extension for Scoping Reviews guideline. Medline (PubMed) and Web of Science were searched between February 2021 and June 2021. Primary studies in the English language published after the 1st of January 2008 reporting on the possible change in access to the healthcare system for the adult population induced by austerity in an EU28 country were included. RESULTS: The final search strategy resulted in 525 articles, of which 75 studies were reviewed for full-text analysis, and a total of 21 studies were included. Results revealed that austerity policy has been primarily associated with a reduction in access to healthcare, described through four main categories: i) Increase in rates of reported unmet needs (86%); ii) Affordability (38%); iii) Appropriateness (38%); iv) and Availability and Accommodation (19%). Vulnerable populations were more affected by austerity measures than the general population when specific safeguards were not in place. The main affected adult vulnerable population groups were: patients with chronic diseases, elderly people, (undocumented) migrants, unemployed, economically inactive people and individuals with lower levels of education or socioeconomic status. CONCLUSION: Austerity measures have led to a deterioration in access to healthcare in the vast majority of the countries studied in the EU-28 zone. Findings should prompt policymakers to rethink the fiscal agenda across all policies in times of economic crisis and focus on the needs of the most vulnerable populations from the health perspective.

Record linkage of routine and cohort data of children in Portugal: challenges and opportunities when using record linkage as a tool for scientific research.

Linking records could serve as a useful tool for scientific research and as a facilitator for local policymaking. This article examines the challenges and opportunities for researchers to lawfully link routinely collected health and education data with cohort data of children when using it as a tool for scientific research in Portugal. Such linking can be lawfully conducted in Portugal if three requirements are met. First, data processing pursues a legitimate purpose, such as scientific research. Secondly, data linking complies with the legal obligations of research entities and researchers, acting as data controllers or processors, and it respects the rights of children as data subjects. Finally, data linking is based on the explicit written consent of those with parental responsibility for the child. So far, the implementation of the General Data Protection Regulation in Portugal has not facilitated record linkage. It is argued that further harmonised implementation of that Regulation across European Union and European Economic Area Member States, establishing a minimum shared denominator for record linkage in scientific research for the common good, including without explicit consent, is needed.

Survey of data collection methods and retention strategies in European birth cohorts of children and adults born very preterm.

BACKGROUND: The long-term follow-up of very preterm and very low birthweight cohorts contributes to valuable evidence to understand life-course outcomes in these vulnerable populations. However, attrition is a major challenge in long-term outcome studies. Examining the techniques used by existing cohorts may help to reveal practices that enhance willingness to continue participation over time. OBJECTIVES: To evaluate the effect of data collection methods and retention strategies on overall retention in European birth cohorts of individuals born very preterm and very low birthweight. METHODS: A survey of European cohorts integrated in the RECAP-preterm Consortium provided data on study characteristics, retention at the most recent follow-up, data collection methods and retention strategies. Cohorts were classified according to participants' age at most recent follow-up as child (<18) or adult cohorts (≥18 years old). RESULTS: Data were obtained for 17 (81%) cohorts (7 adult and 10 child) in 12 countries. Considering the baseline, at the most recent follow-up, overall retention ranged from 10% to 99%. Child cohorts presented higher median retention (68% versus 38% or 52% for adult cohorts with ≤5 or >5 follow-ups) and used relatively more retention strategies. For contact and invitation, cohorts mostly resorted to invitation letters, and to face-to-face interviews for assessments. Study duration was negatively correlated with retention and positively associated with the number of follow-up evaluation. We identified 109 retention strategies, with a median of 6 per cohort; bond-building (n = 41; 38%) was the most utilised, followed by barrier-reduction (n = 36; 33%) and reminders (n = 32; 29%). Retention was not influenced by category or number of strategies. CONCLUSIONS: Regular contact with cohort participants favour retention whilst neither the number nor the categories of retention strategies used seemed to have an influence, suggesting that tailored strategies focussed on participants at higher risk of dropout might be a more effective approach.

Increased interaction and procedural flexibility favoured participation: Study across European cohorts of preterm born individuals.

OBJECTIVE: To understand participation and attrition phenomena variability in European cohorts of individuals born preterm through in-depth exploration of the interplay of situational elements involved. METHODS: Multi-situated qualitative design, using focus groups, semi-structured interviews and collaborative visual methodology with a purposive sample of adults born preterm, parents and professionals (n = 124) from eight cohorts in seven European countries. RESULTS: Most cohort participants were motivated by altruism/solidarity and gratitude/sense of duty to reciprocate (only absent in adults aged 19 - 21), followed by expectation of direct benefit to one's health and knowledge amongst participating adults. Common deterrents were perceived failure in reciprocity as in insufficient/inadequate interaction and information sharing, and postal questionnaires. Combining multipurpose, flexible strategies for contact and assessment, reminders, face-to-face and shorter periodicity and not simply adding retention strategies or financial incentives favoured participation. Professionals' main challenges entailed resources, funding and, European societal changes related to communication and geopolitical environment. CONCLUSION: Retention would benefit from tailoring inclusive strategies throughout the cohorts' life cycle and consistent promotion of reciprocal altruistic research goals. Investing in regular interaction, flexibility in procedures, participant involvement and return of results can help mitigate attrition as well as considering mothers as main facilitators to participating children and impaired adults.

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

BACKGROUND: 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.

Spatial Access Matters: An Analysis of Policy Change and Its Effects on Avoidable Infant Mortality in Portugal.

In 2006, a policy reform restructured the maternal and perinatal healthcare system, including closing smaller maternity units, to further improve care in Portugal. This study aimed to investigate the effects of the 2006 National Program of Maternal and Neonatal Health policy on spatial inequalities in access to care and consequently avoidable infant mortality. A thematic analysis of qualitative data including interviews and surveys and a quantitative spatial analysis using Geographic Information Systems was applied. Spatial inequalities were found which may lead to avoidable infant mortality. Inequalities exist in freedom of choice and autonomy in care, within a medicalized system. Changes in approach to and organization of care would further enhance equitable spatial access to care in maternal health and reduce avoidable infant mortality.

Understanding participation in European cohort studies of preterm children: the views of parents, healthcare professionals and researchers.

BACKGROUND: Retention of participants in cohort studies is a major challenge. A better understanding of all elements involved in participation and attrition phenomena in particular settings is needed to develop effective retention strategies. The study aimed to achieve an in-depth understanding of participant retention in longitudinal cohorts focusing on participants' and researcher's perspectives, across three diverse socio-geographic and cultural settings. METHODS: This study used a triangulation of multi-situated methods to collect data on cohort studies of children born with less than 32 weeks of gestation in Denmark, Italy and Portugal. It included focus groups and individual semi-driven interviewing with involved key actors (i.e. parents, staff, healthcare professionals, researchers) and a collaborative visual methodology. A purposive sample of 48 key actors (n = 13 in Denmark; n = 13 in Italy; n = 22 in Portugal) was collected. A triangulation of phenomenological thematic analysis with discourse analysis was applied. Cross-contextual and context-specific situational elements involved in participation and attrition phenomena in these child cohorts were identified at various levels and stages. RESULTS: Main findings included: situational challenges affecting potential and range of possibilities for implementation strategies (geopolitical environment, societal changes, research funding models); situational elements related to particular strategies acting as deterrents (postal questionnaires) and facilitators (multiple flexible strategies, reminders, regular interaction); main motivations to enrol and participate (altruism/solidarity and gratitude/sense of duty to reciprocate); main motivational deterrents to participate to follow-up waves (lack of bonding, insufficient feedback); entanglement of clinical and research follow-up as facilitator and deterrent. CONCLUSIONS: The multi-situated approach used, addressing the interplay of the lived experience of individuals, was of most value to understand participation variability under different implemented strategies in-context. Cross-contextual and context-specific situational elements that have been influential factors towards participation and attrition in the cohorts were identified.

Impact of macro-socioeconomic determinants on sustainable perinatal health care in Portugal: a qualitative study on the opinion of healthcare professionals and experts.

BACKGROUND: The WHO identified the importance of macro-socioeconomic determinants and political context as interlinked key factors affecting healthcare quality and health equity. As a response to the recent economic and financial crisis, Portugal approved in 2011 the Economic Adjustment Programme (EAP) to obtain financial assistance from the Troika in order to reduce public debt. This study aims to analyse the impact of the economic crisis and the EAP on perinatal healthcare quality for very preterm (VPT) and/or very low birth weight (VLBW) infants, as perceived by healthcare professionals and experts, within the health administrative regions of the two major metropolitan areas in Portugal. METHODS: A qualitative approach was applied to receive an in-depth understanding and accomplish perspective variability. A purposive sampling technique was used. Semi-structured interviews were conducted with twenty-one healthcare professionals and experts between October 2018-July 2019. Inductive thematic analysis was performed which encompassed a five-step categorization procedure. Data analysis was undertaken by utilizing Nvivo2011 software. Evolved themes were then associated with WHO's Quality Standards on Maternal and New-born Care. A framework on the impact of macro-socioeconomic determinants on perinatal health care quality was developed. RESULTS: Although participants did not perceive the quality of perinatal care had deteriorated, the analysis of their accounts on work experience revealed that it was indeed adversely modified in all WHO Quality Standards. Health care provision was perceived as detrimental in five main areas: 1) Availability of human resources; 2) Functional referral systems; 3) Competent and motivated human resources; 4) Emotional support; and 5) Essential physical resources available. Policy reforms by the EAP resulted in reduced timeliness of care, increased waiting times, cuts in sequence and duration of consultations, and deficiencies in follow-up care for VPT/VLBW infants and their mothers. The EAP directly influenced working environment of healthcare professionals by causing stress, burnout, work absence, and brain drain. CONCLUSION: An interrelation between macro-socioeconomic determinants and perinatal health care quality was disclosed. The economic crisis and EAP have adversely modified equitable perinatal health care quality for VPT/VLBW infants and their mothers. Our findings underlined the negative impact of austerity policies on vulnerable populations.

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

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.

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. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/14997.

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.

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.