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.

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.

Perceptions of secondary school teachers towards school expulsion of pregnant adolescents at Igunga District, Tanzania-a qualitative study.

BACKGROUND: In Tanzania, adolescent pregnancy results in a denial of the girl's fundamental right to education. School expulsion of pregnant adolescents is a common practice exercised by teachers in this country for decades. This study aimed to explore the perceptions and feelings of secondary school teachers towards this practice. METHODS: The study used a qualitative approach comprising focus groups and individual semistructured interviews with a purposive sample of sixteen teachers and nine headmasters (n = 25) from nine secondary schools of the rural Igunga district, in Tabora region, Tanzania. Data was collected in March to June 2017 and submitted to thematic analysis. RESULTS: Though most participants were not satisfied with the practice, their role on the expulsion of pregnant students was perceived as mandatory by law and regulations. Main argument in favor was its deterrent effect, yet the review of schools' registries did not sustain that perception. Stigma and fear of contamination added a relevant contribution to its implementation. Conflicting feelings among teachers were also disclosed. CONCLUSION: This study was of most value to understand current perceptions and feelings of those who exercise the practice of banning pregnant adolescents from school in Tanzania, while having identified some of the cultural and social believes acting as influential factors in its pervasiveness. International and national human rights organizations should increase their efforts and campaigns in order to strength social awareness of the benefit of females' education to society as a whole and of adopting policies and practices in support of their equal right to education.

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.