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Lost to follow-up among pregnant women in a multi-site community based maternal and newborn health registry: a prospective study.

ABSTRACT: BACKGROUND:It is important when conducting epidemiologic studies to closely monitor lost to follow up (LTFU) rates. A high LTFU rate may lead to incomplete study results which in turn can introduce bias to the trial or study, threatening the validity of the findings. There is scarce information on LTFU in prospective community-based perinatal epidemiological studies. This paper reports the rates of LTFU, describes socio-demographic characteristics, and pregnancy/delivery outcomes of mothers LTFU in a large community-based pregnancy registry study. METHODS:Data were from a prospective, population-based observational study of the Global Network for Women's and Children's Health Research Maternal Newborn Health Registry (MNHR). This is a multi-centre, international study in which pregnant women were enrolled in mid-pregnancy, followed through parturition and 42 days post-delivery. Risk for LTFU was calculated within a 95%CI. RESULTS:A total of 282,626 subjects were enrolled in this study, of which 4,893 were lost to follow-up. Overall, there was a 1.7% LTFU to follow up rate. Factors associated with a higher LTFU included mothers who did not know their last menstrual period (RR 2.2, 95% CI 1.1, 4.4), maternal age of < 20 years (RR 1.2, 95% CI 1.1, 1.3), women with no formal education (RR 1.2, 95% CI 1.1, 1.4), and attending a government clinic for antenatal care (RR 2.0, 95% CI 1.4, 2.8). Post-natal factors associated with a higher LTFU rate included a newborn with feeding problems (RR 1.6, 94% CI 1.2, 2.2). CONCLUSIONS:The LTFU rate in this community-based registry was low (1.7%). Maternal age, maternal level of education, pregnancy status at enrollment and using a government facility for ANC are factors associated with being LTFU. Strategies to ensure representation and high retention in community studies are important to informing progress toward public health goals. TRIAL REGISTRATION:Registration at the Clinicaltrials.gov (ID# NCT01073475).

SUBMITTER: Marete I

PROVIDER: S-EPMC4464022 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature

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Lost to follow-up among pregnant women in a multi-site community based maternal and newborn health registry: a prospective study.

Marete Irene I Tenge Constance C Chemweno Carolyne C Bucher Sherri S Pasha Omrana O Ramadurg Umesh Y UY Mastiholi Shivanand C SC Chiwila Melody M Patel Archana A Althabe Fernando F Garces Ana A Moore Janet L JL Liechty Edward A EA Derman Richard J RJ Hibberd Patricia L PL Hambidge K K Goldenberg Robert L RL Carlo Waldemar A WA Koso-Thomas Marion M McClure Elizabeth M EM Esamai Fabian F

Reproductive health 20150608

<h4>Background</h4>It is important when conducting epidemiologic studies to closely monitor lost to follow up (LTFU) rates. A high LTFU rate may lead to incomplete study results which in turn can introduce bias to the trial or study, threatening the validity of the findings. There is scarce information on LTFU in prospective community-based perinatal epidemiological studies. This paper reports the rates of LTFU, describes socio-demographic characteristics, and pregnancy/delivery outcomes of moth ...[more]

PMID: 26062899

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Project description:BackgroundThe Global Network for Women's and Children's Health Research (Global Network) supports and conducts clinical trials in resource-limited countries by pairing foreign and U.S. investigators, with the goal of evaluating low-cost, sustainable interventions to improve the health of women and children. Accurate reporting of births, stillbirths, neonatal deaths, maternal mortality, and measures of obstetric and neonatal care is critical to efforts to discover strategies for improving pregnancy outcomes in resource-limited settings. Because most of the sites in the Global Network have weak registration within their health care systems, the Global Network developed the Maternal Newborn Health Registry (MNHR), a prospective, population-based registry of pregnancies at the Global Network sites to provide precise data on health outcomes and measures of care.MethodsPregnant women are enrolled in the MNHR if they reside in or receive healthcare in designated groups of communities within sites in the Global Network. For each woman, demographic, health characteristics and major outcomes of pregnancy are recorded. Data are recorded at enrollment, the time of delivery and at 42 days postpartum.ResultsFrom 2010 through 2013 Global Network sites were located in Argentina, Guatemala, Belgaum and Nagpur, India, Pakistan, Kenya, and Zambia. During this period, 283,496 pregnant women were enrolled in the MNHR; this number represented 98.8% of all eligible women. Delivery data were collected for 98.8% of women and 42-day follow-up data for 98.4% of those enrolled. In this supplement, there are a series of manuscripts that use data gathered through the MNHR to report outcomes of these pregnancies.ConclusionsDeveloping public policy and improving public health in countries with poor perinatal outcomes is, in part, dependent upon understanding the outcome of every pregnancy. Because the worst pregnancy outcomes typically occur in countries with limited health registration systems and vital records, alternative registration systems may prove to be highly valuable in providing data. The MNHR, an international, multicenter, population-based registry, assesses pregnancy outcomes over time in support of efforts to develop improved perinatal healthcare in resource-limited areas.

Project description:BackgroundThe Global Network for Women's and Children's Health Research (Global Network) conducts clinical trials in resource-limited countries through partnerships among U.S. investigators, international investigators based in in low and middle-income countries (LMICs) and a central data coordinating center. The Global Network's objectives include evaluating low-cost, sustainable interventions to improve women's and children's health in LMICs. Accurate reporting of births, stillbirths, neonatal deaths, maternal mortality, and measures of obstetric and neonatal care is critical to determine strategies for improving pregnancy outcomes. In response to this need, the Global Network developed the Maternal Newborn Health Registry (MNHR), a prospective, population-based registry of pregnant women, fetuses and neonates receiving care in defined catchment areas at the Global Network sites. This publication describes the MNHR, including participating sites, data management and quality and changes over time.MethodsPregnant women who reside in or receive healthcare in select communities are enrolled in the MNHR of the Global Network. For each woman and her offspring, sociodemographic, health care, and the major outcomes through 42-days post-delivery are recorded. Study visits occur at enrollment during pregnancy, at delivery and at 42 days postpartum.ResultsFrom 2010 through 2018, the Global Network MNHR sites were located in Guatemala, Belagavi and Nagpur, India, Pakistan, Democratic Republic of Congo, Kenya, and Zambia. During this period at these sites, 579,140 pregnant women were consented and enrolled in the MNHR, nearly 99% of all eligible women. Delivery data were collected for 99% of enrolled women and 42-day follow-up data for 99% of those delivered. In this supplement, the trends over time and assessment of differences across geographic regions are analyzed in a series of 18 manuscripts utilizing the MNHR data.ConclusionsImproving maternal, fetal and newborn health in countries with poor outcomes requires an understanding of the characteristics of the population, quality of health care and outcomes. Because the worst pregnancy outcomes typically occur in countries with limited health registration systems and vital records, alternative registration systems may prove to be highly valuable in providing data. The MNHR, an international, multicenter, population-based registry, assesses pregnancy outcomes over time in support of efforts to develop improved perinatal healthcare in resource-limited areas. Trial Registration The Maternal Newborn Health Registry is registered at Clinicaltrials.gov (ID# NCT01073475). Registered February 23, 2019. https://clinicaltrials.gov/ct2/show/NCT01073475.

Project description:Long-term outcome studies are frequently hindered by a decreasing frequency of patient follow-up with the treating surgeon over time. Whether this attrition represents a "loss of faith" in their index surgeon or the realities of a geographically mobile society has never been assessed in a population of patients undergoing spinal surgery. The purpose of this article is to determine the frequency with which patients who have undergone prior surgery and develop new problems attempt to follow-up with their index spine surgeon. The study design was a population survey. All patients seen at two university-based spine centers over a 3-month period were surveyed regarding prior spine surgery. The questionnaire asked details of the previous operation, whether the patient had sought follow-up with their index surgeon, why the patient did not continue treatment with that surgeon, and whether the patient was satisfied with their prior treatment. Sixty-nine patients completed the survey. Prior operations were lumbar (53 patients) and cervical (16). When asked the reason for not seeing their prior surgeon, 10 patients (15%) stated that they (the patient) had moved and 16 (23%) responded that their surgeon no longer practiced in the area. Thirteen (19%) were unhappy with their previous care, 22 (32%) were seeking a second opinion, and 7 (10%) were told they needed more complex surgery. Thirty-seven (54%) discussed their symptoms with their original surgeon before seeking another surgeon. Although 32 patients (46%) had not discussed their new complaints with their index surgeon, only 3 patients (4%) chose not to return to their prior surgeon despite having the opportunity to do so. Forty-nine patients (71%) were satisfied with their prior surgical care, and 42 patients (61%) would undergo the index operation again. Most of the patients seen at the authors' practices after undergoing prior spine surgery elsewhere failed to follow up with their prior spine surgeon for geographical reasons. It appears that the majority of patients who develop new spinal complaints will seek out their treating surgeon when possible. This suggests that patient attrition over long-term follow-up may reflect a geographically mobile population rather than patient dissatisfaction with prior treatment.

Project description:BackgroundIncomplete ascertainment of outcomes in randomized controlled trials (RCTs) is likely to bias final study results if reasons for unavailability of patient data are associated with the outcome of interest. The primary objective of this study is to assess the potential impact of loss to follow-up on the estimates of treatment effect. The secondary objectives are to describe, for published RCTs, (1) the reporting of loss to follow-up information, (2) the analytic methods used for handling loss to follow-up information, and (3) the extent of reported loss to follow-up.MethodsWe will conduct a systematic review of reports of RCTs recently published in five top general medical journals. Eligible RCTs will demonstrate statistically significant effect estimates with respect to primary outcomes that are patient-important and expressed as binary data. Teams of 2 reviewers will independently determine eligibility and extract relevant information from each eligible trial using standardized, pre-piloted forms. To assess the potential impact of loss to follow-up on the estimates of treatment effect we will, for varying assumptions about the outcomes of participants lost to follow-up (LTFU), calculate (1) the percentage of RCTs that lose statistical significance and (2) the mean change in effect estimate across RCTs. The different assumptions we will test are the following: (1) none of the LTFU participants had the event; (2) all LTFU participants had the event; (3) all LTFU participants in the treatment group had the event; none of those in the control group had it (worst case scenario); (4) the event incidence among LTFU participants (relative to observed participants) increased, with a higher relative increase in the intervention group; and (5) the event incidence among LTFU participants (relative to observed participants) increased in the intervention group and decreased in the control group.DiscussionWe aim to make our objectives and methods transparent. The results of this study may have important implications for both clinical trialists and users of the medical literature.

Dataset Information

Lost to follow-up among pregnant women in a multi-site community based maternal and newborn health registry: a prospective study.

Publications

Lost to follow-up among pregnant women in a multi-site community based maternal and newborn health registry: a prospective study.

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