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

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sandra C. S. Marques ◽  
◽  
Julia Doetsch ◽  
Georgia Abate ◽  
Anne Brødsgaard ◽  
...  
Keyword(s):  
Cohort Studies ◽  
Lived Experience ◽  
Healthcare Professionals ◽  
Implementation Strategies ◽  
Influential Factors ◽  
Societal Changes ◽  
Context Specific ◽  
Situated Approach ◽  
Purposive Sample

Abstract 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.

scholarly journals Strategies to Integrate Genomic Medicine into Clinical Care: Evidence from the IGNITE Network

2021 ◽  
Vol 11 (7) ◽  
pp. 647
Author(s):  
Nina R. Sperber ◽  
Olivia M. Dong ◽  
Megan C. Roberts ◽  
Paul Dexter ◽  
Amanda R. Elsey ◽  
...  
Keyword(s):  
Precision Medicine ◽  
Program Implementation ◽  
Clinical Care ◽  
Genomic Medicine ◽  
Implementation Strategies ◽  
Clinical Decision ◽  
Implementing Change ◽  
Implementation Outcomes ◽  
Planning Framework

The complexity of genomic medicine can be streamlined by implementing some form of clinical decision support (CDS) to guide clinicians in how to use and interpret personalized data; however, it is not yet clear which strategies are best suited for this purpose. In this study, we used implementation science to identify common strategies for applying provider-based CDS interventions across six genomic medicine clinical research projects funded by an NIH consortium. Each project’s strategies were elicited via a structured survey derived from a typology of implementation strategies, the Expert Recommendations for Implementing Change (ERIC), and follow-up interviews guided by both implementation strategy reporting criteria and a planning framework, RE-AIM, to obtain more detail about implementation strategies and desired outcomes. We found that, on average, the three pharmacogenomics implementation projects used more strategies than the disease-focused projects. Overall, projects had four implementation strategies in common; however, operationalization of each differed in accordance with each study’s implementation outcomes. These four common strategies may be important for precision medicine program implementation, and pharmacogenomics may require more integration into clinical care. Understanding how and why these strategies were successfully employed could be useful for others implementing genomic or precision medicine programs in different contexts.

scholarly journals Variability of Prognostic Results Based on Biological Parameters in Sickle Cell Disease Cohort Studies in Children: What Should Clinicians Know?

Children ◽  
2021 ◽  
Vol 8 (2) ◽  
pp. 143
Author(s):  
Julie Sommet ◽  
Enora Le Roux ◽  
Bérengère Koehl ◽  
Zinedine Haouari ◽  
Damir Mohamed ◽  
...  
Keyword(s):  
Statistical Analysis ◽  
Sickle Cell Disease ◽  
Cohort Studies ◽  
Statistical Methods ◽  
Sickle Cell ◽  
Biological Parameters ◽  
Analysis Method ◽  
Cell Disease ◽  
Statistical Analysis Method

Background: Many pediatric studies describe the association between biological parameters (BP) and severity of sickle cell disease (SCD) using different methods to collect or to analyze BP. This article assesses the methods used for collection and subsequent statistical analysis of BP, and how these impact prognostic results in SCD children cohort studies. Methods: Firstly, we identified the collection and statistical methods used in published SCD cohort studies. Secondly, these methods were applied to our cohort of 375 SCD children, to evaluate the association of BP with cerebral vasculopathy (CV). Results: In 16 cohort studies, BP were collected either once or several times during follow-up. The identified methods in the statistical analysis were: (1) one baseline value per patient (2) last known value; (3) mean of all values; (4) modelling of all values in a two-stage approach. Applying these four different statistical methods to our cohort, the results and interpretation of the association between BP and CV were different depending on the method used. Conclusion: The BP prognostic value depends on the chosen statistical analysis method. Appropriate statistical analyses of prognostic factors in cohort studies should be considered and should enable valuable and reproducible conclusions.

Efficacy of electronic cigarettes for tobacco smoking cessation: An adapted systematic review

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
T O'Dowd
Keyword(s):  
Smoking Cessation ◽  
Cohort Studies ◽  
Randomised Controlled Trials ◽  
Electronic Cigarettes ◽  
Controlled Trials ◽  
Significant Heterogeneity ◽  
Smoking Reduction ◽  
Significant Difference ◽  
Randomised Controlled

Abstract Background Worldwide smoking remains the leading cause of preventable morbidity and mortality. Electronic cigarettes (ECs) are increasingly used by tobacco smokers as an aid to smoking cessation; however, their efficacy remains uncertain. Methods Electronic databases, clinical trial registries and grey literature sources were searched. The aim was to examine randomised controlled trials or prospective cohort studies, published since the 2016 Cochrane review on this topic, that assessed the efficacy of ECs in achieving smoking cessation among current smokers. Results Two RCTs and five cohort studies, including a total of 16,460 participants, were eligible for inclusion. One RCT found sustained 1-year abstinence of 18.0% in the EC group versus 9.9% in the nicotine replacement therapy group (RR: 1.83; 95% CI 1.30 to 2.58; P < 0.001). The second RCT did not find a statistically significant difference in abstinence rates between EC users and non-users (RR 0.71). Of the five included cohort studies, four reported statistically significant RRs. Two found a positive association (RRs of 1.45 and 1.84) between EC use and smoking cessation but two studies showed EC use was associated with reduced smoking cessation (RRs of 0.25 and 0.35). Due to significant heterogeneity between the studies the data were deemed unsuitable for pooling into a meta-analysis. All trials assessing smoking reduction reported higher rates of reduction among EC users. No serious adverse events were reported with EC use. Follow-up periods of included trials ranged from one to four years, with an average of 1.6 years. Conclusions There is limited, low-quality evidence that ECs are an effective intervention for smoking cessation and smoking reduction. The overall quality of evidence is low as it is based on a small number of studies with inconsistent and imprecise results. Due to the short follow-up periods of the included trials, the long-term safety of ECs is unclear from this review. Key messages Limited evidence that electronic cigarettes are an effective smoking cessation intervention. Further well-designed randomised controlled trials are required to investigate the efficacy of ECs for smoking cessation.

scholarly journals Multi-trajectories of lipid indices with incident cardiovascular disease, heart failure, and all-cause mortality: 23 years follow-up of two US cohort studies

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Fatemeh Koohi ◽  
Davood Khalili ◽  
Mohammad Ali Mansournia ◽  
Farzad Hadaegh ◽  
Hamid Soori
Keyword(s):  
Heart Failure ◽  
Cardiovascular Disease ◽  
Cohort Studies ◽  
Significant Risk ◽  
Density Lipoprotein ◽  
Lipid Levels ◽  
Cvd Risk ◽  
All Cause Mortality ◽  
Over Time

Abstract Background Understanding the distinct patterns (trajectories) of variation in blood lipid levels before diagnosing cardiovascular disease (CVD) might carry important implications for improving disease prevention or treatment. Methods We investigated 14,373 participants (45.5% men) aged 45–84 from two large US prospective cohort studies with a median of 23 years follow-up. First, we jointly estimated developmental trajectories of lipid indices, including low-density lipoprotein cholesterol (LDL-C), high-density lipoprotein cholesterol (HDL-C), and triglyceride (TG) concentrations using group-based multi-trajectory modeling. Then, the association of identified multi-trajectories with incident CVD, heart failure, and all-cause mortality were examined using Cox proportional hazard model. Results Seven distinct multi-trajectories were identified. The majority of participants (approximately 80%) exhibited decreasing LDL-C but rising TG levels and relatively stable HDL-C levels. Compared to the individuals with healthy and stable LDL-C, HDL-C, and TG levels, those in other groups were at significant risk of incident CVD after adjusting for other conventional risk factors. Individuals with the highest but decreasing LDL-C and borderline high and rising TG levels over time were at the highest risk than those in other groups with a 2.22-fold risk of CVD. Also, those with the highest and increased triglyceride levels over time, over optimal and decreasing LDL-C levels, and the lowest HDL-C profile had a nearly 1.84 times CVD risk. Even individuals in the multi-trajectory group with the highest HDL-C, optimal LDL-C, and optimal TG levels had a significant risk (HR, 1.45; 95% CI 1.02–2.08). Furthermore, only those with the highest HDL-C profile increased the risk of heart failure by 1.5-fold (95% CI 1.07–2.06). Conclusions The trajectories and risk of CVD identified in this study demonstrated that despite a decline in LDL-C over time, a significant amount of residual risk for CVD remains. These findings suggest the impact of the increasing trend of TG on CVD risk and emphasize the importance of assessing the lipid levels at each visit and undertaking potential interventions that lower triglyceride concentrations to reduce the residual risk of CVD, even among those with the optimal LDL-C level.

The Mindfulness-Based Stress Reduction Program (MBSR) Reduces Stress-Related Psychological Distress in Healthcare Professionals

2010 ◽  
Vol 13 (2) ◽  
pp. 897-905 ◽  
Author(s):  
Andrés Martín-Asuero ◽  
Gloria García-Banda
Keyword(s):  
Experimental Study ◽  
Psychological Distress ◽  
Stress Reduction ◽  
Health Professionals ◽  
Healthcare Professionals ◽  
Training Programs ◽  
The Other ◽  
Reduction Program ◽  
Mindfulness Based Stress Reduction

This semi-experimental study examines how Mindfulness facilitates a distress reduction in a group of health professionals. The sample comprises 29 professionals seeking stress reduction who undertook an 8 weeks psico-educative intervention, involving 28 hours of class, based on a program called Mindfulness-based Stress Reduction or MBSR. Results show a 35% reduction of distress, from percentile 75 to 45, combined with a 30% reduction in rumination and a 20% decrease in negative affect. These benefits lasted during the 3 months of the follow up period. The correlation analysis indicates that the decrease in distress is significantly related to the other two variables. These results confirm the effectiveness of MBSR to decrease distress and its applicability in training programs for health professionals.

Remote Follow-up of Self-isolating COVID-19 Patients with a Patient Portal: Protocol for a Mixed-method Pilot Study (The Opal-COVID Study) (Preprint)

2021 ◽  
Author(s):  
David Lessard ◽  
Kim Engler ◽  
Yuanchao Ma ◽  
Adriana Rodriguez Cruz ◽  
Serge Vicente ◽  
...  
Keyword(s):  
Patient Outcomes ◽  
Mixed Method ◽  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Sociodemographic Characteristics ◽  
Patient Portal ◽  
Implementation Outcomes ◽  
Service Outcomes ◽  
Qualitative Analyses

BACKGROUND Individuals diagnosed with COVID-19 are instructed to self-isolate at home. However, during self-isolation, they may experience anxiety and insufficient care. Some patient portals can allow patients to self-monitor and share their health status with healthcare professionals for remote follow-up, but little data is available on the feasibility of their use. OBJECTIVE This manuscript presents the protocol of the Opal-COVID Study which has four objectives: 1) assess the implementation of using the Opal patient portal for distance monitoring of COVID-19 patients self-isolating at home; 2) identify influences on the intervention’s implementation; and describe 3) service and 4) patient outcomes of this intervention. METHODS This mixed-method pilot study aims to recruit 50 COVID-19 patient participants tested at the McGill University Health Centre (MUHC, Montreal, Canada) for 14 days of remote follow-up. With access to questionnaires through the Opal patient portal smartphone app, configured for this study, patients will complete a daily self-assessment of symptoms, vital signs, and mental health, monitored by a nurse, and receive subsequent teleconsultations, as needed. Study questionnaires will be administered to collect data on sociodemographic characteristics, medical background, implementation outcomes (acceptability, usability, and respondent burden) and patient satisfaction. Coordinator logbook entries will inform on feasibility outcomes, namely, recruitment/retention rates and fidelity, as well as on the frequency and nature of contacts with healthcare professionals via Opal. The statistical analyses for Objectives 1 (implementation outcomes), 3 (service outcomes), and 4 (patient outcomes) will evaluate the effects of time and sociodemographic characteristics on the outcomes. For Objectives 1 (implementation outcomes) and 4 (patient outcomes), the statistical analyses will also examine the attainment of predefined success thresholds. As to the qualitative analyses, for Objective 2 (influences on implementation), semi-structured qualitative interviews will be conducted with four groups of stakeholders (i.e., patient participants, healthcare professionals, technology developers and study administrators) and submitted to content analysis, guided by the Consolidated Framework for Implementation Research to help identify barriers and facilitators of implementation. For Objective 3 (service outcomes), reasons for contacting healthcare professionals through Opal will also be submitted to content analysis. RESULTS Between December 2020 and March 2021, 51 patient-participants were recruited. Qualitative interviews were conducted with 39 involved stakeholders, from April to September 2021. Delays in the study process were experienced due to implemented measures at the MUHC to address COVID-19 but the quantitative and qualitative analyses are currently underway. CONCLUSIONS This protocol is designed to generate multidisciplinary knowledge on the implementation of a patient portal-based COVID-19 care intervention and will lead to a comprehensive understanding of feasibility, stakeholder experience, and influences on implementation that may prove useful for scaling up similar interventions. CLINICALTRIAL ClinicalTrials.gov identifier NCT04978233.

The bird dancer and the warrior king: Divergent lived experiences of Tourette syndrome in Bali

2017 ◽  
Vol 54 (4) ◽  
pp. 540-561 ◽  
Author(s):  
Robert Lemelson ◽  
Annie Tucker
Keyword(s):  
Lived Experience ◽  
Tourette Syndrome ◽  
Subjective Experience ◽  
Influential Factors ◽  
Treatment Modalities ◽  
Visual Anthropology ◽  
Subjective Experiences ◽  
Term Outcome ◽  
Long Term Outcome

In the past two decades, ethnographic, epidemiological and interdisciplinary research has robustly established that culture is significant in determining the long-term outcomes of people with neurodevelopmental, neuropsychiatric and mood disorders. Yet these cultural factors are certainly not uniform across discrete individual experiences. Thus, in addition to illustrating meaningful differences for people with neuropsychiatric disorder between different cultures, ethnography should also help detail the variations within a culture. Different subjective experiences or outcomes are not solely due to biographical idiosyncrasies—rather, influential factors arising from the same culture can have different impacts on different people. When taking a holistic and intersectional perspective on lived experience, it is crucial to understand the interaction of these factors for people with neuropsychiatric disorders. This paper teases apart such interactions, utilizing comparative case studies of the disparate subjective experiences and illness trajectories of two Balinese people with Tourette syndrome who exhibit similar symptoms. Based on longitudinal person-centered ethnography integrating clinical, psychological, and visual anthropology, this intersectional approach goes beyond symptom interpretation and treatment modalities to identify gendered embodiment and marital practices as influenced by caste to be significant determinants in subjective experience and long-term outcome.

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