scholarly journals The Rare Disease Research Scholars Program: A training curriculum for clinical researchers with mixed methods evaluation study

2021 ◽  
pp. 1-11
Author(s):  
Debra S. Regier ◽  
Jennifer A. Weaver ◽  
Nancy Cheng ◽  
Mark L. Batshaw ◽  
Mary Ottolini ◽  
...  
Keyword(s):  
Clinical Research ◽  
Needs Assessment ◽  
Rare Disease ◽  
Self Efficacy ◽  
Outcome Evaluation ◽  
Research Network ◽  
Structured Interviews ◽  
Intent To Remain ◽  
Disease Research ◽  
Qualitative Approaches

Rare disease clinician investigators are essential to ensure appropriate diagnosis, care, and treatment for the rapidly growing rare disease population. As these researchers are spread across many specialties, learning the unique skill set for rare disease research (RDR) can be a hurdle and may hinder progress in the field. The need for an RDR focused training program for investigators in many specialties and backgrounds was identified in a needs assessment of trainees in the NIH funded Rare Diseases Clinical Research Network. Based on this information, the Rare Disease Research Scholars Program (RDRSP) was developed. We describe the needs assessment, curriculum creation, scholar recruitment, and outcome evaluation based on four years of programmatic data (2015–2019). This one year-long RDRSP uses a blended approach that includes in-person, web-based, synchronous and asynchronous learning. We evaluated the RDRSP using quantitative and qualitative approaches. Quantitative measures included pre and post questionnaires about knowledge, self-efficacy, and intent to remain in RDR. Data were analyzed using descriptive statistics and a paired t-test. Qualitative semi-structured interviews explored the RDR scholars’ perceptions of the RDRSP; thematic analysis examined the textual data. Quantitative pre- and post-measures were statistically significant in the following areas: 1) improved knowledge content in RDR, 2) enhanced self-efficacy in clinical research, and 3) intent to remain in the field of RDR. Qualitative data analysis found the program supported the development of the scholar’s research skills as well as ‘soft-skills’. By combining training of skills unique to RDR with the more general topics of leadership, mentorship and collaboration among participants in diverse specialties, we created a program that supports the development of the next generation of rare disease clinician investigators and serves as a model for training in other niche research areas.

Temporal trends in surgical procedures for pediatric hydrocephalus: an analysis of the Hydrocephalus Clinical Research Network Core Data Project

2020 ◽  
pp. 1-8
Author(s):  
Mandeep S. Tamber ◽  
John R. W. Kestle ◽  
Ron W. Reeder ◽  
Richard Holubkov ◽  
Jessica Alvey ◽  
...  
Keyword(s):  
Clinical Research ◽  
Temporal Trends ◽  
Patient Characteristics ◽  
Research Network ◽  
Third Ventriculostomy ◽  
Study Cohort ◽  
Core Data ◽  
Pediatric Hydrocephalus ◽  
Short Period ◽  
New Procedures

OBJECTIVEAnalysis of temporal trends in patient populations and procedure types may provide important information regarding the evolution of hydrocephalus treatment. The purpose of this study was to use the Hydrocephalus Clinical Research Network’s Core Data Project to identify meaningful trends in patient characteristics and the surgical management of pediatric hydrocephalus over a 9-year period.METHODSThe Core Data Project prospectively collected patient and procedural data on the study cohort from 9 centers between 2008 and 2016. Logistic and Poisson regression were used to test for significant temporal trends in patient characteristics and new and revision hydrocephalus procedures.RESULTSThe authors analyzed 10,149 procedures in 5541 patients. New procedures for hydrocephalus (shunt or endoscopic third ventriculostomy [ETV]) decreased by 1.5%/year (95% CI −3.1%, +0.1%). During the study period, new shunt insertions decreased by 6.5%/year (95% CI −8.3%, −4.6%), whereas new ETV procedures increased by 12.5%/year (95% CI 9.3%, 15.7%). Revision procedures for hydrocephalus (shunt or ETV) decreased by 4.2%/year (95% CI −5.2%, −3.1%), driven largely by a decrease of 5.7%/year in shunt revisions (95% CI −6.8%, −4.6%). Concomitant with the observed increase in new ETV procedures was an increase in ETV revisions (13.4%/year, 95% CI 9.6%, 17.2%). Because revisions decreased at a faster rate than new procedures, the Revision Quotient (ratio of revisions to new procedures) for the Network decreased significantly over the study period (p = 0.0363). No temporal change was observed in the age or etiology characteristics of the cohort, although the proportion of patients with one or more complex chronic conditions significantly increased over time (p = 0.0007).CONCLUSIONSOver a relatively short period, important changes in hydrocephalus care have been observed. A significant temporal decrease in revision procedures amid the backdrop of a more modest change in new procedures appears to be the most notable finding and may be indicative of an improvement in the quality of surgical care for pediatric hydrocephalus. Further studies will be directed at elucidation of the possible drivers of the observed trends.

scholarly journals Exploring the consequences of teachers’ self-efficacy: a case of teachers of English as a foreign language

2020 ◽  
Vol 5 (1) ◽  
Author(s):  
Goudarz Alibakhshi ◽  
Fariborz Nikdel ◽  
Akram Labbafi
Keyword(s):  
Job Satisfaction ◽  
Qualitative Research ◽  
Foreign Language ◽  
Self Efficacy ◽  
Teaching Practices ◽  
Research Method ◽  
Structured Interviews ◽  
Qualitative Research Method ◽  
Burn Out ◽  
Efl Teachers

AbstractTeacher self-efficacy has been abundantly studied. However, it seems that the consequences of teachers’ self-efficacy have not been appropriately explored yet. The research objective was to investigate the consequences of teachers’ teaching self-efficacy. The researchers used a qualitative research method. They collected the data through semi-structured interviews with 20 EFL teachers who were selected through purposive sampling. The interviews were content analyzed thematically. Findings showed that self-efficacy has different consequences: pedagogical, learner-related, and psychological. Each consequence has several sub-categories. It is concluded that high self-efficacy affects teachers’ teaching practices, learners’ motivation, and achievement. It also affects teachers’ burn-out status, psychological being, as well as their job satisfaction. The findings can be theoretically and pedagogically important to EFL teachers, teacher-trainers, and administrators of educational settings.

scholarly journals Educational Intervention to Improve Citizen’s Healthcare Participation Perception in Rural Japanese Communities: A Pilot Study

2021 ◽  
Vol 18 (4) ◽  
pp. 1782
Author(s):  
Ryuichi Ohta ◽  
Yoshinori Ryu ◽  
Jun Kitayuguchi ◽  
Chiaki Sano ◽  
Karen D. Könings
Keyword(s):  
Rural Communities ◽  
Self Efficacy ◽  
Cognitive Theory ◽  
Health Management ◽  
Intervention Group ◽  
Educational Interventions ◽  
Medical Professionals ◽  
Control Group ◽  
Structured Interviews ◽  
Japanese Elderly

In this mixed-methods study, we hypothesized that social cognitive theory (SCT)-based educational interventions for healthcare participation can improve the self-efficacy of older rural citizens in participating in their health management without any difficulties. Quasi-experimental study before and after SCT-based educational interventions and semi-structured interviews were conducted. Participants were Japanese elderly (>65 years) from rural communities. Propensity score matching was performed to estimate the effectiveness of educational interventions on participants’ perception (intervention: n = 156; control: n = 121). Interview contents were transcribed verbatim and analyzed based on thematic analysis. The intervention group scored significantly higher than the control group for participation in planning and managing self-care. Interviews revealed three themes: ability to manage health conditions, relationship with medical professionals, and relationship among citizens. Participants reported difficulties in judging symptoms and communicating with medical professionals. Hierarchy and low motivation to participate in healthcare hindered collaboration. The findings suggest that SCT-based educational interventions can positively impact rural citizens’ self-efficacy in healthcare participation.

scholarly journals 947. Stroke demographics and risk factor profile in HIV infected individuals in Florida

2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S506-S506
Author(s):  
Folusakin Ayoade ◽  
Dushyantha Jayaweera
Keyword(s):  
Risk Factors ◽  
Risk Factor ◽  
Clinical Research ◽  
Stroke Risk ◽  
Research Network ◽  
Categorical Variables ◽  
People Living With Hiv ◽  
Risk Factor Profile ◽  
Stroke Risk Factors ◽  
Living With Hiv

Abstract Background The risk of ischemic stroke (IS) is known to be higher in people living with HIV (PLWH) than uninfected controls. However, information about the demographics and risk factors for hemorrhagic stroke (HS) in PLWH is scant. Specifically, very little is known about the differences in the stroke risk factors between HS and IS in PLWH. The goal of this study was to determine the demographics and risk factor differences between HS and IS in PLWH. Methods We retrospectively analyzed the demographic and clinical data of PLWH in OneFlorida (1FL) Clinical Research Consortium from October 2015 to December 2018. 1FL is a large statewide clinical research network and database which contains health information of over 15 million patients, 1240 clinical practices, and 22 hospitals. We compared HS and IS based on documented ICD 9 and 10 diagnostic codes and extracted information about sociodemographic data, traditional stroke risk factors, Charlson comorbidity scores, habits, HIV factors, diagnostic modalities and medications. Statistical significance was determined using 2-sample T-test for continuous variables and adjusted Pearson chi square for categorical variables. Odds ratio (OR) and 95% confidence intervals (CI) between groups were compared. Results Overall, from 1FL sample of 13986 people living with HIV, 574 subjects had strokes during the study period. The rate of any stroke was 18.2/1000 person-years (PYRS). The rate of IS was 10.8/1000 PYRS while the rate of HS was 3.7/1000 PYRS, corresponding to 25.4% HS of all strokes in the study. Table 1 summarizes the pertinent demographic and risk factors for HS and IS in PLWH in the study. Table 1: Summary of pertinent demographic and risk factors for hemorrhagic and ischemic strokes in people living with HIV from One Florida database Conclusion In this large Floridian health database, demographics and risk factor profile differs between HS and IS in PLWH. Younger age group is associated with HS than IS. However, hypertension, hyperlipidemia and coronary artery disease are more likely to contribute to IS than HS in PLWH. Further research is needed to better understand the interplay between known and yet unidentified risk factors that may be contributing to HS and IS in PLWH. Disclosures All Authors: No reported disclosures

scholarly journals Participatory Needs Assessment and Action Planning for a Clinical and Translational Research Network

2020 ◽  
pp. 1-23
Author(s):  
LaKaija J. Johnson ◽  
Jolene Rohde ◽  
Mary E. Cramer ◽  
Lani Zimmerman ◽  
Carol R. Geary ◽  
...  
Keyword(s):  
Needs Assessment ◽  
Translational Research ◽  
Action Planning ◽  
Research Network ◽  
Clinical And Translational Research

scholarly journals QOLP-04. PILOT STUDY OF A VIDEOCONFERENCE-BASED PSYCHOLOGICAL INTERVENTION FOR FAMILY CAREGIVERS OF PATIENTS WITH MALIGNANT GLIOMAS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii175-ii175
Author(s):  
Deborah Forst ◽  
Michelle Mesa ◽  
Emilia Kaslow-Zieve ◽  
Areej El-Jawahri ◽  
Joseph Greer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Self Efficacy ◽  
Coping Skills ◽  
Malignant Gliomas ◽  
Anxiety Symptoms ◽  
Structured Interviews ◽  
Post Intervention ◽  
Clinically Significant ◽  
And Coping

Abstract BACKGROUND Caregivers of patients with malignant gliomas experience substantial anxiety symptoms while caring for someone with progressive neurological decline. Yet, interventions to reduce psychological distress and improve quality of life (QoL) in this caregiver population are lacking. METHODS We conducted an open pilot study evaluating feasibility and acceptability of a cognitive behavioral therapy-based intervention for caregivers of patients with malignant gliomas with clinically significant anxiety (Generalized Anxiety Disorder [GAD-7] score ≥ 5). Caregivers participated in six videoconference sessions with a mental health provider. We defined the intervention as feasible if ≥ 70% of eligible caregivers enrolled and ≥ 70% of those enrolled completed ≥ 50% of sessions. We evaluated intervention acceptability in semi-structured interviews. Caregivers completed baseline and post-intervention surveys assessing anxiety and depression symptoms (Hospital Anxiety and Depression Scale), QoL (Caregiver Oncology Quality of Life Questionnaire), caregiving burden (Caregiver Reaction Assessment), self-efficacy (Lewis Cancer Self-Efficacy Scale), and perceived coping skills (Measure of Current Status-Part A). We explored post-intervention changes using paired t-tests. RESULTS We obtained consent from 70.0% (21/30) of caregivers approached, of which 66.7% (14/21) had clinically significant anxiety and thus were eligible to participate (mean age=55.7 years, 64.3% female). Among enrolled caregivers, 71.4% (10/14) completed ≥ 50% of sessions. In semi-structured interviews, all participants found the intervention helpful and valued the ability to participate remotely via videoconference. Among caregivers who completed at least one session, 80.0% (8/10) completed all assessments and were included in analyses. Post-intervention, caregivers reported reduced anxiety symptoms (P=.02) and improved QoL (P=.03) and coping skills (P=.001). We found no significant change in depression, caregiving burden, or self-efficacy. CONCLUSION Our videoconference-based intervention is feasible and acceptable to caregivers. Participants reported significant improvements in anxiety symptoms, quality of life, and coping skills post-intervention, supporting further investigation of the intervention in a randomized controlled trial.

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