Serving Underserved Patients with Primary Immune Deficiency Disorders: A Pilot Educational Program for Clinical Fellows.
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SUBMITTER: Galant-Swafford J
PROVIDER: S-EPMC9558029 | biostudies-literature | 2023 Feb
REPOSITORIES: biostudies-literature
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Serving Underserved Patients with Primary Immune Deficiency Disorders: A Pilot Educational Program for Clinical Fellows.
Galant-Swafford Jessica J George Elizabeth E Meyer Anna A
Journal of clinical immunology 20221013 2
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Project description:BackgroundThe Mississippi Community Research Fellows Training Program (MSCRFTP) is a 15-week program conducted in Jackson, MS, USA consisting of training in the areas of evidence-based public health, research methods, research ethics, and cultural competency. The purpose of the program was to increase community knowledge and understanding of public health research, develop community-based projects that addressed health disparity in the participants' community, increase individual and community capacity, and to engage community members as equal partners in the research process.MethodsA comprehensive evaluation of the MSCRFTP was conducted that included both quantitative and qualitative methods. All participants were asked to complete a baseline, midterm, and final assessment as part of their program requirements. Knowledge gained was assessed by comparing baseline assessment responses to final assessment responses related to 27 key content areas addressed in the training sessions. Assessments also collected participants' attitudes toward participating in research within their communities, their perceived influence over community decisions, and their perceptions of community members' involvement in research, satisfaction with the program, and the program's impact on the participants' daily practice and community work.ResultsTwenty-one participants, the majority of which were female and African-American, completed the MSCRFTP. Knowledge of concepts addressed in 15 weekly training sessions improved significantly on 85.2% of 27 key areas evaluated (p < 0.05). Two mini-grant community based participatory research projects proposed by participants were funded through competitive application. Most participants agreed that by working together, the people in their community could influence decisions that affected the community. All participants rated their satisfaction with the overall program as "very high" (76.2%, n = 16) or "high" (23.8%, n = 5).ConclusionThe evaluation of the MSCRFTP demonstrates that participants have the necessary knowledge to engage as research partners, and the pilot projects provided an opportunity for application of this objective to be realized. Overall, the MSCRFTP was an intervention that assisted community members in identifying their communities' strengths and weaknesses, interpret knowledge in a meaningful way, and create a self-reflective community of inquiry for change.
| S-EPMC5811515 | biostudies-literature
Project description:Primary Immune Regulatory Disorders (PIRD) are an expanding group of diseases caused by gene defects in several different immune pathways, such as regulatory T cell function. Patients with PIRD develop clinical manifestations associated with diminished and exaggerated immune responses. Management of these patients is complicated; oftentimes immunosuppressive therapies are insufficient, and patients may require hematopoietic cell transplant (HCT) for treatment. Analysis of HCT data in PIRD patients have previously focused on a single gene defect. This study surveyed transplanted patients with a phenotypic clinical picture consistent with PIRD treated in 33 Primary Immune Deficiency Treatment Consortium centers and European centers. Our data showed that PIRD patients often had immunodeficient and autoimmune features affecting multiple organ systems. Transplantation resulted in resolution of disease manifestations in more than half of the patients with an overall 5-years survival of 67%. This study, the first to encompass disorders across the PIRD spectrum, highlights the need for further research in PIRD management.
| S-EPMC7046837 | biostudies-literature
Project description:BackgroundThe purpose of this intervention was to investigate the feasibility, acceptability, and preliminary effectiveness of an online weight loss program, EMPOWER, in rural, underserved communities.MethodsAdults with a body mass index (BMI) ≥ 25 kg/m2 living in rural counties were recruited through collaboration with University of Illinois Extension. The intervention lasted 1 year including online educations sessions, nutrition and lifestyle coaching, and diet and weight monitoring via a novel web application, MealPlot. Feasibility was measured by enrollment attainment, participant retention, online education session completion, and completion of anthropometric and dietary measures. Acceptability was measured by survey using Likert scales of satisfaction for all program components. Anthropometric measurements, 24-h dietary records, and food frequency questionnaires (FFQs) were measures of program efficacy. Additionally, two interviews were collected for program feedback.ResultsEnrollment of 16 participants was attained, however due to higher than anticipated dropout (retention 62.5%, N = 10) at 3-months, 62.5% of the education sessions were completed and 75.0% of anthropometric and dietary measures. The average satisfaction rating for the comprehensive program was 4.2/5 with lowest satisfaction being the MealPlot web application 2.7/5 (N = 11). On average a clinically significant (≥5% baseline weight) weight loss of 6.2 ± 6.0% body weight or 5.7 ± 5.3 kg and improvements to protein and fiber intake at 12 months (N = 10) were observed.ConclusionsA novel online weight loss program showed adequate to strong feasibility and acceptability and preliminary results indicating efficacy among a pilot sample of rural residents. Future studies are required to investigate means of improving retention and reducing the burden on program collaborators.
| S-EPMC11456290 | biostudies-literature
Project description:IntroductionChildren with primary immunodeficiency disorders (PID) are more susceptible to developing viral infections and are at a substantially increased risk of developing paralytic poliomyelitis. Such children, if given oral polio vaccines tend to excrete poliovirus chronically that may lead to the propagation of highly divergent vaccine-derived poliovirus (VDPV). Consequently, they may act as a reservoir for the community by introducing an altered virus potentially imposing a risk to global polio eradication. However, the risks of chronic and prolonged excretion are not well characterised in the study context. This study seeks to establish a pilot surveillance system for successful identification and monitoring of VDPV excretion among children with PID. It will assess whether the Jeffrey Modell warning signs of PID can be used as an appropriate screening tool for PID in Pakistan.Methods and analysisIn this pilot surveillance, recruitment of PID cases is currently done at participating hospitals in Pakistan. Potential children are screened and tested against the Jeffrey Modell Foundation (JMF) warning signs for immunodeficiency and their stool is collected to test for poliovirus excretion. Cases excreting poliovirus are followed until the two consecutive negative stool samples are obtained over a period of 6 months. The data will be analysed to calculate hospital-based proportions of total Immunodeficiency-related vaccine-derived poliovirus (iVDPV) cases over a 2-year period and to determine the sensitivity and specificity of the JMF signs.Ethics and disseminationThis protocol was reviewed and approved by the WHO (WHO Reference-2018/811124-0), Aga Khan University (AKU ERC-2018-0380-1029) and National Bioethics Committee (Ref No. 4-87 NBC-308-Y2). The results will be published in an open access peer-reviewed scientific journal and presented to the iVDPV Working Group members, policy-makers, paediatric consultants and fellow researchers with the same domain interest. It may be presented in scientific conferences and seminars in the form of oral or poster presentations.
| S-EPMC8319991 | biostudies-literature
Project description:BackgroundPancreatojejunostomy (PJ) is one of the most difficult and challenging abdominal surgical procedures. There are no appropriate training systems available outside the operating room (OR). We developed a structured program for teaching PJ outside the OR. We describe its development and results of a pilot study.MethodsWe have created this structured program to help surgical residents and fellows acquire both didactic knowledge and technical skills to perform PJ. A manual was created to provide general knowledge about PJ and the specific PJ procedure used in our institution. Based on questionnaires completed by trainers and trainees, the procedure for PJ was divided into twelve steps and described in detail. After creating the manual, we developed organ models, needles and a frame box for simulation training. Three residents (PGY3-5) and three fellows (PGY6 or above) participated in a pilot study. Objective and subjective evaluations were performed.ResultsTrainees learn about PJ by reading the procedure manual, acquiring both general and specific knowledge. We conducted simulation training outside the OR using the training materials created for this system. They simulate the procedure with surgical instruments as both primary and assistant surgeon. In this pilot study, as objective assessments, the fellow-group took less time to complete one anastomosis (36 min vs 48 min) and had higher scores in the objective structured assessment of technical skill (average score: 4.1 vs 2.0) compared to the resident-group. As a subjective assessment, the confidence to perform a PJ anastomosis increased after simulation training (from 1.6 to 2.6). Participants considered that this structured teaching program is useful.ConclusionWe developed a structured program for teaching PJ. By implementing this program, learning opportunities for surgical residents and fellows can be increased as a complement to training in the OR.
| S-EPMC7908720 | biostudies-literature
Project description:BackgroundEating disorders are serious psychiatric illnesses that are often associated with poor quality of life and low long-term recovery rates. Peer mentor programs have been found to improve psychiatric symptoms and quality of life in other mental illnesses, and a small number of studies have suggested that eating disorder patients may benefit from such programs. The aim of this study is to assess the efficacy of a peer mentor program for individuals with eating disorders in terms of improving symptomatology and quality of life.MethodsUp to 30 individuals with a past history of an eating disorder will be recruited to mentor 30 individuals with a current eating disorder. Mentoring will involve 13 sessions (held approximately every 2 weeks), of up to 3 h each, over 6 months.DiscussionThis pilot proof-of-concept feasibility study will inform the efficacy of a peer mentoring program on improving eating disorder symptomatology and quality of life, and will inform future randomised controlled trials.Trial registrationAustralian and New Zealand Clinical Trials Registration Number: ACTRN12617001412325. The date of registration (retrospective): 05/10/2017.
| S-EPMC5934861 | biostudies-literature
Project description:POLA1 encodes the catalytic unit of DNA polymerase α, which together with the Primase complex launches the DNA replication process. While complete deficiency of this essential gene is presumed to be lethal, at least two conditions due to partial POLA1 deficiency have been described. The first genetic syndrome to be mapped to POLA1 was X-linked reticulate pigmentary disorder (XLPDR, MIM #301220), a rare syndrome characterized by skin hyperpigmentation, sterile multiorgan inflammation, recurrent infections, and distinct facial features. XLPDR has been shown to be accompanied by profound activation of type I interferon signaling, but unlike other interferonopathies, it is not associated with autoantibodies or classical autoimmunity. Rather, it is accompanied by marked Natural Killer (NK) cell dysfunction, which may explain the recurrent infections seen in this syndrome. To date, all XLPDR cases are caused by the same recurrent intronic mutation, which results in gene missplicing. Several hypomorphic mutations in POLA1, distinct from the XLPDR intronic mutation, have been recently reported and these mutations associate with a separate condition, van Esch-O'Driscoll syndrome (VEODS, MIM #301030). This condition results in growth retardation, microcephaly, hypogonadism, and in some cases, overlapping immunological features to those seen in XLPDR. This review summarizes our current understanding of the clinical manifestations of POLA1 gene mutations with an emphasis on its immunological consequences, as well as recent advances in understanding of its pathophysiologic basis and potential therapeutic options.
| S-EPMC7864891 | biostudies-literature
Project description:BACKGROUND: The Accreditation Council for Graduate Medical Education (ACGME) program requirements mandate "adequate supervision," of residents, but there is little guidance for sports medicine fellowship directors regarding the transition from direct to indirect supervision of fellows covering football games. OBJECTIVE: We sought to gather evidence of current supervision practices in the context of injury outcomes. METHODS: Fellows and program directors of ACGME-accredited sports medicine fellowship programs were invited to complete an online survey regarding their experience and current supervision practice at football games. Criteria for transition to autonomy and desired changes in supervision practice were elicited. Player safety was quantified by noting the number of field-side emergencies, whether an attending was present, and whether better outcomes might have resulted from the presence of an attending. RESULTS: A total of 80 fellows and 50 program directors completed the online survey. Direct supervision was lacking in about 50% of high school games and 20% of college games. A resulting cost in terms of player safety was estimated to apply to 5% of serious injuries by fellows' report but less than 0.5% by directors' report. Written criteria for transitioning from direct supervision to autonomy were the exception rather than the rule. The majority of fellows and directors expressed satisfaction with the current level of supervision, but 20% of fellows would prefer more supervision through postgame review. CONCLUSIONS: Football games covered by fellows are often not directly supervised. Absence of an attending affected the outcomes of 5% or less of serious injuries. Transition to autonomy does not usually require meeting written criteria. Fellows might benefit from additional off-site supervision.
| S-EPMC2951787 | biostudies-other
Project description:IntroductionThe American Cancer Society, Inc. (ACS) estimates that 37,940 Indiana residents were diagnosed with cancer in 2020, which remains the leading cause of death in the state. Across the cancer continuum, national goals have been established targeting recommended benchmarks for states in prevention, screening, treatment, and survivorship. Indiana consistently falls below most goals for each of these targeted categories.MethodsTo address these disparities, we implemented Project ECHO (Extension for Community Healthcare Outcomes) as a virtual telehealth educational platform targeted at local healthcare providers. ECHO programs utilize a novel tele-mentoring approach to the education of clinicians in a hub/spoke design. Sessions occurred twice monthly from September 2019 to September 2020 and consisted of a traditional didactic lecture and a case-based discussion led by participating providers.ResultsDuring the pilot year there were a total of 22 ECHO sessions with 140 different participants. On average, 15.5 spokes attended each session with increasing participation at the end of the year. Post-session surveys suggested generally favorable perception with 72% of respondents finding the quality "excellent."DiscussionGiven the increasing rate of recurrent participation toward the end of the pilot year in conjunction with the favorable survey responses following each session, it was felt that the program was overall successful and warranted continued implementation.ConclusionThe Project ECHO platform is a validated telehealth education platform that has the potential to impact cancer care at multiple points along the cancer continuum at the regional level.
| S-EPMC8704156 | biostudies-literature
Project description:The Primary Immune Deficiency Treatment Consortium (PIDTC) is a network of 33 centers in North America that study the treatment of rare and severe primary immunodeficiency diseases. Current protocols address the natural history of patients treated for severe combined immunodeficiency (SCID), Wiskott-Aldrich syndrome, and chronic granulomatous disease through retrospective, prospective, and cross-sectional studies. The PIDTC additionally seeks to encourage training of junior investigators, establish partnerships with European and other International colleagues, work with patient advocacy groups to promote community awareness, and conduct pilot demonstration projects. Future goals include the conduct of prospective treatment studies to determine optimal therapies for primary immunodeficiency diseases. To date, the PIDTC has funded 2 pilot projects: newborn screening for SCID in Navajo Native Americans and B-cell reconstitution in patients with SCID after hematopoietic stem cell transplantation. Ten junior investigators have received grant awards. The PIDTC Annual Scientific Workshop has brought together consortium members, outside speakers, patient advocacy groups, and young investigators and trainees to report progress of the protocols and discuss common interests and goals, including new scientific developments and future directions of clinical research. Here we report the progress of the PIDTC to date, highlights of the first 2 PIDTC workshops, and consideration of future consortium objectives.
| S-EPMC3960312 | biostudies-literature