scholarly journals 2484

2017 ◽  
Vol 1 (S1) ◽  
pp. 80-81
Author(s):  
Tilicia Mayo-Gamble ◽  
Velma McBride Murry ◽  
Michael R. DeBaun
Keyword(s):  
Rare Disease ◽  
Sickle Cell ◽  
Process Model ◽  
Basic Research ◽  
Standard Of Care ◽  
Healthcare Services ◽  
Valuable Insight ◽  
Patient Centered ◽  
Research Activities ◽  
Rural And Urban

OBJECTIVES/SPECIFIC AIMS: Despite the high prevalence of individuals diagnosed with sickle cell disease (SCD) in Tennessee, comprehensive care and education for patients with SCD is not as widely available as healthcare services for individuals managing other chronic illnesses. We aimed to engage SCD stakeholders in patient-centered outcomes research (PCOR) as a mechanism for advancing care and translational research for this rare disease population. METHODS/STUDY POPULATION: Through a partnership with the Sickle Cell Foundation of Tennessee, we implemented Community Health Ambassadors to systematically engage patient partners with SCD and their caregivers, aged 18–50 from rural and urban communities throughout Tennessee, in PCOR to establish a sustainable infrastructure, focused on connecting the SCD community through a service providing community-based organization to offer (1) information on how to connect with other families; and be informed about SCD community activities, or educational offerings; (2) training in basic research principals; and (3) opportunities to contribute to PCOR, including feedback on effective and practical ways for providing input on research efforts through patient centered input, comparing urban and rural area preferences. Community ambassadors utilized health fairs, clinic days at various hospitals and community centers, and social media to spread awareness of the project, in addition to boosting the recruitment process. RESULTS/ANTICIPATED RESULTS: A statewide SCD network was developed to offer social support and increase access to education, medical care, and engagement in research activities. Findings include: recruitment of 150 patients and 35 executive committee members (local physicians, community leaders, adults with SCD and parents of children with SCD). DISCUSSION/SIGNIFICANCE OF IMPACT: Most rural and urban families affected by SCD have no systematic way to engage in, or lend their expertise to, PCOR. A statewide network of patient partners, community stakeholders, researchers, and medical professionals will ultimately increase the standard of care for patients, and provide valuable insight for SCD research. The opportunity to create the underpinnings for coordinated patient-centered education for patients with SCD and their caregivers holds promise for developing a scalable PCOR process model for replication and implementation in other states and emulate this model with other rare disease populations.

scholarly journals Innovative Strategies to Facilitate Patient-Centered Research in Multiple Chronic Conditions

2021 ◽  
Vol 10 (10) ◽  
pp. 2112
Author(s):  
Tullika Garg ◽  
Courtney A. Polenick ◽  
Nancy Schoenborn ◽  
Jane Jih ◽  
Alexandra Hajduk ◽  
...  
Keyword(s):  
Chronic Conditions ◽  
Clinical Care ◽  
Intervention Development ◽  
Healthcare Services ◽  
Multiple Chronic Conditions ◽  
Patient Centered ◽  
Older Americans ◽  
Innovative Strategies ◽  
Department Of Health ◽  
Innovative Methods

Multiple chronic conditions (MCC) are one of today’s most pressing healthcare concerns, affecting 25% of all Americans and 75% of older Americans. Clinical care for individuals with MCC is often complex, condition-centric, and poorly coordinated across multiple specialties and healthcare services. There is an urgent need for innovative patient-centered research and intervention development to address the unique needs of the growing population of individuals with MCC. In this commentary, we describe innovative methods and strategies to conduct patient-centered MCC research guided by the goals and objectives in the Department of Health and Human Services MCC Strategic Framework. We describe methods to (1) increase the external validity of trials for individuals with MCC; (2) study MCC epidemiology; (3) engage clinicians, communities, and patients into MCC research; and (4) address health equity to eliminate disparities.

scholarly journals Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: a Spanish cross-sectional study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mercedes Guilabert ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
Healthcare Services ◽  
Paediatric Population ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Optimal Care ◽  
Cross Sectional ◽  
Patient Reported ◽  
Mean Time

Abstract Objective To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC [Instrumento para evaluar la Experiencia del Paciente Crónico] instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience). Results A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. 232 (88.9%) were adult patients and 29 (11.1%) caregivers of minor patients. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2–3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services. Conclusions There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.

scholarly journals Detecting Convergence Trends among EU Universities

Economies ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. 42
Author(s):  
Maria Adamakou ◽  
Dimitris Kallioras ◽  
George Petrakos
Keyword(s):  
Methodological Approach ◽  
Basic Research ◽  
Valuable Insight ◽  
Traditional Role ◽  
University Ranking ◽  
Convergence Clubs ◽  
Development Processes ◽  
The Impact ◽  
The Empirical Analysis ◽  
Insight Into

Universities are emerging growth determinants. This is so as, in addition to the fulfillment of their traditional role in teaching and (basic) research, universities, as aptly described within the helix framework, are expected to engage in regional development processes. The paper aims to detect trends of convergence among EU universities in terms of performance. To the best of our knowledge, this topic has not hitherto been examined. The empirical analysis of the paper covers the period 2014–2021, utilizes data obtained from URAP (University Ranking by Academic Performance), and employs the methodological approach of convergence clubs. The findings of the paper provide valuable insight into both theory and policy-making. We conclude that despite the unification of EU educational space, trends of divergence among EU universities are still present, and notable divisions still remain. Consequently, this indicates that the impact of EU universities on the formation of spatial disparities across EU space is not neutral.

scholarly journals Extra Health and Health-Related Costs of Living With Frailty Among Rural and Urban Elders in China

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 78-78
Author(s):  
Yalu Zhang ◽  
Ada Mui
Keyword(s):  
Chronic Diseases ◽  
Household Income ◽  
Statistical Significance ◽  
Healthcare Services ◽  
Standard Of Living ◽  
Medical Needs ◽  
Rural And Urban ◽  
Need Support ◽  
Health Related ◽  
Rural Elders

Abstract Growing attention has been focused on how to improve the affordability and accessibility of healthcare services, especially for elders (aged 55 and above) who have higher levels of medical needs. Following the standard of living approach, which assumes that people’s standard of living would be negatively affected if additional needs (i.e., healthcare) arise at a given level of household income, this secondary research examines elders’ extra health and health-related costs of having chronic diseases and disabilities in rural (n=5,509) and urban (n=3,225) areas of China. Bivariate analyses show there were no significant differences between rural and urban groups in terms of the prevalence of having one or more chronic diseases (56% vs. 58%) and at least one type of disability (15% vs. 13%). Multivariate analyses indicate that living with chronic diseases incurred more extra costs for rural elders than their urban peers, after controlling for individual and household characteristics. On average, rural elders who had at least three chronic medical conditions would spend 108.3% more on medical services than those who had no chronic disease; elders with at least two types of disabilities would spend 59.8% more than those with no disability. The extra health-related costs were boosted when people had at least one type of disability (63.6%), but this was not the case for those who had chronic diseases. Statistical significance was not found among urban elders in China regarding both health and health-related expenditures. The results suggest that rural elders need support to manage their chronic health conditions.

scholarly journals Vitamin D and Nonskeletal Complications among Egyptian Sickle Cell Disease Patients

2018 ◽  
Vol 2018 ◽  
pp. 1-7 ◽  
Author(s):  
Mona Hamdy ◽  
Niveen Salama ◽  
Ghada Maher ◽  
Amira Elrefaee
Keyword(s):  
Vitamin D ◽  
Sickle Cell Disease ◽  
Vitamin D Deficiency ◽  
Sickle Cell ◽  
Standard Of Care ◽  
Enzyme Linked Immunosorbent Assay ◽  
Cell Disease ◽  
P Values ◽  
Indirect Bilirubin ◽  
Deficient Group

Lower levels of vitamin D have been documented in many patients with sickle cell disease (SCD), but data are still inconclusive regarding the association between vitamin D deficiency (VDD) and the occurrence or the severity of various SCD complications. Our study aimed to detect the prevalence of vitamin D deficiency among Egyptian patients with SCD and to associate it with the clinical course of the disease. We measured the level of 25-hydroxy vitamin D in 140 children (age from 4.3 to 15.5years), 80 patients with SCD and 60 controls using enzyme-linked immunosorbent assay. Vitamin D was deficient in 60% of SCD compared to 26.7% of controls. Severe VDD was significantly higher in SCD patients than controls. Patients were divided into 2 groups; Normal group (32 patients) and Deficient group (48 patients). There were statistically significant differences between the 2 groups regarding their age, height percentile, the presence of clinical jaundice, and osseous changes (P values 0.043, 0.024, 0.001, and 0.015, respectively). Hemoglobin and hematocrit values were significantly lower in Deficient group (P values 0.022 and 0.004, respectively) while the levels of aspartate aminotransferase, lactate dehydrogenase, and total and indirect bilirubin were significantly higher in the same group (P values 0.006, 0.001, 0.038, and 0.016, respectively). The frequency of blood transfusions, hospitalization, and vasoocclusive crisis previous year as well as the history of bone fracture and recurrent infections proved to be significantly higher in Deficient group. These findings suggest that VDD may play a role in the pathogenesis of hemolysis and other complication of SCD. Vitamin D monitoring and supplementation in patients with SCD should be implemented as a standard of care to potentially improve health outcomes in these affected patients.

Business process model patterns: state-of-the-art, research classification and taxonomy

2019 ◽  
Vol 25 (5) ◽  
pp. 972-994 ◽  
Author(s):  
Michael Fellmann ◽  
Agnes Koschmider ◽  
Ralf Laue ◽  
Andreas Schoknecht ◽  
Arthur Vetter
Keyword(s):  
Business Process ◽  
Process Model ◽  
Pattern Language ◽  
Future Research ◽  
Business Process Model ◽  
Content Type ◽  
Research Activities ◽  
Starting Point ◽  
Research Classification

Purpose Patterns have proven to be useful for documenting general reusable solutions to a commonly occurring problem. In recent years, several different business process management (BPM)-related patterns have been published. Despite the large number of publications on this subject, there is no work that provides a comprehensive overview and categorization of the published business process model patterns. The purpose of this paper is to close this gap by providing a taxonomy of patterns as well as a classification of 89 research works. Design/methodology/approach The authors analyzed 280 research articles following a structured iterative procedure inspired by the method for taxonomy development from Nickerson et al. (2013). Using deductive and inductive reasoning processes embedded in concurrent as well as joint research activities, the authors created a taxonomy of patterns as well as a classification of 89 research works. Findings In general, the findings extend the current understanding of BPM patterns. The authors identify pattern categories that are highly populated with research works as well as categories that have received far less attention such as risk and security, the ecological perspective and process architecture. Further, the analysis shows that there is not yet an overarching pattern language for business process model patterns. The insights can be used as starting point for developing such a pattern language. Originality/value Up to now, no comprehensive pattern taxonomy and research classification exists. The taxonomy and classification are useful for searching pattern works which is also supported by an accompanying website complementing the work. In regard to future research and publications on patterns, the authors derive recommendations regarding the content and structure of pattern publications.

scholarly journals Sickle cell disease pain management and the medical home

Hematology ◽  
2013 ◽  
Vol 2013 (1) ◽  
pp. 433-438 ◽  
Author(s):  
Jean L. Raphael ◽  
Suzette O. Oyeku
Keyword(s):  
Pain Management ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Medical Home ◽  
Cost Effective ◽  
Cell Disease ◽  
Patient Centered ◽  
Centered Care ◽  
The Individual ◽  
Effective Models

Pain is the most common cause for hospitalization and acute morbidity in sickle cell disease (SCD). The consequences of SCD-related pain are substantial, affecting both the individual and the health care system. The emergence of the patient-centered medical home (PCMH) provides new opportunities to align efforts to improve SCD management with innovative and potentially cost-effective models of patient-centered care. The Department of Health and Human Services has designated SCD as a priority area with emphasis on creating PCMHs for affected patients. The question for patients, clinicians, scientists, and policy-makers is how the PCMH can be designed to address pain, the hallmark feature of SCD. This article provides a framework of pain management within the PCMH model. We present an overview of pain and pain management in SCD, gaps in pain management, and current care models used by patients and discuss core PCMH concepts and multidisciplinary team–based PCMH care strategies for SCD pain management.

scholarly journals An Analysis of Methodologies That Can Be Used to Validate if a Perioperative Surgical Home Improves the Patient-centeredness, Evidence-based Practice, Quality, Safety, and Value of Patient Care

2013 ◽  
Vol 119 (6) ◽  
pp. 1261-1274 ◽  
Author(s):  
Thomas R. Vetter ◽  
Nataliya V. Ivankova ◽  
Lee A. Goeddel ◽  
Gerald McGwin ◽  
Jean-Francois Pittet
Keyword(s):  
Perioperative Care ◽  
Healthcare Delivery ◽  
Standard Of Care ◽  
The United States ◽  
Surgical Patients ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Perioperative Surgical Home ◽  
Future Demands ◽  
Evidenced Based

Abstract Approximately 80 million inpatient and outpatient surgeries are performed annually in the United States. Widely variable and fragmented perioperative care exposes these surgical patients to lapses in expected standard of care, increases the chance for operational mistakes and accidents, results in unnecessary and potentially detrimental care, needlessly drives up costs, and adversely affects the patient healthcare experience. The American Society of Anesthesiologists and other stakeholders have proposed a more comprehensive model of perioperative care, the Perioperative Surgical Home (PSH), to improve current care of surgical patients and to meet the future demands of increased volume, quality standards, and patient-centered care. To justify implementation of this new healthcare delivery model to surgical colleagues, administrators, and patients and maintain the integrity of evidenced-based practice, the nascent PSH model must be rigorously evaluated. This special article proposes comparative effectiveness research aims or objectives and an optimal study design for the novel PSH model.

Does Integrated Medical Insurance System (IMIS) Alleviate the Difficulty of Using Cross-Region Health Care for the Migrant Parents in China

2021 ◽  
Author(s):  
Chao Ma ◽  
Shutong Huo ◽  
Hao Chen
Keyword(s):  
Health Care ◽  
Medical Insurance ◽  
Healthcare Services ◽  
Care Utilization ◽  
Inpatient Service ◽  
Medical Expense ◽  
Registration System ◽  
Rural And Urban ◽  
Urbanization In China ◽  
Migrant Parents

Abstract Background: A large number of internal immigrants in the process of urbanization in China is Migrant Parents, the aging group who move to urban area involuntarily to support their family. They are more vulnerable economically and physically than the younger migrants. However, the fragmentation of rural and urban health insurance schemes divided by “hukou” household registration system limit migrant’s access to healthcare services in their resident location. Some provinces have started to consolidate the Urban Resident Basic Medical Insurance and the New Rural Cooperative Medical Scheme as one Integrated Medical Insurance Schemes (IMIS) to reduce the disparity between different schemes and increase the health care utilization of migrants. Results: Using China Migrants Dynamic Survey, we used OLS for regression in models. We found that the migrant parents who are covered by the IMIS are more likely to choose inpatient service and to seek medical treatment in the migrant destination, by improving the convenience of medical expense reimbursement and relieving the economic pressure. Conclusions: The potential mechanisms of our results could be that IMIS alleviates the difficulty of seeking medical care in migrant destinations by improving the convenience of medical expense reimbursement and relieving the economic constrain.

Providing Patient Centered Care for Adolescents with Chronic Conditions

2016 ◽  
Vol 6 (1) ◽  
pp. 22-29
Author(s):  
Nabeel Al-Yateem
Keyword(s):  
Young Adults ◽  
Healthcare Professionals ◽  
Transition Process ◽  
Healthcare Services ◽  
Adolescents And Young Adults ◽  
Study Phase ◽  
Patient Centered ◽  
Centered Care ◽  
Group Interviews ◽  
Depth Interviews

Background: It is well acknowledged that clear, structured healthcare services that are mutually developed between the patient and the healthcare professionals are likely to be of high quality, desirable, and effective. Such service should address the complexity of the illness-health experience in terms of the factors that influence it as well as the physical and psychosocial consequences on the patient. The required focus should be on treating the patient rather than just treating the disease.Objectives: To develop relevant and feasible care guidelines that may inform more competent and patient centered services for adolescents and young adults with chronic conditions.Methodology: A sequential exploratory mixed method design guided this study. The first qualitative phase employed in-depth interviews to explore the experiences of adolescents and young adults about the health services they were receiving. This was followed by focus group interviews with healthcare professionals to discuss the patients’ reported needs and to suggest interventions that would address them. Finally, a second quantitative phase was carried out through a survey to explore the views of a larger sample of service stakeholders about the relevance and feasibility of the suggested guidelines for clinical practice.Results: The in-depth interviews revealed four main themes, as follows: a current amorphous service, sharing knowledge, the need to be at the center of service, and easing the transition process to adulthood. The second study phase yielded 32 proposed guidelines that may contribute to more competent and patient centered health care.

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