scholarly journals Expert Perspectives on Hereditary Angioedema: Key Areas for Advancements in Care across the Patient Journey

2016 ◽  
Vol 7 (3) ◽  
pp. ar.2016.7.0165 ◽  
Author(s):  
Aleena Banerji ◽  
Murat Baş ◽  
Jonathan A. Bernstein ◽  
Isabelle Boccon-Gibod ◽  
Maria Bova ◽  
...  
Keyword(s):  
Health Care Providers ◽  
Hereditary Angioedema ◽  
Delayed Diagnosis ◽  
Scientific Data ◽  
Online Information ◽  
Care Providers ◽  
C1 Inhibitor Deficiency ◽  
Patient Journey ◽  
Diagnosis And Management ◽  
Awareness Campaigns

Background Published literature documents the substantial burden of hereditary angioedema (HAE) with C1 inhibitor deficiency on the quality of life and work productivity of patients. However, despite advances in the field and the availability of guidelines to advise health care providers (HCP) on the diagnosis and management of HAE, there are still many challenges to overcome. For example, delayed diagnosis and misdiagnosis are common, and treatment practices vary worldwide. Objective An international expert panel was convened to consider opportunities for improvements that would benefit patients with HAE. Methods Based on professional and personal experiences, the experts developed schematics to describe the journey of patients through the following stages: (1) onset of symptoms and initial evaluation; (2) referral/diagnosis; and (3) management of HAE. More importantly, the panel identified key areas in which it was possible to optimize the support provided to patients and HCPs along this journey. Results Overall, this approach highlighted the need for wider dissemination of algorithms and scientific data to more effectively educate HCPs from multiple disciplines and the need for more research to inform appropriate treatment decisions. Furthermore, HAE awareness campaigns, accurate online information, and referral to patient advocacy groups were all considered helpful approaches to support patients. Conclusion More detailed and widespread information on the diagnosis and management of HAE is needed and may lead to advancements in care throughout the journey of the patient with HAE.

scholarly journals Common variable immunodeficiency disorder associated with bronchiectasis: a case report

2021 ◽  
Vol 8 (3) ◽  
pp. 565
Author(s):  
Mohammad Zahirul Islam Khan ◽  
Kamrul Laila ◽  
Mohammed Mahbubul Islam ◽  
Mohammad Imnul Islam ◽  
Shahana Akhter Rahman
Keyword(s):  
Health Care Providers ◽  
Common Variable Immunodeficiency ◽  
Delayed Diagnosis ◽  
Gene Mutations ◽  
Growth Failure ◽  
Recurrent Infections ◽  
Care Providers ◽  
Immunodeficiency Disorder ◽  
Specific Antibody Production ◽  
Common Variable

Common variable immunodeficiency disorder (CVID) is the commonest type of primary immunodeficiency disorders (PIDs) characterized by hypogammaglobulinemia, defective specific antibody production and increased susceptibility of recurrent infections. Autoimmunity, neoplasm and lymphoproliferative disorders are usually associated with CVID. In most cases, the cause is unknown, but multiple gene mutations (10%) may be associated with CVID. Here, we report an eight years old girl with CVID presented with recurrent infections, growth failure, generalized lymphadenopathy and hepatosplenomegaly. Chest examination and radiological findings of this girl were consistent with bronchiectasis. Lack of awareness among health care providers is the reason for delayed diagnosis of several years for this girl. Therefore, it is essential to raise awareness regarding PID patients among the physicians to improve the quality of life.  

scholarly journals Crossing Knowledge Boundaries: Health Care Providers’ Perceptions and Experiences of What is Important to Achieve More Person-Centered Patient Pathways For Older People

2021 ◽  
Author(s):  
Cecilie Olsen ◽  
Astrid Bergland ◽  
Asta Bye ◽  
Jonas Debesay ◽  
Anne Langaas
Keyword(s):  
Health Care ◽  
Quality Improvement ◽  
Older People ◽  
Health Care Providers ◽  
Transitional Care ◽  
Care Providers ◽  
Quality Improvement Collaborative ◽  
Patient Journey ◽  
Patient Pathways

Abstract Background: Improving the transitional care of older people, especially hospital-to-home transitions, is a salient concern worldwide. Older people’s patient pathways may be unpredictable and complex, posing significant challenges for health care providers (HCPs). In particular, appropriate follow-up in primary care after discharge is key. Current research in the field endorses person-centered care as crucial to improving the patient pathways of older people. The aim of this study was to explore HCPs’ perceptions and experiences of what is important to achieve more person-centered patient pathways for older people.Methods: This was a qualitative study. We performed individual semistructured interviews with 20 HCPs and three key persons who participated in a Norwegian quality improvement collaborative. In addition, participant observation of 22 meetings in the quality improvement collaborative was performed. Results: A thematic analysis resulted in five themes: 1) Finding common ground through the mapping of the patient journey; 2) the importance of understanding the whole patient pathway; 3) the significance of getting to know the older patient; 4) the key role of home care providers in the patient pathways of older people; and 5) ambiguity toward checklists and practice implementation. Conclusion: To understand the findings, it proved useful to see them in light of knowledge sharing and boundary crossing, which are central concepts in the literature on transitional care. HCPs in the collaborative shared and coproduced new knowledge of the patient pathways of older people based on a patient journey perspective. Mapping the patient journey and asking, “What matters to you?” facilitated the crossing of knowledge boundaries between the HCPs; hence, a new and more holistic view of the patient pathways of older people in the current context emerged. The centrality of getting to know the patient and the special role of providers working in home care services was a central finding. The study adds to existing knowledge by suggesting that the achievement of person-centered patient pathways for older people does not only depend on the crossing of knowledge boundaries among HCPs, but also between HCPs and older persons.

Clinical and Autopsy Analysis of Delayed Diagnosis and Missed Injuries in Trauma Patients

2006 ◽  
Vol 72 (2) ◽  
pp. 174-179
Author(s):  
Om P. Sharma ◽  
Diane M. Scala-Barnett ◽  
Michael F. Oswanski ◽  
Amy Aton ◽  
Shekhar S. Raj
Keyword(s):  
Health Care Providers ◽  
Negative Impact ◽  
Delayed Diagnosis ◽  
P Value ◽  
Care Providers ◽  
Missed Injuries ◽  
Impact On Survival ◽  
Group 2 ◽  
Trauma Deaths ◽  
Group 1

Delayed diagnosis of injury (DDI) during hospitalization and missed injuries (MI) on autopsy in trauma deaths result in untoward outcomes. Autopsy is an effective educational tool for health care providers to evaluate trauma care. A retrospective study of trauma registry patients and coroner's records was categorized into groups 1 (alive patients) and 2 (trauma deaths) and analyzed. DDI incidence was similar in group 1 (1.8%) and group 2 (1.9%). Autopsy analysis (163 patients) yielded 139 MI in 94 patients (57.6%), <3 per cent of MI had negative impact on survival. Bony injuries comprised 68 per cent of DDI and 19 per cent of MI. Group 1 DDI patients were sicker with higher injury severity score (ISS: 16.07) than their cohorts (ISS 7.13, P value <0.05). These patients had higher Glasgow Coma Scale (14.41) and lower ISS (16.07) as compared with group 2 MI patients (ISS: 33.49, GCS: 6.45, P value <0.05). Autopsy rate was 99.5 per cent in trauma deaths, 57 per cent for nontrauma deaths, and 79 per cent for all deaths. Less than 3 per cent of MI had negative impact on survival. Routine ongoing patient assessment with pertinent diagnostic workup is essential in reducing DDI. Trauma autopsies reveal MI, which aid performance improvement (PI).

Delayed diagnosis of hereditary angioedema with C1‐inhibitor deficiency in iranian children and adolescents

2019 ◽  
Vol 30 (3) ◽  
pp. 395-398 ◽  
Author(s):  
Maryam Ayazi ◽  
Mohammad Reza Fazlollahi ◽  
Iraj Mohammadzadeh ◽  
Abbas Fayezi ◽  
Mohammad Nabavi ◽  
...  
Keyword(s):  
Children And Adolescents ◽  
Hereditary Angioedema ◽  
Delayed Diagnosis ◽  
C1 Inhibitor ◽  
C1 Inhibitor Deficiency ◽  
Iranian Children

Consumer Behavior in Online Risky Purchase Decisions

2018 ◽  
Vol 8 (2) ◽  
pp. 1-26 ◽  
Author(s):  
Kenneth David Strang
Keyword(s):  
Consumer Behavior ◽  
Health Care Providers ◽  
Information Sources ◽  
Financial Institution ◽  
Online Marketing ◽  
Online Information ◽  
Purchase Decisions ◽  
Care Providers ◽  
Online Social Media ◽  
Trust Beliefs

There is very little research about how consumers of different races trust online marketing information from businesses or government when making expensive purchase decisions such as cancer treatment medicine. In this article, a large cross-cultural sample was surveyed to evaluate trust belief levels for common online information sources when making risky purchase decisions. Trust belief levels of online information sources were significantly different across ethnicity and gender when making risky decision. Females across all ethnicities held higher trust beliefs for online information sources, and Asian females in particular had the highest trust beliefs for online data from library research to health care providers. Trust belief levels were lower for online social media and bank/financial institution online information sources for risky purchase decisions. These findings can be used by leaders, political authorities, and consumer behavior marketing managers to segment consumers by demographic characteristics.

Upper Extremity Surgery in Tetraplegia and the Online Information Void

Hand ◽  
2019 ◽  
pp. 155894471987883
Author(s):  
Shuting Zhong ◽  
Gabriella E. Reed ◽  
Loree K. Kalliainen
Keyword(s):  
Upper Extremity ◽  
Health Care Providers ◽  
Key Words And Phrases ◽  
Online Information ◽  
Care Providers ◽  
Online Content ◽  
Nerve Transfers ◽  
Extremity Function ◽  
Surgical Options ◽  
Upper Extremity Function

Background: People with tetraplegia lack awareness of, and subsequently underutilize, reconstructive surgery to improve upper extremity function. This is a topic of international discussion. To bridge the information gap, proposed mandates encourage providers to discuss surgical options with all tetraplegic patients. Outside of the clinical setting, little is known about information available to patients and caregivers—particularly online. The purpose of this study is to evaluate online content for surgical options for improved upper extremity function for people with tetraplegia. Methods: A sample of online content was generated using common search engines and 2 categories of key words and phrases, general and specific. Articles on the first 2 search pages were evaluated for content and audience. Results: A total of 76 different search results appeared on the first 2 pages using 8 unique search phrases. Of articles generated from general phrases, only 5% mentioned tendon or nerve transfers in tetraplegia. When more specific key search phrases were used, the number of lay articles increased to 71%. Conclusions: Based on initial results, general online information on the management of tetraplegia largely excludes discussions of upper limb reconstruction and the well-known benefits. Unless patients, their caregivers, and nonsurgical health care providers have baseline knowledge of tendon and/or nerve transfers, they are unlikely to obtain de novo awareness of surgical options with self-initiated searches. Thus, the challenge and opportunity is to revise the online dialogue to include upper extremity surgery as a fundamental tenet of tetraplegia care.

The Role of the Biotechnology Industry in Addressing Health Inequities in Africa: Strengthening the Entire Health Care Value Chain

2021 ◽  
Vol 26 (4) ◽  
Author(s):  
Stephen M. Sammut
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Value Chain ◽  
Communicable Disease ◽  
Diagnostic Tools ◽  
Health Coverage ◽  
Care Providers ◽  
African Countries ◽  
Patient Journey ◽  
Health Care Value

There are many misconceptions surrounding health care in Africa, a continent of 54 sovereign countries and a population exceeding 1.2 billion souls which is growing at the fastest rate in the world. Enormous diversity has direct impact on the notion, practices, and availability of health care on the continent. There are no satisfactory generalizations about the state of health and the strength of health care systems for the continent as a whole. Indeed, differences between neighboring countries are enormous, as well as among population groups within countries. There is a significant mix of public, private, and faith-based health care providers. In most African countries, 60 percent of health providers fall into the latter two categories (IFC, 2008). Moreover, movements towards national and private risk pooling for payment of health care are underway in only a few countries, but virtually all modern African constitutions declare health care as a human right and aspire to some form of Universal Health Coverage (UHC). Despite these principles, Africans endure a dual burden of communicable and non-communicable disease. In the face of these challenges, Africans are confronted with out-of-pocket payment for health services – when it is available at all – and challenging logistics for accessing and maintaining consistency of care. The patient journey for Africans is a winding path, often exacerbated by an additional reliance on the importation of talent, pharmaceuticals and vaccines, medical and diagnostic tools, and digital support of the health systems. The health care value chain in Africa is incomplete. Each of Providers, Payers and Producers need further development. When any of these is weak or missing, there cannot be a sustainable health system. The issue, therefore, is not scientific or clinical competence; it is capacity and the necessity to promote a comprehensive and integrated health care ecosystem – including the Producer segment. To address the Producer link, more direct engagement by the global biopharmaceutical industry in assisting and investing in the advancement of indigenous laboratory and clinical development, product production and distribution, and the advancement of human capital necessary to achieve health care sovereignty for the continent is necessary. There is all the more reason to do so as humanity enters the age of genomic and precision medicine. There is a pathway for African health care to leapfrog as it has done in telecommunications.

Preclinical Lectures in Medical Formation: Professionalism, Ethics and Responsibility

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 118-118
Author(s):  
Cristian Cezar Login ◽  
◽  
Simona Clichici ◽  
◽  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Medical Training ◽  
Teaching Experience ◽  
Scientific Data ◽  
Professional Values ◽  
Easy Access ◽  
Care Providers ◽  
Ethical Attitudes ◽  
Starting Point

"Future doctors are the result of the present-day medical education and they bear the professional and attitudinal imprint of their mentors and instructors. The academic interaction between students and professors represents a key element in the scientific and professional training of future health care providers. Preclinical disciplines represent the foundation of the medical training system, on which the student will develop and integrate clinical skills. Therefore, preclinical topics have to offer accurate and updated information, working paradigms, and approaches to the development of professional values and ethical attitudes. Taking as starting point the teaching experience of the authors, we focused on the analysis of the interaction between three key concepts – professionalism, ethics and responsibility – concerning both the instructor and the student. These interrelated concepts will be approached from the viewpoint of all participants, instructors and students, in the contemporary context of the enormous volume of ever-changing scientific information and of the easy access to it. In order to select accurate data needed today and equally oriented towards future, information should always be filtered. The instructor is responsible not only to provide students with scientific data but also to stimulate and to develop flexibility, openness and critical thinking, while respecting ethical values. Through the offered scientific content, approaches, professional values and ethical attitudes, instructors transmit to the students a model of integrity in profession, ethics and responsibility, which will have consequences on the way they will choose to practice health care and medical research professions. "

scholarly journals Reaching Perinatal Women Online: TheHealthy You, Healthy BabyWebsite and App

2014 ◽  
Vol 2014 ◽  
pp. 1-9 ◽  
Author(s):  
Lydia Hearn ◽  
Margaret Miller ◽  
Leanne Lester
Keyword(s):  
Health Care Providers ◽  
Healthy Lifestyle ◽  
Online Resources ◽  
Online Information ◽  
Care Providers ◽  
Emotional Wellbeing ◽  
Close Link ◽  
Online Resource ◽  
Service Staff ◽  
Perinatal Women

Overwhelming evidence reveals the close link between unwarranted weight gain among childbearing women and childhood adiposity. Yet current barriers limit the capacity of perinatal health care providers (PHCPs) to offer healthy lifestyle counselling. In response, today’s Internet savvy women are turning to online resources to access health information, with the potential of revolutionising health services by enabling PHCPs to guide women to appropriate online resources. This paper presents the findings of a project designed to develop an online resource to promote healthy lifestyles during the perinatal period. The methodology involved focus groups and interviews with perinatal women and PHCPs to determine what online information was needed, in what form, and how best it should be presented. The outcome was the development of the Healthy You, Healthy Baby website and smartphone app. This clinically-endorsed, interactive online resource provides perinatal women with a personalised tool to track their weight, diet, physical activity, emotional wellbeing, and sleep patterns based on the developmental stage of their child with links to quality-assured information. One year since the launch of the online resource, data indicates it provides a low-cost intervention delivered across most geographic and socioeconomic strata without additional demands on health service staff.

scholarly journals Professionalism in a Digital Age: Opportunities and Considerations for Using Social Media in Health Care

2015 ◽  
Vol 95 (3) ◽  
pp. 406-414 ◽  
Author(s):  
Kendra Gagnon ◽  
Carla Sabus
Keyword(s):  
Health Care ◽  
Social Media ◽  
Health Care Providers ◽  
Media Use ◽  
Online Communication ◽  
Policy Implications ◽  
Online Information ◽  
Care Providers ◽  
Social Media Use ◽  
Remarkable Change

Since the beginning of the millennium, there has been a remarkable change in how people access and share information. Much of this information is user-generated content found on social media sites. As digital technologies and social media continue to expand, health care providers must adapt their professional communication to meet the expectations and needs of consumers. This adaptation may include communication on social media sites. However, many health care providers express concerns that professional social media use, particularly interactions with patients, is ethically problematic. Social media engagement does not create ethical dissonance if best practices are observed and online communication adheres to terms of service, professional standards, and organizational policy. A well-executed social media presence provides health care providers, including physical therapists, the opportunity—and perhaps a professional obligation—to use social media sites to share or create credible health care information, filling a consumer void for high-quality online information on fitness, wellness, and rehabilitation. This perspective article provides a broad review of the emergence of social media in society and health care, explores policy implications of organizational adoption of health care social media, and proposes individual opportunities and guidelines for social media use by the physical therapy professional.

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