scholarly journals The PID Principles of Care: Where Are We Now? A Global Status Report Based on the PID Life Index

2021 ◽  
Vol 12 ◽  
Author(s):  
Julia Nordin ◽  
Leire Solís ◽  
Johan Prévot ◽  
Nizar Mahlaoui ◽  
Helen Chapel ◽  
...  
Keyword(s):  
Treatment Options ◽  
Scientific Progress ◽  
Diagnostic Tools ◽  
Status Report ◽  
Health Coverage ◽  
Hematopoietic Stem ◽  
Life Index ◽  
Patient Organisations ◽  
The World ◽  
Global Status

A global gold standard framework for primary immunodeficiency (PID) care, structured around six principles, was published in 2014. To measure the implementation status of these principles IPOPI developed the PID Life Index in 2020, an interactive tool aggregating national PID data. This development was combined with a revision of the principles to consider advances in the field of health and science as well as political developments since 2014. The revision resulted in the following six principles: PID diagnosis, treatments, universal health coverage, specialised centres, national patient organisations and registries for PIDs. A questionnaire corresponding to these principles was sent out to IPOPI’s national member organisations and to countries in which IPOPI had medical contacts, and data was gathered from 60 countries. The data demonstrates that, regardless of global scientific progress on PIDs with a growing number of diagnostic tools and better treatment options becoming available, the accessibility and affordability of these remains uneven throughout the world. It is not only visible between regions, but also between countries within the same region. One of the most urgent needs is medical education. In countries without immunologists, patients with PID suffer the risk of remaining undiagnosed or misdiagnosed, resulting in health implications or even death. Many countries also lack the infrastructure needed to carry out more advanced diagnostic tests and perform treatments such as hematopoietic stem cell transplantation or gene therapy. The incapacity to secure appropriate diagnosis and treatments affects the PID environment negatively in these countries. Availability and affordability also remain key issues, as diagnosis and treatments require coverage/reimbursement to ensure that patients with PID can access them in practice, not only in theory. This is still not the case in many countries of the world according to the PID Life Index. Although some countries do perform better than others, to date no country has fully implemented the PID principles of care, confirming the long way ahead to ensure an optimal environment for patients with PID in every country.

scholarly journals The Impact of Alcoholic Beverages on Human Health

Nutrients ◽  
2021 ◽  
Vol 13 (12) ◽  
pp. 4417
Author(s):  
Peter Anderson
Keyword(s):  
Human Health ◽  
Alcoholic Beverages ◽  
World Health ◽  
Status Report ◽  
The World ◽  
Global Status ◽  
The Impact

As summarized in the World Health Organization’s latest Global Status Report on Alcohol, the pleasure of alcohol is indicated by the fact that, worldwide, just over two-fifths of the population aged 15+ years drink alcohol; 2 [...]

scholarly journals Helmet Use among Two Wheeler Female Riders

2019 ◽  
Vol 08 (01) ◽  
pp. 034-038
Author(s):  
Rizwan Khan ◽  
Nadia Krishnan ◽  
Manju Dhandapani ◽  
Sivashanmugam Dhandapani
Keyword(s):  
Driving Under The Influence ◽  
Hospital Environment ◽  
World Health ◽  
Status Report ◽  
Hospital Workers ◽  
Helmet Use ◽  
The World ◽  
Global Status ◽  
Health Organization ◽  
Two Wheeler

Abstract Introduction The frequency of traffic collisions in India is among the highest in the world with more than 135,000 traffic collision-related deaths occurring every year. The “Global Status Report on Road Safety” listed by the World Health Organization identified the major causes of injury as driving over the speed limit, driving under the influence, and not using helmets and seat belts. Women face unique challenges after traumatic brain injury, due to differential laws and their enforcement. Objectives To assess the use of helmet among female hospital workers (nurses, hospital attendants, sanitary attendants, and security guards) and their attitude toward helmet wearing. Methods Purposive sampling was done among female two-wheeler-riding hospital workers. A questionnaire was developed to study the use of helmet and an attitude Likert scale for assessing attitude toward wearing helmet. Data were collected, coded, and analyzed using SPSS software version 21. Results Of the total 89 women enrolled, 46.4% were mostly pillion riders, and 33% were mostly drivers. Only 19% were using helmet consistently, despite 93% owning it. Eighty-eight percent of the regular users were younger than 25 years, while 80% of the non-users were above 25 years. Even among regular drivers, 40% never wore helmet. Eighty-two percent of the non-users were merely casual despite knowing about its advantages. Conclusion Helmet use is very poor among women (both drivers and pillion riders), despite working in hospital environment and owning helmet. Stricter enforcement of helmet law is needed, as education and knowledge per-se may not instil helmet use.

scholarly journals The PID Life Index: an interactive tool to measure the status of the PID healthcare environment in any given country

2022 ◽  
Vol 17 (1) ◽  
Author(s):  
Leire Solís ◽  
Julia Nordin ◽  
Johan Prevot ◽  
Nizar Mahlaoui ◽  
Silvia Sánchez-Ramón ◽  
...  
Keyword(s):  
Primary Immunodeficiencies ◽  
Patient Organisation ◽  
Health Coverage ◽  
Life Index ◽  
Patient Organisations ◽  
Medical Institutions ◽  
The Status ◽  
National Patient ◽  
Interactive Map

Abstract Background The “Primary Immunodeficiencies (PIDs) principles of care” were published in 2014 as the gold standard for care of patients with PIDs, setting a common goal for stakeholders to ensure that patients with PID have access to appropriate care and good quality of life. Since then, IPOPI (the International Patient Organisation for Primary Immunodeficiencies), has been working with national PID patient organisations as well as collaborating with scientific and medical institutions and experts to bring these principles closer to the day-to-day life of individuals with PIDs. Method The six PID Principles of Care were revised to consider advances in the field, as well as political developments that had occurred after their initial publication in 2014. Based on this revision the list was updated, and a new principle was added. The six established principles were: diagnosis, treatment, universal health coverage, specialised centres, national patient organisations and registries. Each principle was structured and measured through a series of criteria, and was given the same weight, as they have been considered to all be equally important. Specific weights were attributed to the criteria depending on their relevance and importance to quantify the principle. The index was translated into a survey for data collection: initially involving data from selected countries for a pilot, followed by integration of data from IPOPI’s national member organisations and key countries. Results The PID Life Index was developed in 2020 to assess the status of the PID environment and the implementation of the 6 principles worldwide. The Index allows for benchmarking countries either according to a set of principles and criteria or based on the user’s preferences. This can be displayed in an interactive map or through a data visualisation system. Conclusion The PID Life Index has been developed successfully and has potential to become an important source of information for PID stakeholders, to increase awareness and information as well as support advocacy initiatives on PIDs nationally, regionally or globally.

scholarly journals The PID Life Index: An Interactive Tool To Measure The Status of The PID Healthcare Environment in Any Given Country

2021 ◽  
Author(s):  
Leire Solis ◽  
Julia Nordin ◽  
Johan Prévot ◽  
Nizar Mahlaoui ◽  
Silvia Sánchez-Ramón ◽  
...  
Keyword(s):  
Specific Weight ◽  
Primary Immunodeficiencies ◽  
Patient Organisation ◽  
Health Coverage ◽  
Life Index ◽  
Patient Organisations ◽  
Medical Institutions ◽  
The Status ◽  
National Patient ◽  
Interactive Map

Abstract Background: The “Primary Immunodeficiencies (PIDs) principles of care” were published in 2014 as the gold standard for care of patients with PIDs. Since then, IPOPI, the International Patient Organisation for Primary Immunodeficiencies, has been working with national PID patient organisations as well as collaborating with scientific and medical institutions and experts to bring these principles closer to the day-to-day life of individuals with PIDs. Results: The PID Life Index was developed in 2020 to assess the status of the PID environment and the implementation of the 6 principles worldwide. The Index allows for benchmarking countries according to a set of principles and criteria or based on the user’s preferences. This can be displayed in an interactive map or through a data visualisation system. The 6 PID Principles of Care were reviewed to consider advances in the field of health and science, as well as to include political developments that had occurred since their initial publication in 2014. This resulted in the following 6 principles: PID diagnosis, treatments, universal health coverage, specialised centres, national patient organisations and registries for PIDs. All principles are given the same weight while the criteria have a specific weight. PID Life Index also includes documentation on each country, on PID specialised centres taking care of patients with PIDs (children or adults), on immunoglobulin replacement therapies registered in each country as well as a glossary of the terminology used. Conclusion: The PID Life Index aims at becoming a resource for patients with PIDs and their representatives, healthcare professionals, decision-makers and other relevant stakeholders interested in learning more about the concrete situation of patients with PIDs. With this tool IPOPI wants to increase awareness and information as well as support advocacy initiatives on PIDs nationally, regionally or globally.

Treatment Options in COVID-19: The Role of Bioavailable Antiviral Ribonucleoside Analog on NHC in vitro

2020 ◽  
Author(s):  
Lara Bittmann
Keyword(s):  
World Health Organization ◽  
Clinical Picture ◽  
Treatment Options ◽  
World Health ◽  
Wuhan City ◽  
The World ◽  
Novel Coronavirus ◽  
Health Organization

On December 31, 2019, WHO was informed of cases of pneumonia of unknown cause in Wuhan City, China. A novel coronavirus was identified as the cause by Chinese authorities on January 7, 2020 and was provisionally named "2019-nCoV". This new Coronavirus causes a clinical picture which has received now the name COVID-19. The virus has spread subsequently worldwide and was explained on the 11th of March, 2020 by the World Health Organization to the pandemic.

scholarly journals Morphological Characteristics, Classifications and Difficulties in the Use of Diagnostic Criteria for Serrated Lesions of the Large Intestine

2021 ◽  
Author(s):  
Cesar de Souza Bastos Junior ◽  
Vera Lucia Nunes Pannain ◽  
Adriana Caroli-Bottino
Keyword(s):  
Diagnostic Criteria ◽  
Morphological Characteristics ◽  
World Health ◽  
Diagnostic Tools ◽  
Serrated Adenoma ◽  
The Past ◽  
The World ◽  
Serrated Lesions ◽  
Health Organization

Abstract Introduction Colorectal carcinoma (CRC) is the most common gastrointestinal neoplasm in the world, accounting for 15% of cancer-related deaths. This condition is related to different molecular pathways, among them the recently described serrated pathway, whose characteristic entities, serrated lesions, have undergone important changes in their names and diagnostic criteria in the past thirty years. The multiplicity of denominations and criteria over the last years may be responsible for the low interobserver concordance (IOC) described in the literature. Objectives The present study aims to describe the evolution in classification of serrated lesions, based on the last three publications of the World Health Organization (WHO) and the reproducibility of these criteria by pathologists, based on the evaluation of the IOC. Methods A search was conducted in the PubMed, ResearchGate and Portal Capes databases, with the following terms: sessile serrated lesion; serrated lesions; serrated adenoma; interobserver concordance; and reproducibility. Articles published since 1990 were researched. Results and Discussion The classification of serrated lesions in the past thirty years showed different denominations and diagnostic criteria. The reproducibility and IOC of these criteria in the literature, based on the kappa coefficient, varied in most studies, from very poor to moderate. Conclusions Interobserver concordance and the reproducibility of microscopic criteria may represent a limitation for the diagnosis and appropriate management of these lesions. It is necessary to investigate diagnostic tools to improve the performance of the pathologist's evaluation, for better concordance, and, consequently, adequate diagnosis and treatment.

scholarly journals Fructose and Mannose in Inborn Errors of Metabolism and Cancer

Metabolites ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. 479
Author(s):  
Elizabeth L. Lieu ◽  
Neil Kelekar ◽  
Pratibha Bhalla ◽  
Jiyeon Kim
Keyword(s):  
Metabolic Disease ◽  
Inborn Errors Of Metabolism ◽  
Metabolic Diseases ◽  
Treatment Options ◽  
Biochemical Properties ◽  
Biological Molecules ◽  
Diagnostic Tools ◽  
Inborn Errors ◽  
Mannose Metabolism

History suggests that tasteful properties of sugar have been domesticated as far back as 8000 BCE. With origins in New Guinea, the cultivation of sugar quickly spread over centuries of conquest and trade. The product, which quickly integrated into common foods and onto kitchen tables, is sucrose, which is made up of glucose and fructose dimers. While sugar is commonly associated with flavor, there is a myriad of biochemical properties that explain how sugars as biological molecules function in physiological contexts. Substantial research and reviews have been done on the role of glucose in disease. This review aims to describe the role of its isomers, fructose and mannose, in the context of inborn errors of metabolism and other metabolic diseases, such as cancer. While structurally similar, fructose and mannose give rise to very differing biochemical properties and understanding these differences will guide the development of more effective therapies for metabolic disease. We will discuss pathophysiology linked to perturbations in fructose and mannose metabolism, diagnostic tools, and treatment options of the diseases.

scholarly journals CENTRAL NERVOUS SYSTEM INVOLVEMENT IN ADULT ACUTE LYMPHOBLASTIC LEUKEMIA: DIAGNOSTIC TOOLS, PROPHYLAXIS AND THERAPY

2014 ◽  
Vol 6 (1) ◽  
pp. e2014075 ◽  
Author(s):  
Maria Ilaria Del Principe ◽  
Luca Maurillo ◽  
Francesco Buccisano ◽  
Giuseppe Sconocchia ◽  
Mariagiovanna Cefalo ◽  
...  
Keyword(s):  
Central Nervous System ◽  
Nervous System ◽  
Acute Lymphoblastic Leukemia ◽  
Lymphoblastic Leukemia ◽  
Intrathecal Injection ◽  
False Negative ◽  
Diagnostic Tools ◽  
Positive Finding ◽  
Cns Involvement ◽  
Hematopoietic Stem

In adult patients with acute lymphoblastic leukemia (ALL), Central Nervous System (CNS) involvement is associated with a very poor prognosis. The diagnostic assessment of this condition relies on the use of neuroradiology, conventional cytology (CC) and flow cytometry (FCM). Among these approaches, which is the gold standard it is still a matter of debate. Neuroradiology and CC have a limited sensitivity with a higher rate of false negative results. FCM demonstrated a superior sensitivity over CC, particularly when low levels of CNS infiltrating cells are present. Although prospective studies of large series of patients are still awaited, a positive finding by FCM appears to anticipate an adverse outcome even if CC shows no infiltration. Current strategies for adult ALL CNS-directed prophylaxis or therapy involve systemic and intrathecal chemotherapy and radiation therapy. Actually, early and frequent intrathecal injection of cytostatic combined with systemic chemotherapy is the most effective strategy to reduce the frequency of CNS involvement. In patients with CNS overt ALL, at diagnosis or upon relapse, allogenic hematopoietic stem cell transplantation might be considered. This review will discuss risk factors, diagnostic techniques for identification of CNS infiltration and modalities of prophylaxis and therapy to manage it. 

scholarly journals How I treat EBV lymphoproliferation

Blood ◽  
2009 ◽  
Vol 114 (19) ◽  
pp. 4002-4008 ◽  
Author(s):  
Helen E. Heslop
Keyword(s):  
B Cells ◽  
Cytotoxic T Lymphocyte ◽  
Cytotoxic T Cells ◽  
Treatment Options ◽  
Solid Organ Transplantation ◽  
Solid Organ ◽  
Hematopoietic Stem ◽  
Serial Measurement ◽  
Barr Virus ◽  
Epstein Barr

Abstract Epstein-Barr virus (EBV)–associated B-cell lymphoproliferation is a life-threatening complication after hematopoietic stem cell or solid organ transplantation resulting from outgrowth of EBV-infected B cells that would normally be controlled by EBV-cytotoxic T cells. During the past decade, early detection strategies, such as serial measurement of EBV-DNA load in peripheral blood samples, have helped to identify high-risk patients and to diagnose early lymphoproliferation. Treatment options include manipulation of the balance between outgrowing EBV-infected B cells and the EBV cytotoxic T lymphocyte response and targeting the B cells with monoclonal antibodies or chemotherapy. Major challenges remain for defining indications for preemptive therapies and integrating novel and conventional therapies.

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