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.

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.

HRCA Quality of Life Index

1986 ◽  
Author(s):  
John N. Morris ◽  
Samy Suissa ◽  
Sylvia Sherwood ◽  
Susan M. Wright ◽  
David Greer
Keyword(s):  
Quality Of Life ◽  
Life Index ◽  
Quality Of Life Index

Strategic Role of Zakat in Multidimensional Quality of Life in Sijunjung, Indonesia

2018 ◽  
Vol 15 (1) ◽  
pp. 55-72
Author(s):  
Herlin Hamimi ◽  
Abdul Ghafar Ismail ◽  
Muhammad Hasbi Zaenal
Keyword(s):  
Quality Of Life ◽  
Positive Impact ◽  
Wealth Distribution ◽  
Absolute Poverty ◽  
Before And After ◽  
The Status ◽  
Being There ◽  
The Impact

Zakat is one of the five pillars of Islam which has a function of faith, social and economic functions. Muslims who can pay zakat are required to give at least 2.5 per cent of their wealth. The problem of poverty prevalent in disadvantaged regions because of the difficulty of access to information and communication led to a gap that is so high in wealth and resources. The instrument of zakat provides a paradigm in the achievement of equitable wealth distribution and healthy circulation. Zakat potentially offers a better life and improves the quality of human being. There is a human quality improvement not only in economic terms but also in spiritual terms such as improving religiousity. This study aims to examine the role of zakat to alleviate humanitarian issues in disadvantaged regions such as Sijunjung, one of zakat beneficiaries and impoverished areas in Indonesia. The researcher attempted a Cibest method to capture the impact of zakat beneficiaries before and after becoming a member of Zakat Community Development (ZCD) Program in material and spiritual value. The overall analysis shows that zakat has a positive impact on disadvantaged regions development and enhance the quality of life of the community. There is an improvement in the average of mustahik household incomes after becoming a member of ZCD Program. Cibest model demonstrates that material, spiritual, and absolute poverty index decreased by 10, 5, and 6 per cent. Meanwhile, the welfare index is increased by 21 per cent. These findings have significant implications for developing the quality of life in disadvantaged regions in Sijunjung. Therefore, zakat is one of the instruments to change the status of disadvantaged areas to be equivalent to other areas.

The study of Iranian children and adolescents’ physical activity: a systematic review and meta-analysis

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Adel Alizadeh ◽  
Reza Negarandeh ◽  
Fahimehe Bagheri Amiri ◽  
Zahra Yazdani
Keyword(s):  
Physical Activity ◽  
Children And Adolescents ◽  
Meta Analysis ◽  
World Health ◽  
Chi Square ◽  
The Status ◽  
Newcastle Ottawa Scale ◽  
Health Organization ◽  
Iranian Children

Abstract Objectives This systematic and meta-analysis review was conducted to determine the status of Iranian children and adolescents’ physical activity. Content All the related articles which were published in the major databases, including Pubmed, Scopus, Web of Science, Embase, Magiran, SID from the beginning of 2010 to the end of 2019, were reviewed by researchers. The Newcastle-Ottawa scale was also used to evaluate the quality of articles. Moreover, I 2 index and chi-square were used to assess the heterogeneity between the results. Summary 490 articles were found as a result of the search in the selected international and local databases, where finally, 10 articles were included into the meta-analysis after the elimination of the duplicated articles and applying inclusion and exclusion criteria. The results indicated that 29.5% of the girls were considered active according to WHO criteria (16.1–42.8: 95% CI) and also 20.5% of the boys (7.3–33.7: 95% CI). Outlook Overall, this study’s findings showed that a large percentage of Iranian children and adolescents do not achieve the level of physical activity recommended by the World Health Organization. This can lead to undesirable consequences for this group of population that is considered as the human capital of any country; consequently, it seems necessary to take basic measures at the micro and macro levels in order to reduce such problems in the society.

Refluxsymptomatik – kein Unterschied in Ausprägung und Schweregrad bei Patienten mit und ohne funktionell bewiesene gastroösophageale Refluxerkrankung

2021 ◽  
Author(s):  
Michael Grechenig ◽  
Ricarda Gruber ◽  
Michael Weitzendorfer ◽  
Burkhard H. A. von Rahden ◽  
Bernhard Widmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Index ◽  
Demeester Score ◽  
Gastroösophageale Refluxerkrankung ◽  
Quality Of Life Index

Zusammenfassung Hintergrund Patienten mit gastroösophagealem Reflux (GERD) leiden oft sehr unter der Symptomatik. Im Rahmen unserer Studie galt es deshalb herauszufinden, ob sich die Lebensqualität und die Symptome bei Patienten mit objektiv nachgewiesener GERD von Patienten ohne funktionell bewiesenes Korrelat unterscheidet. Material und Methoden Eingeschlossen wurden alle Patienten mit typischer Refluxsymptomatik, die 2017 an unserer Abteilung für Allgemein-, Viszeral- und Thoraxchirurgie hinsichtlich des Vorliegens einer GERD abgeklärt wurden. Alle Patienten erhielten eine hochauflösende Manometrie, 24-h-Impedanz-pH-Metrie und eine Gastroskopie. Die Lebensqualität wurde mittels Quality of Life Index (GIQLI) und die gastrointestinale Symptomatik mittels einer Symptomcheckliste (SCL) evaluiert. Mittels SCL wurde die Schwere und Intensität von 14 verschiedenen Symptomen eruiert. Basierend auf den Resultaten der 24-h-pH-Impedanzmessung wurden die Patienten in 2 Gruppen eingeteilt – Patienten mit gastroösophagealer Refluxerkrankung und Patienten mit rein funktioneller Symptomatik ohne organisches Korrelat. Diese Gruppen wurden miteinander verglichen. Ergebnisse Ein vollständiger Datensatz war bei 162 Patienten verfügbar, wovon 86 Patienten (52,2%) objektiv an Reflux erkrankt waren (DeMeester-Mittelwert: 37,85; SD ± 29,11) und 76 Patienten (46,1%) einen unauffälligen DeMeester-Score (Mittelwert: 7,01; SD ± 4,09) aufwiesen. Zwischen diesen beiden Gruppen konnte kein signifikanter Unterschied in der Lebensqualität gefunden werden (Mittelwert GIQLI von GERD-Patienten: 94,81; SD ± 22,40; Mittelwert GIQLI von Patienten mit rein funktionellen Symptomen: 95,26; SD ± 20,33; p = 0,988). Außerdem konnte kein signifikanter Unterschied in der Symptomwahrnehmung der Patienten gefunden werden (Mittelwert SCL-Score von Refluxpatienten: 46,97; SD ± 29,23; Mittelwert SCL-Score bei Patienten mit rein funktioneller Symptomatik 48,03; SD ± 29,17; p = 0,827). Schlussfolgerung Patienten mit funktionellen Refluxbeschwerden unterscheiden sich hinsichtlich des Leidensdrucks nicht von Patienten mit objektiv bewiesener Refluxerkrankung. Eine Differenzierung zwischen gastroösophagealer Refluxerkrankung und funktionellen Refluxsymptomen ist nur mittels Funktionsdiagnostik möglich.

Answers and Questions: Evans-Pritchard On Nuer Religion

1983 ◽  
Vol 14 (3) ◽  
pp. 167-186 ◽  
Author(s):  
John W. Burton
Keyword(s):  
Catholic Church ◽  
Logical Consistency ◽  
Anthropological Study ◽  
The Status ◽  
The Many ◽  
The Catholic Church

AbstractIf my discernment of the thought that underlies his study of Nuer religion is not entirely misconstrued, then one can assert a logical consistency between Collingwood's methodology for history and Evans-Pritchard's for ethnography. It is worthwhile, in that light, to consider the fact that "at one time Evans-Pritchard contemplated writing Collingwood's biography" (Beidelman 1974:559). One commentator, (Kuper 1980:118) typifies this methodology as "postwar idealism" and suggests that the major works he published in the later decades of his presence at Oxford demonstrate the "sterility" of his methodology and theory. Still others have hinted that his entry into the Catholic Church was later reflected in his depiction of Nuer religous life. These are remarkable assertions, when one takes the time to reflect on the many ways in which his own approach and writings have so profoundly influenced the direction of anthropological enquiry in his own country and abroad. The fact is, one can no longer write ethnography in lieu of a solid understanding of the historical circumstances which have resulted in the contemporary 'ethnographic present'. At the same time, practitioners of the discipline have addressed from almost every angle the proposition that all ethnography is indeed a good part confession-that we write what we are able to see. That is precisely the quality of the work that will guarantee the status of Nuer religion as a classic. The methods of history and anthropology can only become more similar. Anyone who holds an absence of definition or presumed repugnance toward theory as criticisms of his contributions, has truly lost the forest for the trees. It is all the more remarkable that his methodological and theoretical advances in the anthropological study of religion are to be found not in his answers, but in the questions he raised.10

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