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

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.

Life quality as an indicator of sustainable development: international statistical research

The purpose of the article is to substantiate the methodology for determining the European quality of life index. The theoretical and methodological basis of research is the ideas of the interdependence of life quality and sustainable development. To achieve the desired goal, the following research methods were used: analysis and synthesis (for determining theoretical and practical aspects of ensuring the life quality); statistical (for determining standardized indicators and a European Quality of Life Index for Sweden and Ukraine); abstract-logical (for theoretical summarization and conclusion). As a result, the authors created the European Quality of Life Index based on the comparison of the characteristics of international life quality assessment systems (calculation principle, number and composition of indicators, number of countries covered for calculation), as well as systematization of research by Ukrainian and foreign authors. Therefore, the authors selected twelve main indicators. The indicators are divided into two groups: stimulants (prosperity index, basic human needs index, welfare bases, availability of nutrition and basic health care, GDP per capita, population, global competitiveness index, personal security, access to basic knowledge, ecosystem status) and disincentive (government debt, unemployment). To determine the “European life quality index”, the authors used the formula for calculating the arithmetic mean, as all selected indicators can be considered equivalent as a result of standardization by the method of “minimum- maximum”. In addition, for in-depth analysis, the authors calculated the growth rates of indicators, as well as coefficients of variation. The authors made calculations based on data of 2013–2019 for two countries, namely Sweden and Ukraine. Sweden occupies a much better position in achieving the Sustainable Development Goals, so studying the impact of life quality on sustainable development in this country will suggest ways to achieve the chosen strategic priorities for Ukraine.

Level of physical activity and quality of life associated with health in Paraguay adults

Studies have shown that the performance of scheduled physical activity is positively related to a higher quality of life related to health. The objective of this study was to evaluate the level of physical activity according to the quality of life in the adult population of Paraguay in the period from November to December 2020. A descriptive, analytical cross-sectional design study, which included 211 adults of both sexes. Sociodemographic data such as age, sex and origin were collected, as well as data on physical activity (IPAQ/METS questionnaire) and quality of life (EuroQol-5D questionnaire). The predominant sex was female (89%), 53.5% resided in Gran Asunción and the average age was 34.6±10.6. The level of physical activity was mostly moderate (36.5%). The quality of life index was 0.67±0.15 and the perception of health was 79.12±18.35. Within the dimensions of quality of life, it was observed that 23% had moderate pain or discomfort and that 33% had moderate depression or anxiety. Significant differences were found between the level of physical activity and the quality of life index and the perception of health. The level of physical activity is a determinant of health-related quality of life, the greater the intensity of physical activity, the better the quality and perception of health indices in adults.

CALIDAD DE VIDA, PÉRDIDA PONDERAL Y EVOLUCIÓN DE LAS COMORBILIDADES. ESTUDIO COMPARATIVO DE GASTRECTOMIA VERTICAL VS BYPASS GÁSTRICO. RESULTADOS PRELIMINARES.

Objetivo: Comparar los resultados obtenidos en calidad de vida, pérdida ponderal y resolución de comorbilidades al año, en pacientes con obesidad mórbida intervenidos de Gastrectomía vertical laparoscópica (GVL) o Bypass gástrico en Y de Roux laparoscópico (BGYRL) en nuestro centro.Material y Métodos: Estudio observacional de una base de datos prospectiva. Las variables del estudio fueron IMC pre y postoperatorio, porcentaje de exceso de IMC perdido (PEIMCP), puntuación obtenida en los cuestionarios Gastrointestinal Quality of Life Index (GIQLI) y Bariatric Analysis and Reporting Outcomes System (BAROS) y la resolución de las comorbilidades.Resultados: De 60 pacientes: 37 fueron intervenidos de GVL y 23 de BGYRL. El IMC postoperatorio al año fue 29,9±4 Kg/m2 en BGYRL y 31,3±5 Kg/m2 en GVL. El PEIMCP fue de 74,5±19,2 % (BGYRL) y de 67,5±23,1 % (GVL). Con BAROS, se obtuvieron resultados buenos o superiores en el 87% (BGYRL) y en 83,8% (GVL). Con GIQLI se obtuvo una puntuación media de 108,3±19 (BGYRL) y 109,8±18,3 (GVL).No se observaron diferencias estadísticamente significativas entre ambos grupos en ninguna de las variables previas. En cuanto a la evolución de las comorbilidades, 50% de BGYRL y 53,8% de GVL presentaron resolución de todas las comorbilidades.Conclusiones: Ambas técnicas son eficaces en cuanto al PEIMCP, a la calidad de vida y al control de comorbilidades al año de la intervención. El BGYRL presenta mejores resultados en PEIMCP y BAROS, y la GVL presenta mejor puntación global y especifica de síntomas digestivos con GIQLI, sin ser diferencias estadísticamente significativas.

Calidad del entorno urbano y percepción de seguridad de las mujeres. Comparación de dos barrios de Cuenca, Ecuador

Most cities have been planned and built based on a universal subject: a male, healthy, paid, and middle-aged worker. As a result, cities have become an environment that makes social inequalities visible as they hinder the daily lives of the most vulnerable groups. Among these groups are women. In this context, this research looks to present the results of a study that aimed at determining the influence of the quality of the urban environment on the perception of safety for women in two neighborhoods, with different quality of life indices, in the intermediate city of Cuenca, Ecuador. The case studies were the Rio Sol neighborhood, whose quality of life index is one of the highest in the city, and Ciudadela Los Eucaliptos, which, despite being only 500m from the previous one, has a medium-low quality of life index. Methodologically, 3 tools were applied: e-MAPS, to determine the urban quality of the two neighborhoods; an adaptation of the Urban Diagnosis with a Gender Perspective (DUG, in Spanish), to measure the safety perception of women; and non-participant observation. The results showed there are differences in the urban environment quality index between the two neighborhoods, but that these are not directly related to the perception of safety. Non-participant observation suggests that there are other factors that make up neighborhood life, that affect women's perception of safety.

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

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.

Effect of Intensive Voice Therapy in a Patient With Multiple System Atrophy

Introduction: Multiple System Atrophy (MSA) is a degenerative neurogenic disorder characterized by multiple symptoms affecting the movements and autonomic nervous system. It reduces the function of various types of nerve cells in the brain and spinal cord. MSA causes some movement disorders such as dysarthria that is one of the most common symptoms in these patients. The first neurological sign that sometimes progresses is the complete inability to produce speech. This study aimed to evaluate the effect of an intensive voice therapy based on the principles of Lee Silverman Voice Therapy (LSVT) on improving acoustic features, intelligibility, and quality of life index of the patients with MSA. Materials and Methods: The patient was a 57-year-old woman with MSA disorder. Acoustic assessments of voice, intelligibility, and voice handicap index were performed before and after the treatment program according to LSVT principles. Results: Acoustic values such as intensity, frequency, and harmonic to noise ratio increased, and jitter and shimmer parameters decreased. Amount of perception of intelligibility increased. A significant decrease in the scores of the quality of life index related to voice handicap was observed. Conclusion: After treatment by intensive voice therapy, the acoustic assessment revealed improvement in all voice parameters. The perceptual assessment showed improved intelligibility and increased the patient’s quality of life. Intensive voice therapy based on LSVT principles effectively improves the acoustic features, which subsequently cause intelligibility to be more comprehensible. It generally improves verbal communication, which has a positive effect on the patient’s quality of life.