scholarly journals The Scenario of Myelofibrosis in Brazil in the View of a Panel of Experts: Challenges and Proposals

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 5851-5851
Author(s):  
Laura Maria Fogliatto ◽  
Cristiana Solza ◽  
Alexandre Gustavo Apa ◽  
Gustavo HR Magalhaes ◽  
Marcia Torresan Delamain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Stratification ◽  
Healthcare System ◽  
Expert Panel ◽  
Public And Private ◽  
Public System ◽  
The Public ◽  
Risk Of Death ◽  
The Impact

Introduction: Myelofibrosis (MF) is a rare and progressive myeloproliferative neoplasm (MPN), with increased risk of death due to disease complications and progression. The only curative therapy, bone marrow transplantation, is rarely feasible due to patients' age and comorbidities. Genetic study for prognostication and JAK inhibitors drugs are not available for all patients. Thus, patients with MF, especially those with poor prognosis (int-2 and high-risk IPSS), present decreased quality of life and survival. In Brazil, there is a lack of information regarding the epidemiology and management of the disease. Aims and methods: An expert panel was conducted in June 2019 with seven hematologists from different centers to identify limitations to MF care in Brazil and address pertinent recommendations. The experts received the questions in advance, conducted a literature review, and then discussed results and proposals for MF management in Brazil. Results: Diagnosis of MF, including hematologic, morphologic, and molecular findings, is challenging. In Brazil, patients are often diagnosed in advanced phases of MF what may suggest a late referral for specialized centers. The specialists concluded that awareness about the clinical findings of MF requires attention. An effort also needs to be made regarding morphological diagnosis according to the WHO revised criteria for MPN differential diagnosis. Although the mutational profile is essential for diagnosis and risk stratification, in Brazil, most of the centers have no access to driver mutations tests. The risk stratification relies on clinical scores such as IPSS or DIPSS, which leads to a lower identification of patients with a higher risk of disease that should be considered for transplantation. Regarding the quality of life, there is a sense of low perception about symptomatic severity of patients and physicians. Symptomatic scores, not yet available in Portuguese, are not applied routinely: patients have difficulties in understanding the questions without supervision. Finally, even though the Brazilian public healthcare system is based on the principles of universal coverage, the integrality of care and equity, most patients have limited access to drugs that improve symptoms and survival, like the JAK1/2 inhibitor ruxolitinib. Availability of medications is greater in the private system. However, there is a mandatory list of drugs approved by the insurance companies and updated every two years. Thus, new drugs are not readily available even in this setting. Of note, the majority of the Brazilian population is covered by the public system, while the private system covers 24% of the entire population. Therefore, disparities in health care between public and private systems can affect MF assistance. Based on these findings, the expert panel made the following suggestions: 1) A Brazilian registry, with a representative coverage of the national territory, to better understand the MF patient journey. 2) In order to improve diagnosis, investment in hematopathologist training and molecular testing for JAK2, CALR, and MLP mutations should be encouraged. 3) New prognostic classifications, such as MIPSS70+ version 2.0, that combine genetic and clinical variables, reinforce the need for adopting molecular tests as routine risk assessment. 4) Urgent need to develop a specific instrument to assess the impact of symptoms on the quality of life. Therefore, translation and validation of MPN-SAF TSS have been recently accomplished and will be used by MF reference centers when published. 5) Lack of equity in access to treatment options between public and private system was a consensus among experts. Measures that could address this issue include the establishment of MPN reference centers according to geographic distribution and centralization of the drugs purchasing system. A recently elaborated guideline endorsed by the Brazilian Society of Hematology is being used to circumvent the lack of a national protocol. In conclusion, the identification of limiting factors for MF management leads us to propose recommendations for the Brazilian healthcare system in an attempt to improve patient care. Urgent actions should be taken to improve the unmet needs for these patients, especially in the public system where diagnostic, prognostic, and therapeutic approaches deserve special attention. Disclosures Solza: Novartis: Honoraria. Apa:Novartis: Honoraria. Magalhaes:Novartis: Honoraria. Delamain:Novartis: Honoraria. Tavares:Novartis: Honoraria. Figueiredo-Pontes:Novartis: Honoraria.

The war against the homeless: Frank Jordan, broken windows, and anti-homeless politics in San Francisco

2019 ◽  
pp. 63-81
Author(s):  
Sean Parson
Keyword(s):  
Quality Of Life ◽  
Public Space ◽  
San Francisco ◽  
Broken Windows ◽  
The Public ◽  
Matrix Quality ◽  
Physical Spaces ◽  
The Impact ◽  
The City

Chapter 4 discusses Mayor Frank Jordan’s (1992–1995) revanchist Matrix Quality of Life Program, which sought to enforce a broken-windows policing system in San Francisco. The impact of the policy was felt largely by the visible homeless in downtown San Francisco, who were regularly harassed and arrested by the police and forced out of the city. Because quality-of-life policing desires to sanitize the public space of disruptive and asocial behaviour, the public meals of Food Not Bombs near City Hall resisted the city’s attempt to criminalize homelessness. This chapter argues that the city attempted to construct the homeless as anti-citizens and exclude them from the political and physical spaces of the city.

scholarly journals Políticas e instrumentos normativos. Estrategias ambientales enfocadas hacia un ordenamiento basado en la participación

2014 ◽  
Vol 1 ◽  
pp. 63-70
Author(s):  
Hector Enrique Guzmán Luján
Keyword(s):  
Quality Of Life ◽  
Constitutional Law ◽  
Sustainable Consumption ◽  
Public And Private ◽  
The Public ◽  
Healthy Environment ◽  
Calidad De Vida ◽  
Environmental Matter ◽  
Environmental Strategies

Resumen: Día a día la opinión pública contempla cómo Colombia, país mega diverso y dotado de gran riqueza en biodiversidad, va disminuyendo cualitativa y cuantitativamente sus recursos, afectando no solamente la calidad de vida en nuestras principales ciudades, sino la posibilidad de utilizar esa riqueza racionalmente como motor de desarrollo. Este artículo plantea como objetivo, una reflexión sobre la necesidad y pertinencia de replantear las estrategias ambientales utilizadas en la actualidad, y pregunta si realmente éstas impiden el paulatino deterioro de los recursos naturales, y si efectivamente garantizan el derecho constitucional del artículo 79, denominado derecho a gozar de un medio ambiente sano. A nivel metodológico, este trabajo surge de una revisión documental, y plantea como discusión la reflexión sobre estrategias ambientales en el ámbito nacional e internacional para afrontar la problemática ambiental en el sector productivo. Como conclusión destaca que en Colombia, a pesar de contar con múltiples instrumentos coercitivos en materia ambiental, éstas no se constituyen en una solución de fondo a las problemáticas que atacan, es necesaria una política en la materia, que pueda crear herramientas de mercado, acuerdos de autogestión y así fortalecer las relaciones entre lo público y privado. ___Palabras clave: Estrategias Ambientales, Biodiversidad, Producción y Consumo Sostenible. ___Abstract: Day after day the public opinion contemplates how Colombia, diverse country and gifted of great wealth in biodiversity, is diminishing qualitatively and quantitatively his resources, affecting not only the quality of life in our principal cities, but the possibility of using this wealth rationally as engine of development. This article raises as aim, a reflection on the need and relevancy of restating the environmental strategies used at present and asks, if really these prevent the gradual deterioration of the natural resources, and if really they guarantee the constitutional law of the article 79, named right to enjoy a healthy environment. To methodological level, this work arises from a documentary review, and raises as discussion the reflection on environmental strategies in the national and international area to confront the environmental problematics in the productive sector. As conclusion emphasizes that in Colombia, in spite of possessing multiple coercive instruments in environmental matter, these are not constituted in a solution of bottom to the problematic ones that they attack, a politics is necessary in the matter, which could create tools of market, agreements of automanagement and this way strengthen the relations between the public and private thing. ___Keywords: Environmental strategies, biodiversity, production and sustainable consumption. ___Recibido febrero 28 de 2014 / Aceptado abril 29 de 2014

scholarly journals Relationship between Mindfulness and Quality of Life in Early Adulthood during the COVID-19 Pandemic

2021 ◽  
Vol 2 ◽  
pp. 13-16
Author(s):  
Marchelina Febe
Keyword(s):  
Quality Of Life ◽  
Quantitative Research ◽  
Early Adulthood ◽  
Primary Data ◽  
The Public ◽  
Corona Virus ◽  
Life Itself ◽  
Almost All ◽  
The Impact

This study aims to see whether awareness impacts the quality of life in early adulthood, especially during the Covid 19 pandemic. This research was conducted because Indonesia is currently experiencing the Corona Virus, better known as Covid 19, which is known to be known. This pandemic has a carom effect on many aspects. The public has started to feel the impact of the Corona Virus more than recently. Many people feel bored, cannot be productive, and even feel sad because of this situation. So that began to be done various ways to overcome this effect so as not to spread more widely. One of them is mindfulness, which is expected to affect how a person thinks and later will impact the quality of one’s life. The quality of life itself is very influential in a person’s life because it is related/covers almost all aspects of life, starting from emotional, social, and even physical in one’s life. If the quality of life is good, it cannot make someone feel prosperous and impact happiness, creativity, productivity, etc. Therefore, researchers want to see whether one’s awareness can affect aspects of the quality of life with this pandemic. This quantitative research uses a questionnaire as the primary data technique and uses SPSS ver.26 for data processing. The results showed that mindfulness has a relationship or can affect a person’s quality of life, especially individuals in early adulthood.

scholarly journals Implementation of a Public Lymphoma Clinic in a Private Hospital in Brazil: Challenges and Impact of Delayed Diagnosis in Patients with Diffuse Large B Cell Lymphoma

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 13-14
Author(s):  
Guilherme Fleury Perini ◽  
Larissa LC Teixeira ◽  
Carolina Feres ◽  
Mariana Nassif Kerbauy ◽  
Leonardo Javier Arcuri ◽  
...  
Keyword(s):  
B Cell ◽  
Private Hospital ◽  
Cell Lymphoma ◽  
Delayed Diagnosis ◽  
B Cell Lymphoma ◽  
Public And Private ◽  
Treatment Protocols ◽  
Public System ◽  
The Public ◽  
The Impact

Introduction: Since 1990, Brazil has implemented a unified public health care, but access to specialized care remains a major challenge, especially due to delays in diagnosis and access to specialized centers. In order to help cancer care access, Hospital Israelita Albert Einstein, a private hospital, has implemented a public cancer clinic in Sao Paulo, only 11km apart. In an unprecedent situation in Sao Paulo, both public and private hospitals share most of the facilities, including laboratory, pathology, radiology, radiotherapy, pharmacy and medical team. Moreover, treatment protocols are the same and most drugs are also available in the public system. With 1 year of operation of the public clinic, we aim to analyze the outcome of patients with diffuse large B-cell lymphoma (DLBCL) compared with historical data from the private hospital. Moreover, since patients are only admitted after a confirmed cancer diagnosis, we aim to look at the impact of delayed diagnosis in the outcome of the patients. Method: This is a retrospective study comparing the clinical features, treatment and outcome of patients with DLBCL treated in the public system with historical data from the private system. In order to minimize the impact of treatment protocols, only patients treated between January 2016 and February 2020 were used for historical comparison. All biopsies were reviewed by the same hemepathologist. Time to treatment initiation (TTI) time was defined by the number of days between biopsy and the first day of treatment cycle. Time from symptom onset to medical consultation (TSTC) was also calculated. Survival rates were estimated by Kaplan-Meier and differences assessed by log-rank test. Results: In one year of operation, 23 patients with DLBCL were treated in the public clinic (PC) and were compared with 41 patients from the private hospital (PH), for a total of 64 patients. Clinical features were similar between PC and PH, and for all patients, median age was 61 years (range: 27-91), 76% with PS of 0-1, 78% with advanced stage and 45% with B-symptoms. Median R-IPI was 3 for both cohorts and approximately 50% of patients in both cohorts presented with R-IPI of 3 to 5. Interestingly, a difference in the cell-of-origin (COO) was observed between both cohorts, with a higher number of germinal center B-cell lymphoma in the PC (82% vs 52%, respectively, p=0.0041). TSTC was significantly higher in the PC compared to PH (160 vs 30 respectively, p<0.001), and it was mostly impacted by the delay in obtaining the biopsy result. Moreover, TTI was higher in the PC compared with PH (7 vs 39, respectively, p<0.0001) and was most impacted by the delay in receiving biopsy slides for review. With a median follow up of 18 months, 1 year-EFS was 76% and 1 year-OS was 86%for all cohort, with no statistical difference between public and private hospitals (p=0.40 and 0.20, respectively). Conclusion: In our cohort of patients from public and private settings treated equally by the same resources, there was no difference in the outcome of patients. Despite TSTC and TTI were higher for patients from the public setting, no difference in survival was observed, and this may be partially explained by an enriched cohort of GCB DLBCL in the public system. The extremely low number of ABC DLBCL (4/23) is uncommon and suspicious for mortality of these patients before access to specialized care. Figure Disclosures Perini: Janssen, Takeda: Honoraria; AbbVie, Janssen: Speakers Bureau.

scholarly journals Responsabilidad educativa para un compromiso ciudadano crítico

2018 ◽  
Vol 26 ◽  
pp. 97 ◽  
Author(s):  
María Lozano Estivalis ◽  
Joan Andrés Traver Martí ◽  
Tomás Segarra Arnau
Keyword(s):  
Quality Of Life ◽  
Public And Private ◽  
The Public ◽  
Public Square ◽  
Definition Of ◽  
The Relationship ◽  
Determinant Factor

In neoconservative periods, education is no longer considered a determinant factor in the quality of life. Then, which should be the first task of education? The answer lies in the configuration of spaces for encounters, recognition, and communication. The responsibility of the educator is to facilitate its construction in the public square, starting from “what we know, we know among all”. Faced with the discourse of educational competences this challenge presents a chance to critically review its interests based on the separation between the public and private spheres, the relationship between education and work, and the definition of citizenship.

scholarly journals How Much Do We Know? Assessing Public Knowledge, Awareness, Impact, and Awareness Guidelines for Epilepsy: A Systematic Review

2020 ◽  
Vol 13 (1) ◽  
pp. 794-807
Author(s):  
O.P. Musekwa ◽  
L. Makhado ◽  
A. Maphula ◽  
J.T. Mabunda
Keyword(s):  
Quality Of Life ◽  
Public Awareness ◽  
Public Knowledge ◽  
The Public ◽  
Inadequate Knowledge ◽  
Boolean Search ◽  
Level Of Knowledge ◽  
Index Terms ◽  
The Impact

Background: Epilepsy misconceptions are widespread; these influence the quality of life of people living with epilepsy (50 million people worldwide) and their families. Objective: The review’s objective was to highlight the public knowledge and awareness of epilepsy with an emphasis on its impact, gaps, and available guidelines for public awareness. Methods: The search databases included PubMed, EBSCOhost, Google Scholar using keywords, index terms as well as the Boolean search. Twenty-seven studies were included, which yielded three themes and six sub-themes. Results: Three themes emerged from the data: knowledge, beliefs, and awareness of epilepsy, the impact of epilepsy, and epilepsy awareness guide. From these themes, six sub-themes were established. Implications: Generally, people in Africa continue to hold misconceptions about epilepsy. This study shows that there is a need for further research examining the level of knowledge and awareness held in different contexts to develop a means to educate the general public as it has been revealed that there is generally inadequate knowledge and awareness of epilepsy. Furthermore, this study gathers knowledge that is now accessible as a threshold to much-needed research on epilepsy education, awareness and knowledge in Africa.

scholarly journals Impact of local self-government on public development through implementation of infrastructure projects

2020 ◽  
pp. 113-118
Author(s):  
A.O. Lepeshkin ◽  
Keyword(s):  
Quality Of Life ◽  
Local Governments ◽  
Standard Of Living ◽  
Infrastructure Projects ◽  
Public Authorities ◽  
The Public ◽  
Managerial Decisions ◽  
Sociological Studies ◽  
The Impact

Analyzed is the problem of implementing infrastructure projects as one of resources of local governments and authorities in general for high-quality social development. Special attention is paid to studying the impact of infrastructure projects on quality of life of citizens, as well as identifying influence of managerial decisions of authorities on the quality of life in Russian cities. The article concludes, that new sociological studies identifying the pain points of regions and study the public demand for implementation of various types of infrastructure projects can become an additional motivation, and attract attention from public authorities to the issues, raised in the article, and as a result would contribute to creating a comfortable urban environment, as well as improving the standard of living of population.

Abstract 127: Differences in Care Patterns, Health Status, and Outcomes of Atrial Fibrillation in Patients With and Without Diabetes: Findings From the ORBIT-AF Registry

2017 ◽  
Vol 10 (suppl_3) ◽  
Author(s):  
Justin B Echouffo Tcheugui ◽  
Peter Shrader ◽  
Laine Thomas ◽  
Bernard J Gersh ◽  
Peter Kowey ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Health Status ◽  
Oral Anticoagulants ◽  
Bleeding Events ◽  
Risk Of Death ◽  
Increased Risk ◽  
Care Patterns ◽  
The Impact

Objective: Diabetes is a common among patients with atrial fibrillation (AF). However, little is known on the impact of diabetes on symptoms, health status, care and outcomes among AF patients. We assessed whether symptoms, health status, care and outcomes differ between AF patients with and without diabetes. Methods: This observational cohort study included 9,749 patients with AF from the Outcomes Registry for Better Informed Treatment of Atrial Fibrillation registry, a prospective, nationwide, multicenter outpatient registry of patients with incident and prevalent AF enrolled at 174 sites between June 2010 and August 2011. The outcomes were symptoms, health status, and AF treatment, as well as 2-year risks of death, readmission, thrombomebolic events, heart failure (HF) and AF progression. Results: Among AF patients; those with diabetes (29.5%) were younger and more likely to have hypertension, chronic kidney disease, HF, coronary heart disease, and stroke. Patients with diabetes had a lower Atrial Fibrillation Effects on Quality of Life score (80.6 [IQR: 62.5 - 92.6] vs. 82.4 [IQR: 67.6 -93.5]; P = 0.025), but a higher CHA 2 DS 2 -VASc score (5 [IQR: 4 - 6] vs. 4 [2 - 5]; P <0.0001) and were more likely to receive anticoagulation ( P <0.001). Diabetes was associated with higher mortality, with a greater overall (adjusted hazard ratio [aHR]: 1.63 [95% CI: 1.04-2.56] for age<70 vs. 1.25 [1.09-1.44] for age ≥70) and cardiovascular (2.20 [1.22-3.98] for age<70 vs. 1.24 [1.02-1.51] for age ≥70) mortality risks before age 70 years. Diabetes conferred a higher risk of non-cardiovascular (CV) death (1.29 [1.06-1.56]), sudden cardiac death (1.53 [1.04-2.26]), hospitalization (1.15 [1.09-1.22]), CV hospitalization (1.13 [1.05-1.22]) and non-CV and non-bleeding-related hospitalization (1.19 [1.10-1.30]); but no increase in risks of thromboembolic events, bleeding related hospitalization, new-onset HF, and AF progression. The use of oral anticoagulants (OAC) modifies the relation of diabetes and all-cause hospitalization, with a higher risk among those on OAC (1.21 [1.12-1.29]). Conclusions: Among patients with AF, diabetes was associated with worse AF symptoms and lower quality of life, as well an increased risk of death and hospitalizations, but not with the risk of thromboembolic or bleeding events.

OP80 Impact Of Patient Group Participation At Scottish Medicines Consortium Committee Meetings

2019 ◽  
Vol 35 (S1) ◽  
pp. 20-20
Author(s):  
Jennifer Dickson ◽  
Lindsay Lockhart ◽  
Louise Taylor ◽  
Jackie McCormack ◽  
Laura Walker
Keyword(s):  
Quality Of Life ◽  
Patient Group ◽  
Patient Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
The Public ◽  
Group Participation ◽  
Emerging Themes ◽  
The Impact

IntroductionThe Scottish Medicines Consortium (SMC) encourages patient group (PG) representatives to participate in the decision-making committee meetings, answering questions from committee members and providing points of clarity throughout discussions if required. In a continuous improvement approach the process and the participant experience is continually evaluated to monitor impact and emerging themes.MethodsThe interactions between committee members and PG representatives are recorded in writing by the public involvement team to monitor the questions or points of clarity raised. These interactions were analyzed using thematic analysis to look for emerging themes. Following the meeting, PG representatives are invited to complete an online survey on their experience of working with SMC.ResultsFrom July 2017 to October 2018, 36 PG representatives have attended committee meetings for the discussion of their submission. Committee members asked 17 PG representatives to contribute. Key themes that have emerged to date include insight into the impact of living with the condition on quality of life and how a new medicine may affect this. Survey feedback has been positive with participants reporting that patient engagement has been strengthened, and that the patient voice is heard, valued and supports committee members in making fully informed decisions. PG representatives expressed a willingness to participate again. Feedback also highlighted that the preparatory support offered to PG representatives by the public involvement team is highly valued.ConclusionsPatient group participation in committee meetings has been received positively by PG representatives. They report that discussions relating to quality of life impact of medicines on patients and carers better reflect the lived experience, enriching committee's deliberations. This demonstrates SMCs commitment to openness and transparency and has strengthened patient engagement in our processes.

Self-Compassion and Quality of Life in Adults Who Stutter

2020 ◽  
Vol 29 (4) ◽  
pp. 2097-2108
Author(s):  
Robyn L. Croft ◽  
Courtney T. Byrd
Keyword(s):  
Quality Of Life ◽  
Social Connectedness ◽  
The Self ◽  
Future Research ◽  
Self Compassion ◽  
Adults Who Stutter ◽  
And Gender ◽  
Relationship Of ◽  
The Impact

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.

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