scholarly journals Quality of life and disease burden in patients with MCI and dementia

2020 ◽  
Vol 16 (S10) ◽  
Author(s):  
Woori Moon
Keyword(s):  
Quality Of Life ◽  
Disease Burden

scholarly journals Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Konrad Bork ◽  
John T. Anderson ◽  
Teresa Caballero ◽  
Timothy Craig ◽  
Douglas T. Johnston ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hereditary Angioedema ◽  
Clinical Management ◽  
Disease Burden ◽  
The United States ◽  
Consensus Meeting ◽  
Consensus Statements ◽  
Consensus Report

Abstract Background Hereditary angioedema (HAE) is a rare disease characterized by unpredictable, potentially life-threatening attacks, resulting in significant physical and emotional burdens for patients and families. To optimize care for patients with HAE, an individualized management plan should be considered in partnership with the physician, requiring comprehensive assessment of the patient’s frequency and severity of attacks, disease burden, and therapeutic control. Although several guidelines and consensus papers have been published concerning the diagnosis and treatment of HAE, there has been limited specific clinical guidance on the assessment of disease burden and quality of life (QoL) in this patient population. Practical guidance is critical in supporting effective long-term clinical management of HAE and improving patient outcomes. The objective of this review is to provide evidence-based guidelines for an individualized assessment of disease burden and QoL in patients with HAE. Methods A consensus meeting was held on February 29, 2020, consisting of 9 HAE experts from the United States and Europe with extensive clinical experience in the treatment of HAE. Consensus statements were developed based on a preliminary literature review and discussions from the consensus meeting. Results Final statements reflect the consensus of the expert panel and include the assessment of attack severity, evaluation of disease burden, and long-term clinical management of HAE caused by C1-esterase inhibitor deficiency. Patient-reported outcome measures for assessing HAE attack severity and frequency are available and valuable tools; however, attack frequency and severity are insufficient markers of disease severity unless they are evaluated in the broader context of the effect on an individual patient’s QoL. QoL assessments should be individualized for each patient and minimally, they should address the interference of HAE with work, school, social, family, and physical activity, along with access to and burden of HAE treatment. Advances in HAE therapies offer the opportunity for comprehensive, individualized treatment plans, allowing patients to achieve minimal attack burden with reduced disease and treatment burden. Conclusion This consensus report builds on existing guidelines by expanding the assessment of disease burden and QoL measures for patients with HAE.

scholarly journals The impact of multimorbidity patterns on health-related quality of life in the general population: results of the Belgian Health Interview Survey

2021 ◽  
Author(s):  
Lisa Van Wilder ◽  
Brecht Devleesschauwer ◽  
Els Clays ◽  
Stefanie De Buyser ◽  
Johan Van der Heyden ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Diseases ◽  
Disease Burden ◽  
Health Related Quality ◽  
Health Interview Survey ◽  
Related Quality ◽  
Health Related ◽  
Interview Survey ◽  
The Impact

Abstract Background Chronic diseases and multimorbidity are a major cause of disease burden—for patients, caregivers, and society. Little is known however about potential interaction effects between specific disease combinations. Besides an additive effect, the presence of multiple conditions could also act synergistically or antagonistically regarding the impact on patients’ health-related quality of life (HRQoL). The aim was to estimate the impact of coexisting chronic diseases on HRQoL of the adult general Belgian population. Methods The Belgian Health Interview Survey 2018 provided data on self-reported chronic conditions and HRQoL (EQ-5D-5L) for a nationally representative sample. Linear mixed models were used to analyze two-way and three-way interactions of disease combinations on HRQoL. Results Multimorbidity had a prevalence of 46.7% (≥ 2 conditions) and 29.7% (≥ 3 conditions). HRQoL decreased considerably with the presence of multiple chronic diseases. 14 out of 41 dyad combinations and 5 out of 13 triad combinations showed significant interactions, with a dominant presence of negative/synergistic effects. Positive/antagonistic effects were found in more subjective chronic diseases such as depression and chronic fatigue. Conditions appearing the most frequently in significant disease pair interactions were dorsopathies, respiratory diseases, and arthropathies. Conclusions Diverse multimorbidity patterns, both dyads and triads, were synergistically or antagonistically associated with lower HRQoL. Tackling the burden of multimorbidity is needed, especially because most disease combinations affect each other synergistically, resulting in a greater reduction in HRQoL. Further knowledge about those multimorbidity patterns with a greater impact on HRQoL is needed to better understand disease burden beyond mortality and morbidity data.

scholarly journals Therapy for myeloproliferative neoplasms: when, which agent, and how?

Hematology ◽  
2014 ◽  
Vol 2014 (1) ◽  
pp. 277-286 ◽  
Author(s):  
Holly L. Geyer ◽  
Ruben A. Mesa
Keyword(s):  
Quality Of Life ◽  
Disease Burden ◽  
Myeloproliferative Neoplasms ◽  
Jak Inhibitors ◽  
Symptom Profiles ◽  
Risk Of Progression ◽  
Life Threatening ◽  
Jak2 Inhibition

Abstract Myeloproliferative neoplasms, including polycythemia vera (PV), essential thrombocythemia, and myelofibrosis (MF) (both primary and secondary), are recognized for their burdensome symptom profiles, life-threatening complications, and risk of progression to acute leukemia. Recent advancements in our ability to diagnose and prognosticate these clonal malignancies have paralleled the development of MPN-targeted therapies that have had a significant impact on disease burden and quality of life. Ruxolitinib has shown success in alleviating the symptomatic burden, reducing splenomegaly and improving quality of life in patients with MF. The role and clinical expectations of JAK2 inhibition continues to expand to a variety of investigational arenas. Clinical trials for patients with MF focus on new JAK inhibitors with potentially less myelosuppression (pacritinib) or even activity for anemia (momelotinib). Further efforts focus on combination trials (including a JAK inhibitor base) or targeting new pathways (ie, telomerase). Similarly, therapy for PV continues to evolve with phase 3 trials investigating optimal frontline therapy (hydroxyurea or IFN) and second-line therapy for hydroxyurea-refractory or intolerant PV with JAK inhibitors. In this chapter, we review the evolving data and role of JAK inhibition (alone or in combination) in the management of patients with MPNs.

scholarly journals Impact of long-COVID on health-related quality of life in Japanese COVID-19 patients

2021 ◽  
Author(s):  
Shinya Tsuzuki ◽  
Yusuke Miyazato ◽  
Mari Terada ◽  
Shinichiro Morioka ◽  
Norio Ohmagari ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Burden ◽  
Self Report ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Long Duration ◽  
Related Quality ◽  
Health Related ◽  
Basic Characteristics

AbstractBackgroundThe empirical basis for a quantitative assessment of the disease burden imposed by long-COVID is currently scant. We aimed to assess the disease burden caused by long-COVID in Japan.MethodsWe conducted a cross sectional self-report questionnaire survey. The questionnaire was mailed to 530 eligible patients, who were recovered from acute COVID-19 in April 2021. Answers were classified into two groups; participants who have no symptom and those who have any ongoing symptoms that lasted longer than four weeks at the time of the survey. We compared health-related quality of life scores estimated by the EQ-5D-3L questionnaire between these two groups after adjusting basic characteristics of the participants by propensity score matching.Results349 participants reported no symptoms and 108 reported any symptoms at the time of the survey. The participants who reported any symptoms showed a lower value on a Visual Analogue Scale (median 70 [IQR 60-80]) and on the EQ-5D-3L (median 0.81 [IQR 0.77-1.0]) than those reporting no symptoms (median 85 [IQR 75-90] and 1.0 [IQR 1.0-1.0], respectively). After adjusting for background characteristics, these trends did not change substantially (Visual Analog Scale: median 70 [IQR 60-80] vs 80 [IQR 77-90], EQ-5D-3L: median 0.81 [IQR 0.76-1.0] vs 1.0 [IQR 1.0-1.0]).ConclusionsDue to their long duration, long-COVID symptoms represent a substantial disease burden expressed in impact on health-related quality of life.Trial registrationNot applicable.

scholarly journals Quality of life and spirituality of patients with chronic kidney disease: pre- and post-transplant analysis

2020 ◽  
Vol 73 (suppl 5) ◽  
Author(s):  
Letícia Meazzini de Olivera ◽  
Meiry Fernanda Pinto Okuno ◽  
Dulce Aparecida Barbosa ◽  
Ricardo de Castro Cintra Sesso ◽  
Gerson Scherrer Júnior ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Kidney Disease ◽  
Peritoneal Dialysis ◽  
Kidney Disease ◽  
Kidney Transplant ◽  
Disease Burden ◽  
Four Dimensions ◽  
Post Transplant ◽  
Transplant Patients

ABSTRACT Objective: to compare the quality of life (QoL) of patients under dialysis and after kidney transplant; correlate the QoL of transplant patients to sociodemographic, morbid and spirituality/religiosity variables. Method: prospective study with a quantitative approach, with a sample of 27 patients who underwent peritoneal dialysis or dialysis undergoing kidney transplant. QoL and spirituality were assessed by the KDQOL-SF and WHOQOL-SRPB tools, being correlated with sociodemographic and economic variables. Results: the dimensions of total mental component, kidney disease effects and kidney disease burden showed significant improvement in the post-transplant period, with p <0.0004. There was a significant correlation between four dimensions of spirituality and seven dimensions of QoL; p ranged from 0.04 to 0.006. Conclusion: there was a significant improvement in QoL in the post-transplant period. The dimensions of spirituality: wholeness and integration, spiritual connection, wonder and inner peace were positively correlated with seven dimensions of QoL.

Morbidity Pattern and Its Determinants in Urban Field Practice Area of VIMS, Bellary - A Cross-Sectional Study

2021 ◽  
Vol 8 (30) ◽  
pp. 2763-2767
Author(s):  
Pratibharani Reddy ◽  
Ramesh K ◽  
Anju Mariam Jacob ◽  
Gangadhara Goud T
Keyword(s):  
Quality Of Life ◽  
Disease Burden ◽  
Sampling Technique ◽  
Cross Sectional Study ◽  
Age Group ◽  
Sectional Study ◽  
Cross Sectional ◽  
Training Centre ◽  
The Family

BACKGROUND India is doubly burdened with communicable and non-communicable diseases (NCD). Knowledge regarding morbidity profile is important for timely intervention so as to improve the quality of life. For effective health strategies, it is important to know the disease burden of a community. As for the effective preventive strategies, it’s important to know the information regarding disease burden and changing trends of diseases in the locality. Hence this study was done to find the morbidity pattern of urban population in Bellary district, Karnataka. METHODS A cross sectional study was carried out in Millerpet, urban health training centre (UHTC), Bellary, Karnataka. The respective UHTC covers 69195 populations, which has eight wards. Simple random sampling technique was adopted to select the ward. The study was carried out in the selected ward and the study duration was for a period of 3 months. Based on the estimated sample size, 416 houses were selected using random number method. Statistical package for social sciences (SPSS) software version 26 was used for analysing data. Descriptive statistics were used to describe socio demographic and morbidity conditions. RESULTS The most common morbidity among 416 houses were found to be diabetes (22.8 %) followed by hypertension (20 %) and musculoskeletal problems (9 %). Majority of the houses were of nuclear type and the most common age group was 31 - 60 (91.8 %) years followed by 13 - 30 years (80.8 %). 167 (40.1 %) houses had at least one morbidity and 451 (41.4) subjects had at least one morbidity. Socio-demographic variables like age group, family size, monthly income, occupation of head of the family and type of the family were found to be statistically significant. CONCLUSIONS The study revealed that non communicable are the most common diseases present and there is a need to further evaluate the factors responsible so that preventive measures can be taken at the earliest so as to improve the quality of life. KEYWORDS Morbidity Pattern, Urban, Bellary

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