Investigation of the Impact of Myelodysplasia (MDS) From the Patients' Perspective

Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 5049-5049 ◽  
Author(s):  
Stephen P McKenna ◽  
James Twiss ◽  
Jeanette N Wilburn ◽  
Sigrid Rebecca Crawford ◽  
Kevin Loth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Research Funding ◽  
Sleep Problems ◽  
World Health ◽  
Activity Limitations ◽  
Wide Range ◽  
Fundamental Needs ◽  
The Impact ◽  
Patients Perspective

Abstract Abstract 5049 Introduction: Little research is currently available on the impact of MDS from the patients' perspective. Where research has been conducted it has predominantly used generic cancer outcome measures. Such measures do not provide an accurate assessment of MDS patients as they miss important aspects of the condition. A qualitative study was conducted with MDS patients to investigate how their lives are affected by the condition. Methods: Qualitative, unstructured interviews were conducted with patients. Verbatim transcripts of the interviews were analysed thematically to assess the impact of MDS in terms of symptoms experienced, activity limitations and quality of life (QoL). Emergent themes were identified, clustered and harmonised. Investigation of issues related to impairments and activity limitations were guided by the World Health Organizations (WHO) classification of outcomes related to health and injury. Investigation of QoL issues was guided by the needs-based model of QoL (Hunt SM, McKenna SP. The QLDS: A scale for the measurement of quality of life in depression. (1992). Health Policy 22; 307–319). This model identifies several core fundamental needs that are important to an individual's QoL and adjustment to society. Illness affects QoL by preventing the satisfaction of these needs. Results: The sample included 30 participants (male 17 (56.7%); mean (SD) age 65.5 (11.3) years with low to intermediate-1 risk MDS. Illness information for the sample is shown in Table 1. The analyses identified several symptoms. The most frequently reported symptoms were; fatigue (97%), breathlessness (60%), increased infections (60%), sleep problems (53%), cognitive problems (50%), temperature fluctuations (47%), increased bruising (40%) and bleeding (10%), pain (30%), depression (23%) and anxiety (10%). Several common functions were affected by MDS, including; standing, walking, bending, lifting, carrying and rising from sitting. Various more complex functions were also affected such as the ability to socialise, shop and do jobs around the house. A total 33 QoL issues were identified. Nine fundamental needs were affected by MDS; subsistence, safety and security, affection, understanding, participation, leisure, self-actualisation, identity and independence. Conclusions: The study was successful in developing outcome models describing how MDS affects symptoms, activity limitations and QoL. Many symptoms were experienced including several in addition to those directly associated with anaemia. Functioning was also frequently affected. A wide range of QoL issues were identified with several fundamental needs impaired to some extent. Following this study a large bank of potential items has been created that will aid the development of MDS-specific outcome scales assessing symptoms, activity limitations and QoL. Disclosures: McKenna: Celgene Ltd: Consultancy, Research Funding. Twiss:Celgege Ltd: Consultancy, Research Funding. Wilburn:Celegene Ltd: Consultancy, Research Funding. Crawford:Celegene: Consultancy, Research Funding. Loth:Celgene Ltd: Employment.

scholarly journals The patients’ perspective on coordinated action for cancer and AMR

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
K Apostolidis
Keyword(s):  
Quality Of Life ◽  
Immune System ◽  
Cancer Patients ◽  
Cancer Treatments ◽  
Unique Challenge ◽  
Coordinated Action ◽  
The Impact ◽  
Patients Perspective

Abstract The speaker will present the perspective of the cancer patients, and the challenges they encounter across the spectrum of care and what measures they consider relevant in terms of prevention, diagnosis, treatment and, indeed, to raise awareness of the impact of AMR on rendering cancer treatments ineffective. She will elaborate on survivorship, and on the impact of AMR on the quality of life of patients, their carers, and families. Emphasis will be given on the implications of modern therapies, such as immunotherapy, representing a unique challenge in terms of better understanding the effect on overall health of patients, with the effect they have the immune system, further weakening the patient and leaving him/her exposed to infections potentially of higher risk than cancer itself.

scholarly journals The Impact of COVID-19 Pandemic and Lockdown Measures on Quality of Life among Italian General Population

2021 ◽  
Vol 10 (2) ◽  
pp. 289 ◽  
Author(s):  
Maria Stella Epifanio ◽  
Federica Andrei ◽  
Giacomo Mancini ◽  
Francesca Agostini ◽  
Marco Andrea Piombo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Online Survey ◽  
Physical Space ◽  
Sampling Strategy ◽  
World Health ◽  
Snowball Sampling ◽  
World Health Organization Quality ◽  
The World ◽  
The Impact

The COVID-19 pandemic that has hit the world in the year 2020 has put a strain on our ability to cope with events and revolutionized our daily habits. On 9 March, Italy was forced to lockdown to prevent the spread of the infection, with measures including the mandatory closure of schools and nonessential activities, travel restrictions, and the obligation to spend entire weeks in the same physical space. The aim of this study was to assess the impact of the COVID-19 pandemic and lockdown measures on quality of life (QoL) in a large Italian sample, in order to investigate possible differences in QoL levels related to both demographic and pandemic-specific variables. A total of 2251 Italian adults (1665 women, mainly young and middle adults) were recruited via a snowball sampling strategy. Participants were requested to answer to an online survey, which included demographic and COVID-related information items, and the World Health Organization Quality of Life BREF questionnaire (WHOQOL-BREF). The results showed statistically significant differences in QoL depending on a number of variables, including sex, area of residence in Italy, and being diagnosed with a medical/psychiatric condition. To our knowledge, this is the first study to assess QoL during COVID-19 pandemic in Italy, therefore the present findings can offer guidelines regarding which social groups are more vulnerable of a decline in QoL and would benefit of psychological interventions.

scholarly journals Quality of Life in CKD Patients on Low-Protein Diets in a Multiple-Choice Diet System. Comparison between a French and an Italian Experience

Nutrients ◽  
2021 ◽  
Vol 13 (4) ◽  
pp. 1354
Author(s):  
Antioco Fois ◽  
Massimo Torreggiani ◽  
Tiziana Trabace ◽  
Antoine Chatrenet ◽  
Elisa Longhitano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Choice ◽  
Protein Restriction ◽  
World Health ◽  
Life Questionnaire ◽  
Historical Cohort ◽  
Low Protein ◽  
Ckd Stage ◽  
The Impact

Prescribing a low-protein diet (LPD) is part of the standard management of patients in advanced stages of chronic kidney disease (CKD). However, studies on the quality of life (QoL) of patients on LPDs are lacking, and the impact these diets have on their QoL is often given as a reason for not prescribing one. We, therefore, decided to assess the QoL in a cohort of CKD stage 3–5 patients followed up by a multiple-choice diet approach in an outpatient nephrology clinic in France. To do so, we used the short version of the World Health Organization’s quality of life questionnaire and compared the results with a historical cohort of Italian patients. We enrolled 153 patients, managed with tailored protein restriction in Le Mans, and compared them with 128 patients on similar diets who had been followed in Turin (Italy). We found there were no significant differences in terms of age (median 73 vs. 74 years, respectively), gender, CKD stage, and comorbidities (Charlson’s Comorbidity Index 7 vs. 6). French patients displayed a greater body mass index (29.0 vs. 25.4, p < 0.001) and prevalence of obesity (41.2 vs. 15.0%, p < 0.001). Baseline protein intake was over the target in France (1.2 g/kg of real body weight/day). In both cohorts, the burden of comorbidities was associated with poorer physical health perception while kidney function was inversely correlated to satisfaction with social life, independently of the type of diet. Our study suggests that the type of LPD they follow does not influence QoL in CKD patients and that a personalized approach towards protein restriction is feasible, even in elderly patients.

Pharmacoeconomic features of the use of drugs used in the treatment of allergic rhinitis

2021 ◽  
pp. 9-16
Author(s):  
Afanasyeva T.G. ◽  
Lavrova N.N. ◽  
Tumentseva V.R.
Keyword(s):  
Quality Of Life ◽  
Allergic Rhinitis ◽  
Nasal Mucosa ◽  
Generic Drugs ◽  
Cost Minimization ◽  
Nasal Congestion ◽  
World Health ◽  
Cost Minimization Analysis ◽  
Wide Range

Rhinitis is an inflammation of the nasal mucosa; today, according to the World Health Organization, the prevalence of the disease is 40% of the world's population. Allergic rhinitis is the most common type of chronic rhinitis, affecting 10–20% of the world's population, and the severity of the disease is associated with a significant deterioration in the quality of life, sleep and performance. Allergic rhinitis is an inflammatory disease of the nasal mucosa caused by exposure to an allergen, causing IgE-mediated inflammation. Clinically, the disease is characterized by the following main symptoms: rhinorrhea, sneezing, itching and nasal congestion. Despite the general symptoms of allergic rhinitis, its impact on the quality of life of patients and the significant cost of treatment, including pharmacotherapy, many patients do not adhere to drug treatment regimens due to their insufficient effectiveness in eliminating the emerging symptoms. Pharmacoeconomic research identifies, measures and compares the costs and effects of drug use. This framework includes research methods related to cost minimization, cost-effectiveness, decision analysis, cost of illness, and patient quality of life. This article will consider one of the four main methods for assessing pharmacoeconomics - cost minimization analysis. A cost-minimization analysis is a pharmacoeconomic assessment by comparing the costs of two or more drug alternatives regardless of outcome. Since the pharmaceutical market is represented by a wide range of original, reference and generic drugs for the treatment of allergic rhinitis, an important aspect of our research is the selection of effective and economically acceptable therapy for outpatients.

scholarly journals Evaluation of women’s quality of life after breast reconstruction surgery

2020 ◽  
Vol 66 (2) ◽  
Author(s):  
Marta Stanisz ◽  
Ewelina Kolak ◽  
Dorota Branecka-Woźniak ◽  
Renata Robaszkiewicz-Boukaz ◽  
Przemysław Ciepiela ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Breast Reconstruction ◽  
Great Influence ◽  
Well Being ◽  
World Health ◽  
World Health Organization Quality ◽  
Reconstruction Surgery ◽  
The Impact

Introduction: Breast cancer is the most common malignancy among women, and is usually treated surgically. Mastectomy has a great influence on the mental and physical condition of women. Breast reconstruction offers them a chance to improve their quality of life (QOL) and self-image.The main aim of the study was to gain knowledge about the impact of breast reconstruction on the QOL of women following mastectomy, and an analysis of the QOL after breast reconstruction, in the context of prosthesis effect assessment.Materials and methods: The study comprised 100 women following breast reconstructive surgery involved in 1 of the 7 “Amazon Clubs” (post-mastectomy women’s associations) in the West Pomeranian Voivodeship, northwest Poland. The study was based on the author’s questionnaire, and a shortened standardized version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF) questionnaire. Statistical calculations were performed with StatSoft Statistica v10 software, adopting a significance level of p < 0.05.Results: The women who decided to have breast reconstruction surgery, noticed improved well-being (67%) and experiencedan increase in self-confidence (61%). The vast majority ofthe patients surveyed (93%) were satisfied with the effectof the prosthesis. Statistically significant differences in QOL were observed in the following spheres: rest and sleep, work capacity, negative feelings, and financial resources (p < 0.05) in relation to the evaluation of the prosthesis effect.Conclusions: 1. Breast reconstruction has a positive influence on improvements in well-being, increasing self-esteem, and the assessment of a more attractive appearance in women of all ages. 2. Breast reconstruction surgery has a positive impact on QOL and health in the physical, psychological, and environmental domains, especially in the women who are satisfied with the effects of the surgery. 3. A negative assessment of the breast reconstruction effect has an adverse influence on QOL. Identifying the factors affecting dissatisfaction with the post-operative outcome is crucial for a complete understanding of the subject, and for implementing measures aimed at improving the QOL of these women.Keywords: quality of life; mastectomy; breast cancer; breast reconstruction; breast surgery.

scholarly journals The importance of anemia and health-related quality of life in the elderly

2020 ◽  
Vol 39 (2) ◽  
pp. 135
Author(s):  
Raditya Wratsangka ◽  
Rully Ayu Nirmalasari Haryadi Putri
Keyword(s):  
Quality Of Life ◽  
Hemoglobin Concentration ◽  
The Elderly ◽  
World Population ◽  
Health Related Quality ◽  
Wide Range ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Anemia is a global health problem with an extremely high prevalence and occurring in nearly 25% of the world population, particularly in the elderly group. Currently Indonesia is facing a rapid growth of the elderly population, with around 21 million elderly (8.2% of the total population), that is projected to increase to 33.7 million (11.8%) in the year 2025. Anemia in the elderly is frequently neglected, although the facts show that low hemoglobin concentration is an important marker of physiological decline and functional limitations. Although the factor of intrinsic aging may cause low hemoglobin concentration, anemia in the elderly is known to have a wide range w88ith regard to etiology, underlying disorders, and  possible mechanisms, such that it should be clinically followed up. Whatever its causes or underlying pathophysiological, anemia in the elderly has been proven to play a role in their morbidity and mortality, and may decrease their quality of life, that comprises all aspects of physical, mental, and social health, known as health-related quality of life (HRQoL). The impact of anemia on HRQoL has been studied in various populations, and most studies report the presence of an association between HRQoL and anemia in elderly individuals, which on the subscale level is particularly associated with physical health. Early diagnosis of anemia is important to prevent aggravation of the condition, to retard the progress of the disease, and to improve the health-related quality of life (HRQoL) of the patient. Prior to determining the treatment plan, the primary diagnosis and the comorbidities, especially treatable disorders, had better be identified first. The available data show that the overall prognosis will improve for anemia in patients with well-managed and corrected chronic disorders.

Patients’ perspective of the impact of COPD on quality of life: a focus group study for patients with COPD

2018 ◽  
Vol 40 (3) ◽  
pp. 573-579 ◽  
Author(s):  
Anan Jarab ◽  
Eman Alefishat ◽  
Tareq Mukattash ◽  
Karem Alzoubi ◽  
Sharrel Pinto
Keyword(s):  
Quality Of Life ◽  
Focus Group ◽  
Focus Group Study ◽  
The Impact ◽  
Patients Perspective

The Impact of Familial Partial Lipodystrophy on Quality of Life from the Patients’ Perspective

2020 ◽  
Vol 14 (4) ◽  
pp. 590
Author(s):  
Elif Oral ◽  
Rob Halter ◽  
Caroline Crowson ◽  
Nandini Hadker ◽  
Brant Hubbard ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Partial Lipodystrophy ◽  
Familial Partial Lipodystrophy ◽  
The Impact ◽  
Patients Perspective

THE IMPACT OF SIBLING STATUS ON CHINESE COLLEGE STUDENTS' QUALITY OF LIFE

2005 ◽  
Vol 33 (3) ◽  
pp. 227-242 ◽  
Author(s):  
Glen D. Edwards ◽  
Art W. Bangert ◽  
Gregory Cooch ◽  
Naotaka Shinfuku ◽  
Tao Chen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
College Students ◽  
The Self ◽  
World Health ◽  
World Health Organization Quality ◽  
Chinese College Students ◽  
Self Rating ◽  
Holistic Understanding ◽  
The Impact

The World Health Organization Quality of Life-100 (WHOQOL-100, Power, Harper, Bullinger, & WHO1QLG), the Self-Rating Anxiety Scale (Zhang, 1993), and the Self-Rating Depression Scale (Zhang, 1993) were used to determine whether Chinese college students from only child and sibling child families rated perceptions of their quality of life differently. Small to moderate significant differences were found when comparing only students to sibling students on the WHOQOL-100 with no significant differences on measures of anxiety and depression. These results suggest that only students do not differ greatly from sibling students in terms of their overall perceptions of their quality of life. A unique characteristic of this study was that it targeted older college students born after implementation of the one-child-per-family policy in China. Also, self-rating instruments were used to gain a greater holistic understanding of the emotional well-being, physical state and social functioning of students. Several psychosocial and economic reasons, including methodological issues related to this study's findings, were discussed.

scholarly journals Insomnia and Quality of Life in Generalized Anxiety Disorder: Impact on Clinical Presentation and Response to Pregabalin and Venlafaxine-XR

2009 ◽  
Vol 24 (S1) ◽  
pp. 1-1 ◽  
Author(s):  
M.A. Mychaskiw ◽  
J.M. Alvir ◽  
B.K. Herman ◽  
S. Pallanti ◽  
A. Joshi
Keyword(s):  
Quality Of Life ◽  
Anxiety Disorder ◽  
Generalized Anxiety Disorder ◽  
Sleep Problems ◽  
Generalized Anxiety ◽  
Medical Outcomes ◽  
Double Blind ◽  
Disturbance Factor ◽  
The Impact

Aims:To assess the impact of insomnia on quality of life (QoL) and functioning in patients with generalized anxiety disorder (GAD), and evaluate the efficacy of pregabalin and venlafaxine-XR in improving sleep and QoL.Methods:A double-blind trial in adults who met DSM-IV criteria for GAD, with a HAM-A total score ≥20,randomized to 8-weeks of flexible-dose treatment with pregabalin (300-600 mg/d, N=121), venlafaxine-XR (75-225 mg/d, N=125), or placebo (N=128).Results:At baseline, 64% of all subjects had insomnia (according to the Medical Outcomes Study Sleep scale [MOS]-Sleep Problems Index [SPI] criteria).While HAM-A total scores (minus the insomnia item) were similar for patients with and without baseline insomnia (25.7 vs. 25.0) those with reported significantly more impairment on the Quality of Life, Enjoyment, and Satisfaction Questionnaire (Q-LES-Q; 45.4 vs. 53.6; p< 0.0001) and Sheehan Disability Scale (SDS; 17.5 vs.14.3; p< 0.0001) than those without. At endpoint, there was a significantly greater mean improvement in MOS-sleep disturbance factor and MOS-SPI with pregabalin (-29.0 and -21.1, respectively) than venlafaxine-XR (-14.7 and -11.0) or placebo (-15.2 and -12.5; all p< 0.05). In more pregabalin (64%) than venlafaxine-XR (51%) or placebo (52%) subjects, abnormal baseline sleep had normalized by endpoint. Endpoint change in MOS-SPI significantly correlated with improvement in both Q-LES-Q and SDS-total scores (Spearman r-values, -0.48 and 0.46, respectively; both p< 0.0001; all subjects).Conclusion:Significantly greater impairment in QoL and functioning was observed in patients with high (vs. low) levels of insomnia. Pregabalin produced significantly greater improvement in insomnia than venlafaxine-XR or placebo.

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