scholarly journals Quality of life among Iranian patients with beta-thalassemia major using the SF-36 questionnaire

2013 ◽  
Vol 131 (3) ◽  
pp. 166-172 ◽  
Author(s):  
Sezaneh Haghpanah ◽  
Shiva Nasirabadi ◽  
Fariborz Ghaffarpasand ◽  
Rahmatollah Karami ◽  
Mojtaba Mahmoodi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Thalassemia Major ◽  
Poor Compliance ◽  
Beta Thalassemia ◽  
Cross Sectional ◽  
Beta Thalassemia Major ◽  
Sf 36 ◽  
Chelating Therapy

CONTEXT AND OBJECTIVE Patients with beta-thalassemia major (β-TM) experience physical, psychological and social problems that lead to decreased quality of life (QoL). The aim here was to measure health-related QoL and its determinants among patients with β-TM, using the Short Form-36 (SF-36) questionnaire. DESIGN AND SETTING Cross-sectional study at the Hematology Research Center of Shiraz University of Medical Sciences, in southern Iran. METHODS One hundred and one patients with β-TM were randomly selected. After the participants' demographics and disease characteristics had been recorded, they were asked to fill out the SF-36 questionnaire. The correlations of clinical and demographic factors with the QoL score were evaluated. RESULTS There were 44 men and 57 women of mean age 19.52 ± 4.3 years (range 12-38). On two scales, pain (P = 0.041) and emotional role (P = 0.009), the women showed significantly lower scores than the men. Lower income, poor compliance with iron-chelating therapy and presence of comorbidities were significantly correlated with lower SF-36 scores. These factors were also found to be determinants of worse SF-36 scores in multivariate analysis. CONCLUSIONS We showed that the presence of disease complications, poor compliance with iron-chelating therapy and poor economic status were predictors of worse QoL among patients with β-TM. Prevention and proper management of disease-related complications, increased knowledge among patients regarding the importance of managing comorbidities and greater compliance with iron-chelating therapy, along with psychosocial and financial support, could help these patients to cope better with this chronic disease state.

scholarly journals Predictors of quality of life among patients on dialysis in southern Brazil

2008 ◽  
Vol 126 (5) ◽  
pp. 252-256 ◽  
Author(s):  
Maristela Bohlke ◽  
Diego Leite Nunes ◽  
Stela Scaglioni Marini ◽  
Cleison Kitamura ◽  
Marcia Andrade ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Peritoneal Dialysis ◽  
Short Form ◽  
Outcome Measurement ◽  
Cross Sectional Study ◽  
Southern Brazil ◽  
Cross Sectional ◽  
Sf 36 ◽  
Dialysis Facilities

CONTEXT AND OBJECTIVE: Quality of life (QoL) is considered important as an outcome measurement, especially for long-term diseases such as chronic renal failure. The present study searched for predictors of QoL in a sample of patients undergoing dialysis in southern Brazil. DESIGN AND SETTING: This was a cross-sectional study developed in three southern Brazilian dialysis facilities. METHODS: Health-related QoL of patients on hemodialysis or peritoneal dialysis was measured using the generic Short Form-36 (SF-36) health survey questionnaire. The results were correlated with sociodemographic, clinical and laboratory variables. The analysis was adjusted through multiple linear regression. RESULTS: A total of 140 patients were assessed: 94 on hemodialysis and 46 on peritoneal dialysis. The mean age was 54.2 ± 15.4 years, 48% were men and 76% were white. The predictors of higher (better) physical component summary in SF-36 were: younger age (β-0.16; 95% confidence interval, CI: -0.27 to -0.05), shorter time on dialysis (β-0.06; 95% CI: -0.09 to -0.02) and lower Khan comorbidity-age index (β 5.16; 95% CI: 1.7-8.6). The predictors of higher mental component summary were: being employed (β 8.4; 95% CI: 1.7-15.1), being married or having a marriage-like relationship (β 4.56; 95% CI: 0.9-8.2), being on peritoneal dialysis (β 4.9; 95% CI: 0.9-8.8) and not having high blood pressure (β 3.9; 95% CI: 0.3-7.6). CONCLUSIONS: Age, comorbidity and length of time on dialysis were the main predictors of physical QoL, whereas socioeconomic issues especially determined mental QoL.

scholarly journals In active acromegaly, IGF1 bioactivity is related to soluble Klotho levels and quality of life

2014 ◽  
Vol 3 (2) ◽  
pp. 85-92 ◽  
Author(s):  
A J Varewijck ◽  
A J van der Lely ◽  
S J C M M Neggers ◽  
S W J Lamberts ◽  
L J Hofland ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Reference Range ◽  
Short Form ◽  
Receptor Activation ◽  
Oral Glucose ◽  
Cross Sectional ◽  
Sf 36 ◽  
Activation Assay ◽  
Active Acromegaly

The value of measuring IGF1 bioactivity in active acromegaly is unknown. Soluble Klotho (S-Klotho) level is elevated in active acromegaly and it has been suggested that S-Klotho can inhibit activation of the IGF1 receptor (IGF1R). A cross-sectional study was carried out in 15 patients with active acromegaly based on clinical presentation, unsuppressed GH during an oral glucose tolerance test, and elevated total IGF1 levels (>+2 s.d.). Total IGF1 was measured by immunoassay, IGF1 bioactivity by the IGF1R kinase receptor activation assay and S-Klotho by an ELISA. Quality of Life (QoL) was assessed by Acromegaly QoL (AcroQoL) Questionnaire and Short-Form-36 Health Survey Questionnaire (SF-36). Out of 15 patients, nine had IGF1 bioactivity values within the reference range. S-Klotho was higher in active acromegaly compared with controls. Age-adjusted S-Klotho was significantly related to IGF1 bioactivity (r=0.75, P=0.002) and to total IGF1 (r=0.62, P=0.02). IGF1 bioactivity and total IGF1 were inversely related to the physical component summary of the SF-36 (r=−0.78, P=0.002 vs r=−0.60, P=0.03). Moreover, IGF1 bioactivity, but not total IGF1, was significantly inversely related to the physical dimension of the AcroQoL Questionnaire (r=−0.60, P=0.02 vs r=−0.37, P=0.19). In contrast to total IGF1, IGF1 bioactivity was within the reference range in a considerable number of subjects with active acromegaly. Elevated S-Klotho levels may have reduced IGF1 bioactivity. Moreover, IGF1 bioactivity was more strongly related to physical measures of QoL than total IGF1, suggesting that IGF1 bioactivity may better reflect physical limitations perceived in active acromegaly.

scholarly journals Childhood mouth-breathing consequences at adult age: ventilatory function and quality of life

2014 ◽  
Vol 27 (2) ◽  
pp. 211-218 ◽  
Author(s):  
Jovana de Moura Milanesi ◽  
Priscila Weber ◽  
Luana Cristina Berwig ◽  
Rodrigo Agne Ritzel ◽  
Ana Maria Toniolo da Silva ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Mouth Breathing ◽  
Walk Test ◽  
Ventilatory Function ◽  
Nasal Breathing ◽  
Cross Sectional ◽  
Adult Age ◽  
Sf 36

Introduction Mouth breathing can affect the functions of the respiratory systems and quality of life. For this reason, children who grow up with this stimulus may have implications on physical and psychological aspects at adult age.Objective To evaluate childhood mouth-breathing consequences for the ventilatory function and quality of life at adult age.Materials and methods Prospective, observational and cross-sectional study with 24 adults, between 18 and 30 years old, mouth breathers during childhood, comprised the childhood mouth-breathing group (CMB). The childhood nasal-breathing (CNB) group was composed of 20 adults of the same age, without history of respiratory disease during all their lives. Measurements of maximal respiratory pressures, peak expiratory flow and 6-minute walk test were assessed. In addition, all the volunteers answered the Short Form-36 questionnaire (SF-36).Results The maximal inspiratory (p = 0.001) and expiratory (p = 0.000) pressures as well as the distance in the walk test (p = 0.003) were lower in the COB. The COB also presented lower score in the General Health domain of the SF-36 Questionnaire (p = 0.002).Conclusion Childhood mouth-breathing yields consequences for the ventilatory function at adult age, with lower respiratory muscle strength and functional exercise capacity. Conversely, the quality of life was little affected by the mouth breathing in this study.

scholarly journals Urinary incontinence and quality of life: a systematic review and meta-analysis

2020 ◽  
Author(s):  
Damiano Pizzol ◽  
Jacopo Demurtas ◽  
Stefano Celotto ◽  
Stefania Maggi ◽  
Lee Smith ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Urinary Incontinence ◽  
Short Form ◽  
Meta Analysis ◽  
Case Control ◽  
Case Control Studies ◽  
Cross Sectional ◽  
Sf 36

Abstract Background Urinary incontinence (UI) and low quality of life (QoL) are two common conditions. Some recent literature proposed that these two entities can be associated. However, no attempt was made to collate this literature. Therefore, the aim of this study was to conduct a systematic review and meta-analysis of existing data to estimate the strength of the association between UI and QoL. Methods An electronic search of major databases up to 18th April 2020 was carried out. Meta-analysis of cross-sectional and case–control studies comparing mean values in QoL between patients with UI and controls was performed, reporting random-effects standardized mean differences (SMDs) ± 95% confidence intervals (CIs) as the effect size. Heterogeneity was assessed with the I2. Results Out of 8279 articles initially screened, 23 were finally included for a total of 24,983 participants, mainly women. The mean age was ≥ 50 years in 12/23 studies. UI was significantly associated with poor QoL as assessed by the short-form 36 (SF-36) total score (n = 6 studies; UI: 473 vs. 2971 controls; SMD = − 0.89; 95% CI − 1.3 to − 0.42; I2 = 93.5) and by the sub-scales of SF-36 and 5/8 of the domains included in the SF-36. Similar results were found using other QoL tools. The risk of bias of the studies included was generally high. Conclusions UI is associated with a poor QoL, with a strong level of certainty. This work, however, mainly based on cross-sectional and case–control studies, highlights the necessity of future longitudinal studies for better understanding the importance of UI on QoL.

scholarly journals Influence of Working Memory on Academic Achievement and Quality of Life in Children with Beta-Thalassemia Major

2019 ◽  
Vol 12 (1) ◽  
pp. 76-83 ◽  
Author(s):  
Uni Gamayani ◽  
Ni Luh Meidha Dini Lestari ◽  
Ahmad Rizal Ganiem ◽  
Ramdan Panigoro
Keyword(s):  
Quality Of Life ◽  
Academic Achievement ◽  
Working Memory ◽  
Digit Span ◽  
Ferritin Level ◽  
Memory Function ◽  
Thalassemia Major ◽  
Beta Thalassemia ◽  
Beta Thalassemia Major

Background: Children with beta-thalassemia major may suffer from working memory impairment. For a more refined understanding of this issue, we assessed working memory function in beta-thalassemia children and evaluated its influence on academic achievement and quality of life. Methods: This was a cross-sectional study involving 60 beta-thalassemia children aged 8-12 years. All participants underwent a working memory assessment using the digit span and were interviewed using academic achievement and Indonesian version of PedsQL 4.0 questionnaires. Working memory in beta-thalassemia children significantly influences their quality of life, both directly (β=0.32) and indirectly, through their academic achievement (β=0.639). Longer duration of transfusion (p=0.01) is significantly related to poorer working memory, while lower hemoglobin level (p=0.81) and higher ferritin level (p=0.24) are not significantly associated with working memory. Conclusion: We concluded that working memory influences the quality of life in beta-thalassemia children, both directly and indirectly, through their academic achievement.

scholarly journals Assessment of quality of life of stroke survivors in a rural area of North Kerala, India

2017 ◽  
Vol 4 (3) ◽  
pp. 841 ◽  
Author(s):  
Priya Chandran ◽  
Dhanya Shenoy ◽  
Jayakrishnan Thavody ◽  
Lilabi M. P.
Keyword(s):  
Quality Of Life ◽  
Rural Area ◽  
Short Form ◽  
Significant Proportion ◽  
Population Based ◽  
Stroke Survivors ◽  
Cross Sectional ◽  
Sf 36 ◽  
Role Limitation

Background: With increase in prevalence of stroke and life expectancy the quality of life of stroke survivors assumes importance. Despite advances in diagnosis and treatment of cerebrovascular accidents the survivors continue to experience low Quality of life (QoL) especially in developing countries. The objective of this study was to assess the quality of life among stroke survivors and the prevalence of depression among them.  Methods: Cross-sectional population based study was conducted in a rural area of North Kerala. Stoke survivors were interviewed at home to assess the quality of life and depression status. QOL was assessed using the Medical Outcomes 36-Item Short-Form Health Survey (SF-36), functional status using the modified barthel index (MBI), and mood using the Beck’s Depression Inventory (BDI).Results: A total of 40 patients (65.5% men, mean age 70.58±10.7 years) were interviewed.  The mean MBI was 55.25±2.79, and the prevalence of unrecognized depression was 90%. 95 percent of patients needed varying degrees of care for their activities of daily living. The SF-36 scores of the patients were considerably lower than that to that of the general population especially in the areas of role limitation and physical functioning. Depression was more among older subjects and Depressed patients had lower MBI scoresConclusions: A significant proportion of stroke survivors continue to face limitations in their physical activities. In addition, majority have unrecognised depression that affects their QOL adversely.

scholarly journals IMPACT OF DIFFERENT LEVELS OF DISEASE ACTIVITY IN PAINFUL PROFILE AND QUALITY OF LIFE IN PEOPLE WITH RHEUMATOID ARTHRITIS

2014 ◽  
Vol 2 (1) ◽  
Author(s):  
Selena Márcia Dubois Mendes ◽  
Bárbara Liliane Lôbo Queiroz ◽  
Larissa Vieira Santana ◽  
Abrahão Fontes Baptista ◽  
Mittermayer Barreto Santiago ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Rheumatoid Arthritis ◽  
Disease Activity ◽  
Pain Perception ◽  
Short Form ◽  
Care Service ◽  
Cross Sectional ◽  
Sf 36 ◽  
Different Levels

Rheumatoid arthritis (RA) is a systemic inflammatory autoimmune disease with impact on increasing the morbidity and mortality rates. Different levels of disease activity (LDA) have been established, however, its impact on pain and quality of life have yet to be been evidenced. The aim of this study was to evaluate the relationship of different levels of disease activity on the painful profile and quality of life (QOL) of patients diagnosed with RA. This was a cross-sectional study, conducted in RA patients attending an Educational Outpatient Care Service in Salvador, Bahia, Brazil. The LDA was defined according to values of Erythrocyte Sedimentation Rate (ESR), Visual Analog Scale (VAS), and number of swollen and sore joints, according to the Disease Activity Score in 28 joints (DAS28). Types of pain were assessed using the Douleur Neuropathique en 4 questions (DN4). To evaluate QOL, the Short Form (36) Health Survey (SF-36) and Health Assessment Questionnaire (HAQ) were applied. The association between LDA, QOL and painful profile was verified using One Way-ANOVA and Bonferroni correction post-test. A high LAD was observed in 67.7% of the 96 patients  evaluated in this study. Pain sensation was reported by 94.8 % of participants with 40.6 % reporting it as nociceptive and 80.2% as intense. It was also observed that the higher LAD found the higher was the pain intensity reported (p=0.001) and lower QOL scores (p<0.001). Although the LDA did not correlate with the type of pain (p=0.611), it was correlated with the total score obtained in the QOL from the HAQ (p=0.001). The greatest impact on QOL evaluated through the SF-36 were physical (p<0.001) and functional capacity (p<0.001). In conclusion, RA patients who had high LDA reported more severe pain perception and obtained the lowest scores in the assessment of quality of life.

scholarly journals Assessment of Sleep among Patients with Chronic Liver Disease: Association with Quality of Life

2021 ◽  
Vol 11 (12) ◽  
pp. 1387
Author(s):  
Oana-Mihaela Plotogea ◽  
Gina Gheorghe ◽  
Madalina Stan-Ilie ◽  
Gabriel Constantinescu ◽  
Nicolae Bacalbasa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Liver Disease ◽  
Chronic Liver Disease ◽  
Sleep Disturbances ◽  
Short Form ◽  
Chronic Liver ◽  
Poor Sleep ◽  
Cross Sectional ◽  
Sf 36

The present study aims to assess the sleep characteristics and health-related quality of life (HRQOL) among patients with chronic liver diseases (CLDs), as well as the relationship between them. We conducted a prospective cross-sectional study, over a period of eight months, on patients with CLDs. Sleep was assessed by subjective tools (self-reported validated questionnaires), semi-objective methods (actigraphy), and HRQOL by using the 36-Item Short Form Survey (SF-36) and Chronic Liver Disease Questionnaire (CLDQ). The results indicated that 48.21% of patients with CLDs had a mean Pittsburgh Sleep Quality Index (PSQI) score higher than five, suggestive of poor sleep; 39.29% of patients had a mean Epworth Sleepiness Scale (ESS) score ≥11, indicative of daytime sleepiness. Actigraphy monitoring showed that patients with cirrhosis had significantly more delayed bedtime hours and get-up hours, more awakenings, and more reduced sleep efficacy when compared to pre-cirrhotics. The CLDQ and SF-36 questionnaire scores were significantly lower in cirrhotics compared to pre-cirrhotics within each domain. Moreover, we identified significant correlations between the variables from each questionnaire, referring to HRQOL and sleep parameters. In conclusion, sleep disturbances are commonly encountered among patients with CLDs and are associated with impaired HRQOL. This is the first study in Romania that assesses sleep by actigraphy in a cohort of patients with different stages of CLD.

Assess Quality of Life of Children with Beta Thalassemia Major

2019 ◽  
Vol 6 (1) ◽  
pp. 121-138
Author(s):  
Amal Ahmed Khalil ◽  
Mohamed Mahmoud Sarhan ◽  
Nagwa Rizk Mohammed ◽  
Neveen Moheb Mohammed Gomah
Keyword(s):  
Quality Of Life ◽  
Thalassemia Major ◽  
Beta Thalassemia ◽  
Beta Thalassemia Major ◽  
Assess Quality

Quality of Life and Satisfaction with Iron Chelation Therapy in Patients with Beta Thalassemia Major: Results from the ITHACA Study.

Blood ◽  
2006 ◽  
Vol 108 (11) ◽  
pp. 3344-3344 ◽  
Author(s):  
Lorenzo Giovanni Mantovani ◽  
Luciana Scalone ◽  
Simona Ravera ◽  
Diana Rofail ◽  
Maria Domenica Cappellini ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Side Effects ◽  
Iron Chelation ◽  
Clinical Effectiveness ◽  
Thalassemia Major ◽  
Beta Thalassemia ◽  
Perceived Effectiveness ◽  
Old Patients ◽  
Sf 36

Abstract Background Patients with beta Thalassemia Major (TM) require life-long blood transfusions, which often cause iron overload that may increase patients’ morbidity and mortality. Iron Chelation Treatment (ICT), aimed to reduce iron overload, is based on 8–12 hour infusions of Deferoxamine (DFO) for 5–7 days/week, and/or Deferiprone (L1) orally administered. Current ICT can be related to low satisfaction, low compliance, and potentially negative consequences on clinical effectiveness, patients’ wellbeing and on healthcare costs. Aims: To investigate the Health-Related Quality-of-Life (HRQoL) of TM patients and their satisfaction with ICT. Methods: The Italian-THAlassemia-Cost-&-Outcomes-Assessment (ITHACA) was a naturalistic multicentre study conducted to evaluate costs, HRQoL, compliance and treatment satisfaction in TM patients undergoing ICT for at least 3 years, enrolled at Italian Thalassemia Care Centers. HRQoL was measured in >14 years old patients with 2 generic instruments: EQ-5D; Short Form-36 (SF-36). To measure satisfaction >12 years old patients received a 28-item instrument consisting of 4 domains: ‘perceived effectiveness’, ‘acceptance’, ‘burden’, and ‘side effects’. Each domain scored from from 1 (very dissatisfied) to 5 (very satisfied). Results Based on 126 patients: median age 29.4 years (12.3–48.5), 49.6% male. At enrolment 48.0% were using DFO, 33.6% L1, 18.4% were treated with DFO+L1. 86.5% of patients had at least one TM-related complication, 13.5% changed treatment regimen at least once in a median of 11.6 months before enrolment. With EQ-5D profile patients reported moderate problems with ‘mobility’ (9.1%), ‘self care’ (0.8%), ‘usual activities’ (23.5%), moderate or severe ‘pain/discomfort’ (60.5%) and ‘anxiety/depression’ (39.5%). Mean EQ-5D-Visual Analogue Scale was 73.0 (30–100). The SF-36 Physical Component Summary mean(SD) score was 47.7(8.4), while the mean score estimated in the Italian general population comparable for age and sex is 53.3; the Mental Component Summary mean(SD) score in TM patients was 45.1(8.8), while the Italian general population mean score was 47.7. Mean satisfaction scores were 4.29 (perceived effectiveness), 3.37 (acceptance), 3.87 (burden), and 3.57 (side effects). Simple linear regression analysis showed that satisfaction with burden (r2=12.6%, p<0.0001), side effects (r2=12.3%, p<0.0001) and acceptance(r2=11.3%, p=0.0001), are positively associated with the adherence item ‘never thinking about stopping medication’ (p<0.0001 in both cases). Conclusions: TM patients on ICT have impaired levels of physical and mental HRQoL. Therapies improving patients’ satisfaction and compliance to ICT may have positive consequences not only on clinical effectiveness but also on overall patients’ well-being.

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