Quality of Life (QOL) in Sickle Cell Disease (SCD).

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1324-1324
Author(s):  
Zahra Pakbaz ◽  
Leah Richards ◽  
Marsha Treadwell ◽  
Ekua Hackney-Stephens ◽  
Keith Quirolo ◽  
...  

Abstract Introduction Assessment of QOL is important for clinicians, as it will allow them to provide the patients with better care. The objective of this study is to assess the QOL in SCD patients. Methods A convenience sample of 34 patients with SCD (50% female) with a mean age of 21 years (SD= 9.4 y), completed a Dartmouth Care Cooperative Chart System (COOP) questionnaire (Table 1) during a comprehensive clinic visit at Children’s Hospital & Research Center in Oakland. High scores (patient ratings of 4 or 5) represent unfavorable levels of health or major limitations. A score of 3 represents moderate impairment while scores of 1 or 2 indicate no impairment. A brief chart review was completed to obtain medical history. Results 60% of the transfused patients (Tx) had severe impairment in at least one domain and this was the case in 71% of non-transfused patients (Non-Tx). As shown in table 2, the most affected domains were different between the two groups of Tx and non-Tx. In non-Tx patients the most affected domains were those of pain, overall health, and social support. In Tx patients, the most affected domains were pain, daily activities, and change in health. Although both groups had a similar amount of pain (non-Tx=42% and Tx=50%), Tx patients reported a better overall QOL (question 9). The most common complications that non-Tx patients suffered from were AVN (71%), vaso-occlusive episodes (46%), acute chest syndrome (46%), pneumonia (17%), reactive airways disease (17%), chest pain (13%), headaches (13%), and sepsis episodes (13%). Data showed that 30% of the Tx patients suffered from strokes previous to start of transfusion. The most common complications found in these patients were acute chest syndrome (30%), reactive airways disease (50%), urinary tract infections (20%), and depression (20%). Conclusions Both transfused and non-transfused SCD patients suffer from serious impairments in QOL. We recommend all SCD patients undergo QOL assessments and intervention which focuses on affected domains. Studies are needed to determine the impact of complications on QOL. Table 1. COOP Questionnaire Q1 Physical Fitness Q2 Feelings Q3 Daily Activities Q4 Social Activities Q5 Pain Q6 Change in Health Q7 Overall Health Q8 Social Support Q9 Quality of Life Table 2. Frequency of moderate to severe impairment of domains Non-Tx Tx Score 3 (%) Score 4/5 (%) Score 3 (%) Score 4/5 (%) Q1 13 25 10 10 Q2 33 25 11 11 Q3 27 1 22 22 Q4 1 1 0 20 Q5 21 42 10 50 Q6 21 17 38 25 Q7 29 33 10 30 Q8 26 30 13 13 Q9 33 17 20 0

2021 ◽  
Vol 14 ◽  
pp. 175628642199399 ◽  
Author(s):  
Annette Wundes ◽  
Sibyl Wray ◽  
Ralf Gold ◽  
Barry A. Singer ◽  
Elzbieta Jasinska ◽  
...  

Background: Diroximel fumarate (DRF) is a novel oral fumarate approved for relapsing forms of multiple sclerosis (MS). DRF demonstrated significantly improved gastrointestinal (GI) tolerability versus dimethyl fumarate (DMF) with fewer days of Individual Gastrointestinal Symptom and Impact Scale (IGISIS) scores ⩾2, GI adverse events (AEs), and treatment discontinuations due to GI AEs. Our aim was to evaluate the impact of GI tolerability events on quality of life (QoL) for patients with relapsing–remitting MS who received DRF or DMF in EVOLVE-MS-2. Methods: A post hoc analysis was conducted in patients who were enrolled in the randomized, blinded, 5-week, EVOLVE-MS-2 [ClinicalTrials.gov identifier: NCT03093324] study of DRF versus DMF. Patients completed daily IGISIS and Global GISIS (GGISIS) eDiary questionnaires to assess GI symptom intensity and interference with daily activities and work. Results: In total, 504 patients (DRF, n = 253; DMF, n = 251) received study drug and 502 (DRF, n = 253; DMF, n = 249) completed at least one post-baseline questionnaire. With DRF, GI symptoms were less likely to interfere ‘quite a bit’ or ‘extremely’ with regular daily activities [IGISIS: DRF, 9.5% (24/253) versus DMF, 28.9% (72/249)] or work productivity [GGISIS: DRF, 6.1% (10/165) versus DMF, 11.3% (18/159)]. DRF-treated patients had fewer days with ⩾1 h of missed work (DRF, 43 days, n = 20 versus DMF, 88 days, n = 26). DMF-treated patients reported highest GI symptom severity and missed work at week 2–3 shortly after completing the titration period, which coincided with the majority of GI-related treatment discontinuations [58.3% (7/12)]. GI tolerability AEs [DRF, 34.8% (88/253); DMF, 48.2% (121/251)], concomitant symptomatic medication use [DRF, 19.3% (17/88) versus DMF, 30.6% (37/121)], and GI-related discontinuations (DRF, 0.8% versus DMF, 4.8%) were lower with DRF versus DMF. Conclusions: The improved GI tolerability with DRF translated into clinically meaningful benefits to QoL, as patients experienced less impact on daily life and work and required less concomitant symptomatic medication use. Trial registration: [ClinicalTrials.gov identifier: NCT03093324]


2020 ◽  
Vol 27 (1) ◽  
Author(s):  
Um-e-Kalsoom ◽  
Sabiha Khan ◽  
Israr Ahmad

Abstract Background Hemodialysis may have serious psychological impact upon patients suffering from chronic kidney diseases. The aim of the present study is to investigate the impact of hemodialysis on the wellbeing of individuals with chronic kidney diseases (CKD). Result A sample consists of (N = 100) CKD patients referred from neurology ward of Leady Reading Hospital Peshawar. Data was collected from both male (50%) and female (50%) in 2017. Participants were divided into two groups on the basis of pre-set criteria. In group I, individuals with 4–5 stage of CKD referred first time for dialysis treatment were recruited. Group II comprised of CKD patients with 1–3 stage. Demographic data sheet, Pakistan Anxiety and Depression, WHO Quality of Life scale, and Perceived Social support scale (PSS) were used to test the hypotheses. Paired sample t test was use to see the difference between pre- and post-analysis of depression, anxiety, QOL, and PSS in group I (experimental group). Results suggests significant difference on depression (p > .001), anxiety (p > .001), and QOL (p > .001), while no significant difference was reported on perceived social support (p <.673). Findings also indicate no significant difference between group I and group II on QOL depression, anxiety, and PSS. Conclusion The findings concluded that patients under hemodialysis treatment suffered from depression, anxiety, and poor quality of life.


2019 ◽  
Vol 53 (3) ◽  
pp. 86-94
Author(s):  
Milena Despotović ◽  
Dragana Ristić-Ignjatović ◽  
Gorica Sbutega-Milošević ◽  
Mile Despotović ◽  
Ljiljana Antić

2015 ◽  
Vol 3 (1) ◽  
Author(s):  
Aristotelis Koinis ◽  
Vasiliki Giannou ◽  
Vasiliki Drantaki ◽  
Sophia Angelaina ◽  
Elpida Stratou ◽  
...  

Workplace stress can influence healthcare professionals’ physical and emotional well-being by curbing their efficiency and having a negative impact on their overall quality of life. The aim of the present study was to investigate the impact that work environment in a local public general hospital can have on the health workers’ mental-emotional health and find strategies in order to cope with negative consequences. The study took place from July 2010 to October 2010. Our sample consisted of 200 healthcare professionals aged 21-58 years working in a 240-bed general hospital and the response rate was 91.36%). Our research protocol was first approved by the hospital’s review board. A standardized questionnaire that investigates strategies for coping with stressful conditions was used. A standardized questionnaire was used in the present study Coping Strategies for Stressful Events, evaluating the strategies that persons employ in order to overcome a stressful situation or event. The questionnaire was first tested for validity and reliability which were found satisfactory (Cronbach’s α=0.862). Strict anonymity of the participants was guaranteed. The SPSS 16.0 software was used for the statistical analysis. Regression analysis showed that health professionals’ emotional health can be influenced by strategies for dealing with stressful events, since positive re-assessment, quitting and seeking social support are predisposing factors regarding the three first quality of life factors of the World Health Organization Quality of Life -BREF. More specifically, for the physical health factor, positive re-assessment (t=3.370, P=0.001) and quitting (t=−2.564, P=0.011) are predisposing factors. For the ‘mental health and spirituality’ regression model, positive re-assessment (t=5.528, P=0.000) and seeking social support (t=−1.991, P=0.048) are also predisposing factors, while regarding social relationships positive re-assessment (t=4.289, P=0.000) is a predisposing factor. According to our findings, there was a notable lack of workplace stress management strategies, which the participants usually perceive as a lack of interest on behalf of the management regarding their emotional state. Some significant factors for lowering workplace stress were found to be the need to encourage and morally reward the staff and also to provide them with opportunities for further or continuous education.


2005 ◽  
Vol 19 (2) ◽  
pp. 150-155 ◽  
Author(s):  
Edgard Michel-Crosato ◽  
Maria Gabriela Haye Biazevic ◽  
Edgard Crosato

The aim of this study was to verify the prevalence of dental fluorosis in schoolchildren aged 6 to 15 and its possible association with the impacts on their daily activities. This study is observational, cross-sectional and analytical. A total of 513 schoolchildren from the city of Pinheiro Preto, SC, took part in this study. The children were examined by three calibrated dentists, after obtaining a kappa > 0.80. To assess the prevalence of fluorosis, clinical examinations were performed according to the methodology set forth by the 4th edition of the WHO. To assess the impact of fluorosis on their daily activities, a modified OIDP (Oral Impacts on Daily Performance) was adopted. The statistical analysis used was the Chi-squared test with a 5% significance level. Of the total number of children examined, 262 (51.1%) were of the female gender and 251 (48.9%) were of the male gender. In regard to the prevalence of fluorosis, 94 (18.3%) of the children presented this condition, while 419 children (81.7%) presented a normal condition. In regard to the severity of fluorosis, few children presented severe alterations. No association was found between dental fluorosis and gender (p = 0.646), between fluorosis and socioeconomic status (p = 0.848) or between fluorosis and access to public water supply system (p = 0.198). The activities that most affected children's daily performance were: oral hygiene (40.9%) and food intake or enjoying food (40.4%). None of the daily activities could be associated with the occurrence of dental fluorosis. The prevalence of dental fluorosis was consonant with the standards found for locations with optimum fluoride content in the water supply. The questionable and very slight levels of fluorosis were the most frequently found, without influence in the quality of life of the schoolchildren participating in the study.


2020 ◽  
pp. 0095327X2091992
Author(s):  
Eric Proescher ◽  
Darrin M. Aase ◽  
Holly M. Passi ◽  
Justin E. Greenstein ◽  
Christopher Schroth ◽  
...  

This study examined the impact of perceived social support on mental health and psychosocial functioning in combat veterans after military deployment, including veterans with post-traumatic stress disorder (PTSD) and veterans with comorbid PTSD and alcohol use disorder. Veterans ( n = 139; female = 23) completed self-report and clinician-administered measures of social support, mental and physical health, functional impairment, and quality of life. The cohort was divided into high, medium, and low perceived social support based on averages of the total score from the Multidimensional Scale of Perceived Social Support. Relative to the low perceived social support group, the high perceived social support group reported fewer symptoms of PTSD, anxiety, and depression. The high perceived social support group also reported a more diverse and embedded social network, less disability, and better quality of life. Of note, the high and low perceived social support groups did not differ on age, gender, education, race ethnicity, or combat trauma exposure. These findings highlight that perceived social support may play an important role in the treatment of postwar veterans as they transition back to civilian life.


2020 ◽  
pp. 174498712094679
Author(s):  
Rapin Polsook ◽  
Yupin Aungsuroch

Background Coronary artery disease is a major cause of morbidity and mortality with high readmission rates. Hospital readmissions for coronary artery disease contribute to rising healthcare costs and are a marker of quality of care. Despite this, prior studies have found that readmission rates vary widely. Aims This study aims to determine the impact of social support, depression, comorbidities, symptom severity, quality of life and readmission among coronary artery disease patients in Thailand. Methods A total of 321 coronary artery disease patients from tertiary care hospitals across all regions of Thailand were recruited for this study. Data were analysed using multiple regression analysis. Results The coefficient for social support (beta = −0.22) was found to be significant ( p < 0.05), whereas comorbidity, symptom severity, depression and quality of life were not significant. Thus, social support was found to be the most significant predictive factor for readmission. Conclusions Accordingly, when designing effective nursing interventions, nurses should promote social support interventions for coronary artery disease patients to improve the quality of care, decrease readmission rates and improve patients' quality of life.


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