scholarly journals Health-Related Quality of Life, Treatment Satisfaction, Adherence and Persistence inβ-Thalassemia and Myelodysplastic Syndrome Patients with Iron Overload Receiving Deferasirox: Results from the EPIC Clinical Trial

Anemia ◽  
2012 ◽  
Vol 2012 ◽  
pp. 1-10 ◽  
Author(s):  
John Porter ◽  
Donald K. Bowden ◽  
Marina Economou ◽  
Jacques Troncy ◽  
Arnold Ganser ◽  
...  

Treatment of iron overload using deferoxamine (DFO) is associated with significant deficits in patients' health-related quality of life (HRQOL) and low treatment satisfaction. The current article presents patient-reported HRQOL, satisfaction, adherence, and persistence data fromβ-thalassemia (n=274) and myelodysplastic syndrome (MDS) patients (n=168) patients participating in the Evaluation of Patients' Iron Chelation with Exjade (EPIC) study (NCT00171821); a large-scale 1-year, phase IIIb study investigating the efficacy and safety of the once-daily oral iron chelator, deferasirox. HRQOL and satisfaction, adherence, and persistence to iron chelation therapy (ICT) data were collected at baseline and end of study using the Medical Outcomes Short-Form 36-item Health Survey (SF-36v2) and the Satisfaction with ICT Questionnaire (SICT). Compared to age-matched norms,β-thalassemia and MDS patients reported lower SF-36 domain scores at baseline. Low levels of treatment satisfaction, adherence, and persistence were also observed. HRQOL improved following treatment with deferasirox, particularly amongβ-thalassemia patients. Furthermore, patients reported high levels of satisfaction with deferasirox at end of study and greater ICT adherence, and persistence. Findings suggest deferasirox improves HRQOL, treatment satisfaction, adherence, and persistence with ICT inβ-thalassemia and MDS patients. Improving such outcomes is an important long-term goal for patients with iron overload.

2018 ◽  
Vol 25 (4) ◽  
pp. 140-151
Author(s):  
Markus A. Wirtz ◽  
Matthias Morfeld ◽  
Elmar Brähler ◽  
Andreas Hinz ◽  
Heide Glaesmer

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.


Diabetes ◽  
2019 ◽  
Vol 68 (Supplement 1) ◽  
pp. 1020-P ◽  
Author(s):  
KARI T. UUSINARKAUS ◽  
HELENA W. RODBARD ◽  
LUC VAN GAAL ◽  
JOHN P. WILDING ◽  
THOMAS HANSEN ◽  
...  

Author(s):  
Rena Maimaiti ◽  
Zhang Yuexin ◽  
Pan Kejun ◽  
Maimaitaili Wubili ◽  
Christophe Lalanne ◽  
...  

In total, 679 HIV-positive patients from 4 clinics in Urumqi city were given structured questionnaires by the doctors or nurses treating them. Health-related quality of life (HRQL) was assessed using the Chinese Patient-Reported Outcome Quality of Life-HIV questionnaire versions in Mandarin and Uyghur. This tool has been used in other parts of China and several countries. Compared to France, Australia, United States, Brazil, Thailand, Cambodia, Senegal, and Central-Southern China (CS China), the HRQL was significantly lower among HIV-positive patients in Xinjiang, with regard to the dimension of treatment impact and general health score. The health concern was similar to Brazil and Cambodia but lower than other countries and CS China. Our findings showed high stigmatization: 86% of the patients were afraid to tell others they were HIV positive and 69% often felt or always felt depressed. Only 1% of the patients were on antidepressant treatment.


2021 ◽  
Vol 264 ◽  
pp. 394-401
Author(s):  
Mary Kate Luddy ◽  
Rachel Vetter ◽  
Jessica Shank ◽  
Whitney Goldner ◽  
Anery Patel ◽  
...  

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