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.

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.

Quality of life during the first 6 months of interferon-b treatment in patients with MS

2000 ◽  
Vol 6 (5) ◽  
pp. 338-342
Author(s):  
J HA Arnoldus ◽  
J Killestein ◽  
L EMA Pfennings ◽  
B Jelles ◽  
B MJ Uitdehaag ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Side Effects ◽  
Physical Functioning ◽  
Bodily Pain ◽  
Significant Linear Trend ◽  
Role Physical ◽  
Sf 36 ◽  
The Impact

Objectives: To determine the quality of life (QoL) of MS patients during the initial 6 months of treatment with interferon-b (IFN-b). Furthermore, to determine whether changes in QoL relate to disability, emotional state, therapeutic expectations or side effect profile. Background: IFN-b has been shown to have beneficial effects on the course of MS. Since the aim of IFN-b treatment is not to cure but to slow down the disease it is important to know how this treatment affects QoL. Surprisingly, the impact of treatment with IFN-b on QoL measures has not been extensively studied so far. Methods: Case report documentation, including EDSS, SF-36 and MADRAS scores, of 51 relapsing-remitting MS patients treated with IFN-b was obtained at baseline and at months 1, 3 and 6. Patients also filled in a form about their expectations of therapy and a questionnaire on side effects. Results: During treatment there was a significant linear trend indicating improvement in the role-physical functioning (RPF) scale of the SF-36 (F1,50=4.9, P=0.032). A transient decrease at month 1 was found in the scale for bodily pain, indicating more experienced pain (F1,50=19.8, P50.001). Subgroup analysis showed that patients with most depressive symptoms on the MADRAS at baseline contributed most to the increase in RPF scores over time (F1,24=5,6 P=0.026). Furthermore, we found associations between adverse event scores and several domains of QoL. Conclusions: Our findings suggest that IFN-b therapy has an impact on QoL of MS patients in that it improves role-physical functioning and transiently worsens experienced bodily pain. QoL during treatment with IFN-b is influenced by depressive symptoms at baseline as well as by treatment-associated side-effects.

EFFECTS OF BIOLOGICAL THERAPY ON QUALITY OF LIFE AND PSYCHOEMOTIONAL STATUS OF PATIENTS WITH ULCERATIVE COLITIS

2021 ◽  
Vol 74 (10) ◽  
pp. 2610-2613
Author(s):  
Antonina V. Varvarynets
Keyword(s):  
Quality Of Life ◽  
Ulcerative Colitis ◽  
Biological Therapy ◽  
Old Patients ◽  
Group Iii ◽  
Group I ◽  
Sf 36 ◽  
Nonspecific Ulcerative Colitis ◽  
Social Introversion

The aim: To compare the effects of tofacitinib, adalimumab and budesonide on the quality of life and psychoemotional status of patients with moderate UC. Materials and methods: The study included 104 patients with moderately severe UC aged between 18 and 75 years old. Patients were divided into 3 groups. Group I consisted of patients with UC treated with budesonide 9 mg 1 g / d (BUD; n = 34). Group II – of patients receiving adalimumab at an initial dose of 160 mg and 80 mg at week 2, followed by maintenance dose of 40 mg weekly (ADA; n = 38) and group III, who received tofacitinib 10 mg 2p / d (TOF; n = 32). Evaluation of quality of life and psycho-emotional status of patients was performed using IBDQ, SF-36 and MMRI questionnaires. Results: According to the IBDQ-questionnaire, all groups after treatment had a statistically significant increase in their results: BUD (from 146,44 ± 2,23 to 151,36 ± 2,40), ADA (from 144,28 ± 3,10 to 172,36 ± 3,12), TOF (from 149,22 ± 2, 86 to 184.36 ± 2.88), respectively, p <0.05. Also, after treatment statistically significant changes were seen in patients of all groups in regards to the psychological and physical components of the SF-36 scale. Analysis of the personality profile using MMRI of all groups of patients showed a change in scales 2 (depression), 3 (hysteria), 5 (tenderness-femininity), 6 (paranoia) and 0 (social introversion), which significantly improved in the ADA and TOF groups. Conclusions: Tofacitinib and adalimumab in patients with nonspecific ulcerative colitis of moderate severity had a better effect on quality of life and psychoemotional status compared with budesonide treatment.

scholarly journals CURING HEMOGLOBINOPATHIES: CHALLENGES AND ADVANCES OF CONVENTIONAL AND NEW GENE THERAPY APPROACHES.

2019 ◽  
Vol 11 (1) ◽  
pp. e2019067 ◽  
Author(s):  
Irene Motta ◽  
Valentina Ghiaccio ◽  
Andrea Cosentino ◽  
Laura Breda
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Gene Therapy ◽  
Bone Marrow ◽  
Iron Chelation ◽  
Beta Thalassemia ◽  
Allogenic Bone ◽  
Number Of Patients ◽  
Monogenic Diseases

Inherited hemoglobin disorders, including beta-thalassemia (BT) and sickle-cell disease (SCD) are the most common monogenic diseases worldwide, with a global carrier frequency of over 5%. With migration they are becoming more common worldwide, making their management and care an increasing concern for health care systems. BT is characterized by an imbalance in the α/β-globin chain ratio, ineffective erythropoiesis, chronic hemolytic anemia, and compensatory haemopoietic expansion. Globally, there are over 25,000 births each year with transfusion-dependent thalassemia (TDT). The current available treatment for TDT is lifelong transfusions and iron chelation therapy or allogenic bone marrow as curative option. SCD affects 300 million people worldwide  and severely impacts the quality of life of patients, who experience unpredictable, recurrent acute and chronic severe pain, stroke, infections, pulmonary disease, kidney disease, retinopathy, and other complications. While survival has been dramatically extended, quality of life is markedly reduced by disease- and treatment-associated morbidity. The development of safe, tissue specific and efficient vectors, and efficient gene editing technologies have led to the development of several gene therapy trials for BT and SCD. Yet, the complexity of the approach presents its hurdles. Fundamental factors at play include the requirement for myeloablation on a patient with a benign disease, the age of the patient and consequent bone marrow microenvironment. A successful path from proof-of-concept studies to commercialization must render gene therapy a sustainable and accessible approach for a large number of patients. Furthermore, the cost of these therapies is a considerable challenge for the health care system. While new promising therapeutic options are emerging and many others are on the pipeline5, gene therapy can potentially cure patients. We herein provide an overview of the most recent potentially curative therapies for hemoglobinopathies and a summary of the challenges that these approaches entail.

Assessment of quality of life in over-80 patients undergoing cardio-surgery: Is it feasible?

2011 ◽  
Vol 26 (S2) ◽  
pp. 377-377 ◽  
Author(s):  
G. Pontoni ◽  
S. Ferrari ◽  
D. Gabbieri ◽  
I. Pedulli ◽  
D. Gambetti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Therapeutic Option ◽  
Well Being ◽  
Old Patients ◽  
Cardiac Symptoms ◽  
Sf 36 ◽  
Socially Relevant ◽  
The One

IntroductionCardiovascular disorders are the first cause of death among over-80 year-old patients and cardio-surgery is sometimes the one therapeutic option. No scientific assessment of Quality of Life (QoL) or other psycho-socially relevant consequences has been carried out. Aim of the study was to quantify and describe QoL on over-80 patients after cardio-surgery.MethodsStudy 1 was a one-arm cohort study on 192 subjects who underwent cardio-surgery between years 2003 and 2005 and were interviewed by phone 5 to 7 years after by means of SF-36 and the Seattle Angina Questionnaire, matching these with socio-demographics and clinical pre/post operative variables. Study 2 was a pre-post study on 21 subjects who underwent cardio-surgery in 2009-2010, who were interviewed face-to-face before the interventions and 6 months after, including assessment of anxiety and depression via the HADS.ResultsStudy 1 patients reported satisfaction with treatment in 80%, freedom from cardiac symptoms in 62% and overall well-being in 78% of cases. Study 2 patients reported statistically significant improvement of QoL (SF-36 mean total score 57.1 vs. 73.5, p = .001), clinical conditions and anxiety-depressive symptoms (p = .001 both for HADS-anxiety and HADS-depression).ConclusionsAssessment of QoL and anxiety-depressive symptoms should be included in routine evaluation of elderly surgical patients, though the present study also suggested the need for improvement of methodology of interview, being phone-calling and traditional self-assessment psychometric instruments particularly inappropriate for this patient population.

Effects of Use of Alternative Therapies on Quality of Life and Healthcare Spending

2007 ◽  
Vol 35 (02) ◽  
pp. 183-193 ◽  
Author(s):  
James X. Zhang ◽  
Jean Woo ◽  
Wallace C. S. Lau ◽  
Polly Lee ◽  
Peter Chiu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hong Kong ◽  
Side Effects ◽  
Health Spending ◽  
Healthcare Spending ◽  
Alternative Therapies ◽  
Personal Healthcare ◽  
Sf 36 ◽  
Out Of Pocket Payments

Osteoarthritis (OA) is a costly disease that causes much morbidity and mortality in the world, and it was the sixth leading cause of disability in developed countries. We aim to study the utilization pattern of alternative therapies and their effects on quality of life and personal health spending in Chinese OA patients in Hong Kong. Five-hundred forty-seven patients with OA from four regional hospitals in Hong Kong were recruited, and we measured various types of alternative therapies, SF-36 scales, an overall Health Utility Index derived from a pre-scored multi-attribute classification system based upon SF-36 health surveys, health spending per person and out-of-pocket payments and side-effects. The study shows that out of the 547 OA patients, the patients have used a wide spectrum of alternative therapies and often used a multiplicity of them. Payment for alternative therapies constitutes 5% of the overall personal healthcare spending, and 29% of the out-of-pocket payments. The use of alternative therapies was significantly associated with higher personal healthcare spending ( p = 0.01), after adjusting for socioeconomic variables, years of OA and severity of OA. The use of alternative therapies was not significantly associated with an improvement in the quality of life in the regression analysis ( p = 0.64). The use of alternative therapies was statistically significant associated with the side effects, including gastric discomfort and gastric ulcer/bleeding ( p = 0.04, 0.02, respectively). Alternative therapies were used extensively by OA patients in Hong Kong. Clinicians, health policy makers, and insurance carriers should be aware of the potential health and economic effects in practice and policy formulation.

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 QUALITY OF LIFE AS A FACTOR OF CLINICAL EFFECTIVENESS OF ANTIHYPERTENSIVE THERAPY IN YOUNG MEN

2013 ◽  
Vol 19 (2) ◽  
pp. 164-170
Author(s):  
O. Y. Sinenkova ◽  
D. V. Kolomeets
Keyword(s):  
Quality Of Life ◽  
Antihypertensive Therapy ◽  
Young Men ◽  
Clinical Effectiveness ◽  
Life Assessment ◽  
Quality Of Life Assessment ◽  
Sf 36

Objective.To evaluate the quality of life by questionnaire SF-36 in young men of military age.Designand methods.The MOS SF-36 was used in 148 young men of military age (aged from 18 to 27 years old) for quality of life assessment.Results and conclusion.Quality of life in hypertensive subjects was worse than in healthy ones. Quality of life signifi cantly increased in most subjects after 24 weeks of antihypertensive therapy.

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