Ignite Creation Date:
2024-05-06 @ 6:50 PM
Last Modification Date:
2024-10-26 @ 2:55 PM
Study NCT ID:
NCT05790980
Status:
NOT_YET_RECRUITING
Last Update Posted:
2023-03-30
First Post:
2023-02-15
Brief Title:
Assessment of Quality of Life in Thalassemic Patients at Assiut University Hospital A Single-center Experience
Sponsor:
Assiut University
Organization:
Assiut University
Study Overview
Official Title:
Assessment of Quality of Life in Thalassemic Patients at Assiut University Hospital A Single-center Experience
Status:
NOT_YET_RECRUITING
Status Verified Date:
2023-03
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
The thalassemias are a group of inherited hematologic disorders caused by defects in the synthesis of one or more of the hemoglobin chains 1 Thalassemia are classified into the alpha α and β thalassemia which contain deficits in α and β globin production respectively αthalassemia are caused by decreased production of alpha-globin chains from chromosome 16 There are 4 types of α thalassemia thalassemia silent carrier thalassemia carrier Hemoglobin H disease thalassemia major Beta-thalassemia are caused by point mutations or more rarely deletions in the β-globin gene on chromosome 11 leading to reduced β or absent β0 synthesis of the β chains of hemoglobin Imbalances of globin chains cause hemolysis and impair erythropoiesis 4-7 β-thalassemia can be classified into Beta Thalassemia major Beta Thalassemia intermedia Beta Thalassemia minor Thalassemia is a chronic disease that presents a range of serious clinical and psychological challenges
The effects of thalassemia on physical health can lead to physical deformity growth retardation and delayed puberty 9 10 Its impact on physical appearance eg bone deformities and short stature also contributes to a poor self-image 10 11 Severe complications such as heart failure cardiac arrhythmia liver disease endocrine complications and infections are common among thalassemia patients 8 12
The effects of thalassemia on physical health can lead to physical deformity growth retardation and delayed puberty 9 10 Its impact on physical appearance eg bone deformities and short stature also contributes to a poor self-image 10 11 Severe complications such as heart failure cardiac arrhythmia liver disease endocrine complications and infections are common among thalassemia patients 8 12
Detailed Description:
The problems mentioned do not only affect patients physical functioning but also their emotional functioning social functioning and school functioning leading to impaired Health-related quality of life HRQOL of the patients 13 QOL is a phrase used to refer to an individuals total wellbeing This includes all emotional social and physical aspects of the individuals life Health-related quality of life HRQOL Moreover the term health-related quality of life HRQOL is often described as A term referring to the health aspects of quality of life generally considered to reflect the impact of disease and treatment on disability and daily functioning it has also been considered to reflect the impact of perceived health on an individuals ability to live a fulfilling life18-19 HRQOL is comprised of a number of dimensions of influence Seven are commonly agreed upon
1 Physical well-being the experience of physical symptoms such as pain dyspnea or nausea
2 Functional well-being the ability to participate in normal daily activities such as work and leisure pursuits
3 Emotional well-being this is comprised of both positive affective states eg happiness peace of mind and negative affective states eg sadness anxiety
4 Family well-being the ability to maintain family relationships and communication
5 Social functioning the ability to participate and enjoy social roles and activities20
6 Treatment satisfaction including financial concerns
7 Sexualityintimacy including concerns about body image
1 Physical well-being the experience of physical symptoms such as pain dyspnea or nausea
2 Functional well-being the ability to participate in normal daily activities such as work and leisure pursuits
3 Emotional well-being this is comprised of both positive affective states eg happiness peace of mind and negative affective states eg sadness anxiety
4 Family well-being the ability to maintain family relationships and communication
5 Social functioning the ability to participate and enjoy social roles and activities20
6 Treatment satisfaction including financial concerns
7 Sexualityintimacy including concerns about body image
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None