Thalassemia
is a genetical blood disorder in which the body makes an atypical form of
haemoglobin. Haemoglobin is the protein molecule in red blood cells that transmits
oxygen towards the blood. When there is not adequate haemoglobin in the blood
then body doesn’t function properly due to the deficit of oxygen into the
blood.

The
thalassemia results in extreme collapse of red blood cells that cause lack of
red blood cells into the blood, which leads to anaemia. Anaemia is a state in which body doesn’t yield enough healthy red
blood cells and that’s why an individual needs blood from another individual to
function daily life activities.

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Thalassemia
is heritably, meaning that at least one of your parents must be a transporter
of the disease. It’s caused by either a genetic transmutation or an omission of
certain key gene wreckages. If one parent has thalassemia minor and other
partner also has thalassemia minor so in that case the child gets thalassemia
major.

Thalassemia
is a complex group of diseases that are relatively rare in the United States
but common in South and Southeast Asia. Internationally, there are 350,000
births per year with serious hemoglobinopathies (blood disorders).

Thalassemia
minor is a less serious form of the disorder. There are two main forms of
thalassemia that are more serious. In alpha thalassemia, at least one of the
alpha globin genes has an irregularity. In beta thalassemia, the beta globin genes are abnormal.

Quality of life (QOL) is a broad multidimensional
idea that usually have perspective of positive and negative characteristics of
life. The WHO defines quality of life (QOL) as “an
individual’s insight of their situation in life in the framework of the culture
and value systems in which they live and in relation to their goal line, opportunities,
morals and apprehensions. It is a concept that affects person’s physical capability,
psychosomatic well-being, personal beliefs, social relationships and their
relationship with others in their environment.

 Assessing quality of life makes it possible
to measure disease load and can be used to help to regulate risk factors that
may lead to poor quality of life among thalassemia patients.

                                               
Literature Review

Thalassemia
is a long-lasting disease that presents a serious clinical and psychological
problems. The effect of thalassemia on physical health can lead to physical distortion,
growth delay, and delayed sexual maturity. Its influence on physical
appearance, e.g., bone malformations and short physique, also subsidises to a
poor self-image. Severe problems such as heart failure, cardiac arrhythmia,
liver disease, endocrine hitches, and infections are common among thalassemia patients.
The problems that were stated do not only affect patients’ physical functioning
but also their demonstrative functioning, social functioning and school
functioning, leading to decreased health-related quality of life (HRQOL) of the
patients. (Acta Haematol.2002).

Some
studies demonstrated that 80% of thalassemia major patients least suffer from
one psychiatry disorder such as depression and anxiety. Depression and anxiety
are very common in thalassemia patients (Mikelli A,2004).

 One such study often mentioned adverse
response overprotection and overdependency by parents. The thalassemia patients
are so weak so they are totally dependent on some other person such as mother,
father, siblings and other family member for their work. So, in that case they want
others and its management tend to prolong dependence of the patient on family
care and demonstrative support. Parental anxiety may lead to restraint activities
of the child or teenagers, incompatible with the tendency toward self-sufficiency
(Minerva Pediatr,2002).  Most studies inclined
to highlight the psychosocial side of coping with thalassemia, but clearly the disorder
itself and its treatment have a major effect on Quality of Life. A recent study
on adults with thalassaemia suggests that treatment and cultural differences
did not have a major effect on the Quality of life in Cypriot thalassaemia
patients (Telfer P et Collegues,2005).

According
to Messina and its colleagues, in their study about the young adults of
thalassemia patients initiate that the self-image was characterized by poor
feeling and helplessness; the quality of life presented that the emotional role
and social function were significantly low in all the areas; that thalassemia
patients showed a personality categorized by somatization, depression and obsessive-compulsive
traits (Messina et collegues,2008).

According
to some studies, patients with thalassemia had expressively lower quality of
life in comparison with the older patients and those with more disease difficulties
reported the lowest quality of life. Mednick and its colleagues institute that
32% of patients with thalassemia were suffering symptoms of anxiety and 11% suffering
symptoms of depression, these symptoms were noted in the older patients extremely.
These reports have facilitated to provide an alertness of chronic health
conditions and its impact on everyday life. However, the study was made to perceive
the comorbidity of pain and its effects on quality of life, as well as lifetime
accomplishments of education, employment and marital status of thalassemia
patients(Mednick,2012).

There were insufficient
practical data that describe the psychological experience of adult patients, up
to 50 years. In accumulation, there were few studies that have included in the evaluation,
some projective method, credibly due to the difficulty of applying
psychological and compound analysis of personality in these patients.