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Original Article

Psychosocial Burden in Thalassemia

Atika Khurana, Sudha Katyal and R.K. Marwaha1
Departments of Child Development, Government Home Science College, Chandigarh and 1Department of Pediatrics,
Post Graduate Institute of Medical Education and Research (PGIMER), Chandigarh.

ABSTRACT
Objective. To study the psychosocial life aspects of Indian adolescents suffering from transfusion dependent -thalassemia
major. Earlier studies done in Italy, Greece and United Kingdom reported the presence of psychosocial burden associated with
the disease. We aimed to determine the presence of disease burden in the psychosocial life aspects of Indian adolescents
affected with thalassemia.
Methods. Structured interviews were carried out with each of the subjects using a schedule which contained questions relating
to perceived burden of thalassemia in the various psychosocial life aspects of affected adolescents.
Results. Adverse impact of thalassemia was perceived in the domains of education (70%) and sports (72%). Most thalassemics
were not satisfied with their body image. Almost all the study subjects felt that the disease did not affect their family or social
relationships. The adolescents were anxious about their future health and education. Majority of the subjects(80%) did not
discuss about their disease and its related problems with their friends. They mainly depended on their parents for monetary
and emotional support.
Conclusion. There is tremendous psychosocial disease burden perceived by the affected adolescents, and hence it is
imperative to ameliorate it by promoting a clear understanding of the disease and initiating intervention programs. [Indian J
Pediatr 2006; 73 (10) : 877-880] E-mail : rammarwaha1@rediffmail.com.

Key words : Thalassemic adolescents; Disease burden; Psychosocial life aspects.

Thalassemia, at present, is one of the most challenging

hematological disorder with no permanent cure. Patients
with - thalassemia major need regular blood transfusions
in order to live. The resulting iron overload also requires
chelation therapy. Although optimal medical
management has reduced the difficulties faced by
thalassemics, the psychosocial problems faced by them
are now of primary importance. In developing countries
like India, the main cause of death from thalassemia is
non-compliance with the treatment due to psychosocial
factors.1
The psychosocial burden is perceived even more in the
adolescence stage when the teenager is confronted with
various difficulties like identity formation, developing
intimate relationships and entering the working world.
Accepting and integrating thalassemia into ones identity
becomes a difficult task at this stage.
Thalassemia challenges the individual at the physical,

Correspondence and Reprint requests : Dr. R.K. Marwaha, Professor

of Pediatrics, Advanced Pediatric Center, Postgraduate Institute of
Medical Education and Research (PGIMER), Chandigarh, India
160012. Fax: 91-172-2744401, 2745078, 2749110.

Indian Journal of Pediatrics, Volume 73October, 2006

emotional, cognitive levels and disrupts the quality of

life.2 Its frequent and complex treatment might also lead
to financial burden for the individual and his/her family.
In this communication we bring into focus the
observations made in our study designed to evaluate the
psychosocial burden in adolescents with transfusion
dependent thalassemia.
MATERIAL AND METHODS
The present study was conducted in the Thalassemia
Transfusion Unit of the Division of Pediatric Hematology
- Advanced Pediatric Center, Nehru Hospital,
Postgraduate Institute of Medical Education and Research
(PGIMER), Chandigarh.
Adolescents who fulfilled the inclusion criteria were
enrolled in the study. The criteria were :
(a) established diagnosis of thalassemia; (b) receiving
regular red cells transfusion in the Advanced Pediatric
Center. (c) age range between 12-20 years.
70 adolescents were found to fulfill the above criteria.
From this 50 adolescents (25 males and 25 females) were
randomly selected by draw of lots.
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Atika Khurana et al
The lack of a standardized test tool for assessing the
psychosocial burden in Indian adolescents with
thalassemia prompted us to develop a questionnaire
which would be suitable for use in Indian subjects. The
thalassemia profile questionnaire developed by Ratip and
Modell1 was modified and used as an interview schedule.
Questions on marriage and employment were omitted
and the remaining were reframed to fit the purpose of the
study. The questions were discussed, edited and re-edited
with the help of the guides. For studying all the aspects
objectively and getting in-depth information, both closeended and open-ended questions were included. Openended questions were framed so that the adolescents
were free to express themselves. The questions were kept
simple, unambiguous, free of cultural bias and suited to
the Indian context. The final interview schedule consisted
of 55 questions which assessed the psychosocial life
aspects of thalassemic adolescents under the 9 sub-heads
of education, sports activities, self-image, family
interactions, social interactions, anxiety, feelings of
difference, ways of coping and support services.
(Annexure I )
A pilot study was carried out in a few cases to test the
practicality and feasibility of the interview schedule. On
its basis, appropriate changes were made in the questions
to get clarity of responses. After refining the test tool,
structured interviews were carried out with each of the
study subjects. The interview lasted for about 1-2 hours.
After the data was collected, it was coded and tabulated.
Frequencies and percentages were calculated for each
item on the interview schedule and the response patterns
for male and female adolescents were recorded.
RESULTS
In the domain of education, 35(70%) adolescents

expressed that thalassemia had an adverse impact on

their scholastic performance. They had to take 1-3 days off
from school every month to get their regular red cell
transfusions. The affected adolescents complained that
their academic performance was average or less because
of their disease and its related problems. 62% of the
adolescents reported that they had faced no deprecatory
remarks from their peers or teachers.
Over 2/3rd of the adolescents were unable to engage
in outdoor play at the same level as their peers, because of
physical weakness related to their disease. Indulgence in
sport activities was therefore limited.
68% of the adolescents were not satisfied with their
body image. Almost all of them cited physical
appearances as their major reason of disappointment.
Stunted growth, skeletal abnormalities and delayed
puberty generated a negative self-concept.
In response to the questions pertaining to family
interactions, adolescents with thalassemia had no
problems in family relationships, either with parents or
siblings. They generally discussed their problems and
worries with their parents.
Most of the adolescents (80%) reported that
thalassemia had not affected their social life. However, on
further questioning it was revealed that they preferred the
company of a selected group of close friends rather than
socializing with a larger group of people. Their frequency
of going out was less than once a month.
The adolescents worried about their disease and its
complications. On being questioned about their worries,
they responded that they were mainly concerned about
their future health (56%) and education (34%). Patients
belonging to the lower socio-economic strata had
additional worries related to the financial ramifications of
their therapy.
Their source of strength to cope with the disease was

TABLE 1. Psychosocial Life Aspects in Thalassemic Adolescents

Domain

Number affected
n(%)

Impact of disease

Education

35(70%) expressed that thalassemia had

an adverse impact on education

Leave from school for transfusions; academic performance

hampered due to disease and related problems

Sport activities

Limited indulgence in outdoor play activity

Body image

Over 2/3rd related physical weakness to

their disease
Negative self-concept in 68% thalassemics

Family interactions

No problems

Social life

40(80%) reported no impact on

social life

Disease and complications

All adolescent worried about life

threatening complications
Source of strength in
parents and God

Coping with the disease

Financial and medical

support

878

Low income group (20%) affected, denied

benefits of optimal medical management

Stunted growth, skeletal changes, pigmentation and delayed

puberty generated dissatisfaction with physical appearance
Discussed worries with parents, had harmonious
relations with parents/ siblings
- preferred company of a select group of friends.
- Frequency of an outing was < once a month
Concerned about future health (56%) and education (34%)
- 82% did not discuss their illness with friends
- Lack of trust
- Fear of being ridiculed
The higher income group felt that they had
sufficient funds for optimal therapy

Indian Journal of Pediatrics, Volume 73October, 2006

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Psychosocial Burden in Thalassemia

mainly parents and God. Most of the adolescents (82%)
did not like discussing their illness and its related
problems with their friends as they could not trust them
and feared being ridiculed.
In response to being asked about the need for
additional financial and medical support, adolescents
from the low income group (20%) felt that they were
denied the benefits of optimal medical management
because of lack of financial resources. The rest of the study
cohort felt that they had sufficient funds to ensure
appropriate therapy.
DISCUSSION
The presence of a chronic disease like thalassemia places
tremendous psychosocial burden on the patient and the
family. Improvement in prognosis and modern
treatments have greatly increased the life expectancy of
thalassemics. The need to ameliorate the associated
psychosocial burden thus becomes even more important.
The scarcity of data on the psychosocial life aspects of
thalassemics limits us from implementing proper
intervention strategies. Keeping this in mind, the present
study was designed to define the psychosocial burdens
faced by thalassemic adolescents in their everyday lives.
A structured interview was conducted in a sample of 50
adolescents and the impact of the disease was observed in
main domains like education, sports, family life and social
life.
In the sphere of education, the findings revealed that
thalassemic adolescents perceived an adverse impact of
the disease on their scholastic performance. In a study by
Ratip et al 4 in United Kingdom with 27 thalassemic
subjects, it was observed that 90% of these subjects had to
take time off from school because of their medical
condition. These findings are in consonance with the
observations made by us. In another study of 138
thalassemics, Logitihis et al3 found that the intelligence
quotient of all the thalassemic children was within normal
range.
There is scant available information on how
thalassemia affects sports activities of adolescents. The
study by Ratip et al 4 showed that 86% of the 27
thalassemic patients complained of tiredness and sub
optimal performance in sports. The present study findings
are congruent with these.
Chronic illnesses like thalassemia bring along feelings
of being different and inferior with consequent loss of
self-esteem and increased dependence. Facial
characteristics in thalassemia occur as a consequence of
the expansion of bones particularly the skull and jaw
bones. Anemia and iron overload in these patients often
leads to short stature and delayed puberty. Georganda5
conducted open-ended interviews with five thalassemic
adolescents and reported the impact of the disease on
their self-image. Most of them feared being rejected and
Indian Journal of Pediatrics, Volume 73October, 2006

ridiculed by others because of their looks. In our study,

we found that 45 adolescents(91%) had similar
apprehensions about their physical appearances.
Contrary to the findings by Ratip and Modell 1, who
reported lack of communication and withdrawal of
thalassemics from their families, the adolescents in our
study cohort felt that the disease had little or no impact on
their family relationships. In fact, they liked sharing their
problems and worries with their parents. The possible
reasons for this difference could be that Indian families
tend to be more close knit and the adolescents are
dependent on their parents till later ages for monetary
and emotional support. In a study of Italian adolescents,
the investigators 8 reported that thalassemics remain
dependent on their parents with few friends from the peer
age group.
Anxiety is common among thalassemic adolescents
and those with physical abnormalities are especially
prone to be anxious. Sherman 6 in a study sample of 23
thalassemic children, found poor psychiatric adaptation
with dysphoric moods and low self-esteem in most of
them. In another study of 22 thalassemics, Woo et al. 7
reported that 2/3rd of the patients were worried about
pain, death and the unknown. These findings are similar
to our observations.
It is evident from the findings of our study that besides
the clinical burden, thalassemics have to shoulder high
psychosocial burden associated with the disease. The
disease affects their education and sports life. They are
likely to suffer from reduced self-esteem, feelings of
difference, poor self-image, being dependent and anxiety
over issues such as pain and death.
CONCLUSION
As thalassemia has an impact on the different
psychosocial life aspects of adolescents, it is very essential
to provide psychosocial support, including promotion of
a clear understanding of the disease. Thalassemia support
groups are very important as they not only educate the
patients and their families about the disease but also
provide patients with an opportunity to meet their peers
and participate in social activities.
Psychosocial support may include liaison with teachers
or school authorities who should be informed about the
disease. The adolescents must be allowed to get involved
in normal activities with healthy peers to allow the
development of adequate self-image.
The need for psychosocial support is even higher in a
developing country like India where the regular and
expensive treatment can pose a financial burden as well
for the families of the thalassemics. It is imperative to
focus our attention on psychosocial life aspects of thala
ssemics and initiate intervention programs with a view to
integrate thalassemics into the social mainstream and help
them in leading healthy, creative and fulfilling lives.
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Atika Khurana et al
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Indian Journal of Pediatrics, Volume 73October, 2006