Port Said Scientific Journal of Nursing Vol.6, No.

1, June 2019

Assess Quality of Life of Children with Beta Thalassemia Major

Prof. Amal Ahmed Khalil1 prof. Mohamed Mahmoud Sarhan2 Dr. Nagwa
Rizk Mohammed3 Neveen Moheb Mohammed Gomah4
Professor of Pediatric Nursing,Faculty of Nursing,Port Said University1.
Professor of Pediatric Medicine, Faculty of Medicine,Mansoura University2.
Lecturer of Pediatric Nursing,Faculty of Nursing,Port Said University3.
Clinical Instructor at Technical Institute of Nursing, al- Azhar University in
Damietta city4.

ABSTRACT
Background: It is imperative to know further about QOL in children to assess
and improve the care that they receive. Quality of life varies from other forms of
medical assessments in that it emphases on the people's own opinions of their
welfare and other features of life. Aim of study: Assess the quality of life among
children with beta-thalassemia. Design: A descriptive research design was
utilized in this study. Setting: the study was carried out at the outpatient
hematology clinic at Mansoura University children's hospital in Dakahlia
governorate. Sample: the study sample was collected from 124 children with
beta thalassemia major. Results: Almost all the studied children who complied
with blood transfusion had low QOL. Also, the majority compliant with chelation
therapy had low QOL. The studied thalassemic children experienced moderate
QOL related to physical, emotional, and school functioning and experienced high
QOL regarding social functioning. Conclusion: the highest percentage of the
studied children had moderate levels of QOL. There was a statistically significant
association between children's QOL and their knowledge. Moreover, there was a
positive relation between children's ages and their total scores of QOL.
Recommendation: regular and continuous health education programs are
essential for children suffering from beta thalassemia and their mothers.

Key words: Quality of life; beta thalassemia major children.

121
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

INTRODUCTION

Thalassemia is the most common hemoglobin disorder in the world. It is an

inherited disease, where if the parents are carriers or affected, their children will
have high probability of being affected too. Different types of thalassemia lead to
diverse disorders in patients. The most severe form of thalassemia, beta-
thalassemia major, will most likely cause death. Thalassemia is a severe public
health problem in the Mediterranean area, in addition to has no cure (Alam, 2009;
Safizadeh et al., 2012; Raza et al., 2015).

Thalassemia is a major health problem in Egypt where 1–5 million neonates

are anticipated to be affected with this illness, and it is the greatest common
chronic hemolytic anemia (85.1%). A high rate of carriers has been reported in
Egypt ranging from 4–5% reaching up to 9–10% (Shawky et al., 2011;
Shanshory et al., 2014). Thalassemia has an effect on the formation of the
globine chain. Signs symptoms may vary depending on the number and type of
chains involved (Sabry et al., 2009; Safizadeh et al., 2012).

There are physiological changes in the body structures of children with

severe diseases related to hemochromatosis such as growth retardation and
delayed or absent sexual maturation in many adolescents. Moreover, most
children treated with blood transfusion and early chelation therapy survives well
into adulthood. The most common causes of death are heart diseases, post-
splenectomy sepsis, and multi organ failure secondary to hemochromatosis
(Wilson et al., 2011). The treatment strategies of beta-thalassemia major
emphasis on just how to treat its manifestations and chronic complications using
the best current treatment approaches for beta-thalassemia, transfusion therapy,
oral iron chelation therapy, splenectomy, endocrinopathies, cardiac
complications, in addition to hematopoietic stem cell transplantation (Eliezer et
al., 2016).

The transfusion requirements increase with time and children develop iron
overload for which children require chelation (Naggarwal et al., 2011).
Thalassemia has no cure, so the goal of treatment is to normalize the hemoglobin
and hematocrit of the child, thus alleviating the symptoms of severe anemia. This

122
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

is accomplished via a regular schedule of transfusions, with many children

requiring transfusions every 2 to 3 weeks (Potts et al., 2012).

Thalassemic children and adolescents, in comparison with children who

would have short-term injuries, have more depressive symptoms and lower
quality of life (QOL). Also, anxiety, depression, aggression and shyness are
higher in thalassemic children than healthy ones. Moreover, anxiety and
depression were in 47% of the children, this brought about problems in their
self-care and QOL (Borhani et al., 2011). Thalassemia not only affects the
child's physical performance but also the school achievement, emotional in
addition to social aspects (Thavorncharoensap et al., 2010; Kahouei et al.,
2016).

The nurse has a great and important role in management of children with
thalassemia. The nurse plans and carries out the goals of nursing management,
and teaches and supports children and their families about thalassemia to improve
the children's QOL. Moreover, the nurse assists in genetic counseling that leads
to marked decline in the number of new cases of thalassemia worldwide (Wilson
et al., 2011).

Significant of the study:

Children with chronic disease, demonstrated thalassemia, are prone to emotional

and behavioral problems which are reasons of poor quality of their lives (El–
Dakahkny, 2011; Ayoub et al., 2013; Nasiri et al., 2013). Quality of life
studies could be used to supply information about the disease progression
and its impaction children's life . So, there is a need to study the quality
of life for thalassemia children.
AIM OF THE STUDY
The current study aimed to assess the quality of life among children with beta-
thalassemia.
Research question
What is quality of life among children with beta-thalassemia?

123
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

SUBJECTS AND METHOD:-

Research Design:
For proceeding of this study, the descriptive research design was used
Study Setting
Current study carried out at the outpatient hematology clinic at Mansoura
University children's hospital in Dakahlia governorate.
Study Subjects:
Convenience sampling of 124 children with beta-thalassemia major was the
following criteria:
1. Age between 6-18 years.
2. Both sexes.
3. Free from any other chronic disease except complication of beta thalassemia

The process of data collection took a period of nearly two months from 1/2015 to
2/2015.

Data collection tools:

The present study used the following tools:
TOOL (Ι): Arranged Interview schedule Sheet:
This tool was developing by the researcher. It included two parts:
Part I: children demographic characteristics and his parents as, their age, rank,
gender and educational level. Patient characteristics as age, educational level,
occupation, family size and income.

Part II: Medical history about disease history, onset of manifestations, any
similar conditions in the family, child's age at diagnosis of thalassemia.
Part II: Knowledge of children and their mother about thalassemia disease as;
definition, nutrition, activities, frequency of blood transfusions each month,
complying of blood transfusion and chelation treatment.
Children knowledge will be scored as following:
- Correct and complete answer will be scored (2)
- Correct and incomplete answer will be scored (1)
- Wrong answer or don't know and will be scored (0)

124
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

The total score of children knowledge will be calculated and classified into three
levels as following:
 60% will be considered poor knowledge.
 60- 75% will be considered fair knowledge.
 75-100 % will be considered good knowledge.

TOOL (Π): The Pediatric Quality of Life Inventory Version 4.0 by Varni et al.,
(1998 (Appendix Π):
PedsQL; is a modular methodology to assess health- related quality of life (HRQOL)
in kids and teen-agers with acute in addition to chronic health conditions. The
PedsQL was used to measure the QOL for children with beta thalassemia major. This
form assessed: Young children's QOL (ages 6-7), Children's QOL (ages 8-12) and
adolescents' QOL (ages 13-18).

Scoring system
Scoring of studied thalassemic children's knowledge and their mothers:
For each question, right answer recorded (1) while wrong response was scored (0).
For each area of knowledge, the scores of the items were summed and the whole
score split-up by the number of the items, providing a mean score for the part. These
scores were turn into percentage, means and standard deviations were calculated.
Knowledge was reflected satisfactory if the percentage was 50% or more, and
unsatisfactory if < 50%.

Quality of Life (QOL) Scoring System (Varni et al., 1998):

The PedsQL 4.0 generic core inventory subscales were involved of children reports
that comprised ages; (6 to 7) years, (8 to 12) years, and (13 to 18 ) years
(adolescence).

5- Likert scale: 0 for never to 4 for (almost always) for ages 8-12 years and 13- 18
years.
3- Likert scale: 0 for never, 2 (sometimes) and 4 (always) for the young children
aged 6-7 years.

125
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

Items were reverse–scored and linearly distorted to a 0-100 scale as follows:

Items Score
 Never: 100
 Almost never: 75
 Sometimes: 50
 Often: 25
 Almost always: 0
The scores were transform into a percentage, the QOL was shown "high" if
percentage was 60% or more; "moderate" when percentage ranged from 30% to
less than 60%", and "low" if less than 30%.

(II) OPERATIONAL DESIGN

The operational design included content fieldwork, validity & reliability and pilot
study.
Fieldwork:
The process of data collection took a period of nearly two months from
1/2015 to 2/2015. This period consumed for data collection was governed by the
availability of time for both the researcher and the study respondents. An official
permission was taken. The time consumed to interview the child and his/her
parents, the allocated was ''20 - 25 minute''. The appropriate number of children
and accompanying parents per interview was 5. The researcher was available
three days each week, this time was determined according to children's times of
presence in the hospital.

Validity and Reliability:

Tools were developed and its content validity was confirmed by five
pediatric consultants in nursing field. Correlation of reliability for tools
constituted a total scale score of 0.88 child self-report and Cronbach’s Alpha.
Pilot Study:
It was accomplished on 10% of studied children (12 child), to check the
clearness of questions and estimation of the time needed for completing each
sheet. Some modifications were done to the interview questionnaire sheet.

126
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

Ethical considerations
Oral consent from children and their parents was obtained for their
involvement in the study after explanation the purpose of the study and informing
them that all the collected data were confidential and will be used only for the
purpose of the study.

Statistically analyzing of the data:

Data were coded and transferred into specially-designed formats for data
entry, then data were analyzed and computed using the statistical package for social
sciences (SPSS version 16.0), which was used for statistical analysis. The collected
data were organized, categorized, tabulated in tables using numbers, percentage,
mean percentage and standard deviation. Chi-square test applied to test the
relations between studied qualitative variables.

RESULTS:
Figure (1): showed frequency distribution of the study sample ''children with
thalassemia'' regarding to their age, the figure illustrated that more than one third
of the studied thalassemic children (38.7%, and 36.3%) ranged in age from
6<10, and 10<14 years respectively, while the rest of them (25%) were aged
from 14≤18 years with the mean age 10.73 ± 3.61.
Figure (2): cleared studied children`s frequency and distribution regarding to
their genders, also the figure indicated that more than one half of studied children
were females (52%).
Figure (3): illustrating the frequency distribution of the studied thalassemic
children according to their educational levels, it indicated that the highest
percentage of the studied thalassemic children (70.2%) were in primary schools.
Table (1): showed total score QOL dimensions, it indicated that the emotional
functioning recorded the lowermost then the following score was physical
thereafter social and school tasks. Overall, 28.2% of the studied thalassemic
children had low levels of total QOL, while 52.4% had moderate levels.
Table(2): revealed the relationship between studied children`s quality of life and
their commitment of blood transfusion, chelation treatment, activities and suitable
nutrition, it was found that almost all the studied children (97.1%) who
complied with blood transfusion had low QOL. Also, the majority (82.8%)

127
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

compliant with chelation therapy had low QOL. In addition to, statistical
significance relation was found between children's quality of life and their
adherence to suitable nutrition (P ≤ 0001*).
Table (3): showed the correlation coefficient between children`s quality of life
and their age, education, mothers' age and education, and child's knowledge. It
revealed that there was a positive relation between child's age and education, and
their total score of QOL with statistical significance (P= .000, and .021
respectively). On the other hand, there was a negative correlation between
children`s QOL and their knowledge (P= .024).

38.7% Age
40 36.3%
35
30
25%
25
20
15 6<10
10 10<14
5 14≤ 18
0

6<10
10<14
14≤ 18

Figure 1: Frequency distribution of the studied thalassemic children according to

their age

128
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

Gender
48%
52%

Male
Figure 2: Frequency distribution of children with thalassemia who included in
the study regarding to their genders.

Educational Level
70.2%
80
70
60
50
Primary School
40
14.5% 15.3% Prep School
30
20 Secondary School
10
0
Primary Prep School Secondary
School School
Figure 3: Frequency distribution of the studied thalassemic children according to
their educational levels

129
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

Table (1): Frequency distribution of QOL dimensions of studied thalassemic

children (n= 124).

Total QOL level

QOL dimensions: High Moderate Low
No. % No. % No. %
Physical. 52 41.9 51 41.1 21 16.9
Emotional. 20 16.1 63 50.8 41 33.1
Social. 74 59.6 25 20.2 25 20.2
School. 12 9.7 93 75 19 15.3
Total 24 19.4 65 52.4 35 28.2

Table (2): Relationship between study sample quality of life and their adherence
with blood transfusion, chelation treatment, activities and suitable nutrition
(n=124).

Total QOL level

Total
Compliance Moder X
High Low 2 P-value
with: ate
No. % No. % No. % No. %
Blood transfusion:
Compliant. 20 83.3 55 84.6 34 97.1 109 87.9
Incompliant 3.942 .139
4 16.7 10 15.4 1 2.9 15 12.1
.
Chelation therapy:
Compliant. 22 91.7 53 81.5 29 82.8 104 83.9
Incompliant 1.994 .369
2 8.3 12 18.5 6 17.1 20 16.1
.
Activities:
Performing
daily 24 100 54 83.1 29 82.9 107 86.3
activities. 4.729 .094
Not
0 0 11 16.9 6 17.1 17 13.7
performing.
Adherence to suitable nutrition:
Adhered. 3 12.5 3 4.6 11 31.4 17 13.7
Not 13.863 .001*
21 87.5 62 95.4 24 68.6 107 86.3
adhered.
Total 24 100 65 100 35 100 124 100
*Significant P < .05.

131
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

Table (3): Correlation coefficient between children`s quality of life and their age,
education and children's knowledge.

Total child QOL

r Р
Children's age. .318** .000
Children's education. .206* .021
Children's knowledge. -.202 .024

*Significant P < .05

DISCUSSION:

Beta-thalassemia is a lifelong illness which has a devastating impact on children

(Ishfaq, 2016). Children with chronic diseases such as thalassemia require self-
management of their disease in addition to treatment plans to enhance quality of
life (QOL), this may increase compliance, and there by improve children's status
(Baghianimoghadam et al., 2011).

The highest percentage of studied children had moderate and low levels of QOL
regarding emotional functioning, but the lowest percentage of them had moderate
and low QOL regarding social functioning. The results of the present study were
in contrast with Baraz et al. (2015), who studied comparison of quality of life
among youths complaining of beta-thalassemia major and healthy peers, reported
that the mental health had the lowest mean score, while the mean score was high
in social aspects of quality of life in the studied children.
Results of the present study found school functioning score was the highest
followed by social then physical and emotional ones. This finding in congruent
with Elalfy et al. (2014), their study cleared school functioning scores were better
than the physical domain scores as children attended the clinics for blood
transfusions on Saturdays which were the schools' day-off.

It was also observed from the present study that the physical domain had the
lowest scores of total QOL. This was expected to have been due to the

131
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

consequent complications of beta-thalassemia major like cardiac failure that

limited children from making exercises as running and lifting heavy objects. The
present study was also congruent with Torcharus et al. (2011), their study
revealed psychological and social wellbeing scored higher than physical and
emotional functioning. Moreover, the present study contrasted with Mahmoud et
al. (2015), who found that the studied children had low expectations of physical
performance because they have been living with the disease for long time without
the burden of work.

Transferring the blood in addition to chelation therapy considered a backbone in

the managing of beta-thalassemia major. Initial and steady transferring of the
blood declines correlated problems of severe anemia and increase life expectancy
(Ragab et al., 2013). Current study revealed the majority of studied sample who
were compliant with blood transfusion had low QOL. This result could be
interpreted by the fact that the low hemoglobin level leads to a lot of health
problems like tiredness, overall weak, and diminished intellectual awareness
(Hockenberry et al., 2013). Also, there are infections like HCV, HBV, HIV,
malaria, syphilis and HTLV that are transmitted to children through blood
transfusion which leads to low QOL (Naggarwal et al., 2011). The results of this
study were congruent with Thavorncharoensap et al. (2010), their study clarified
that for those who transfused by blood, there were positive relation which was
significantly between children who received blood transfusion and their low
health related quality of life, it might be clarified by children who receiving blood
through 3 months before the health-related quality of life estimation who had
minimum level of hemoglobin before transfusion. Also, Baraz et al. (2015),
revealed the presence of negative relationship between children`s quality of life
in addition to the frequency of blood transfusions.

The present study reported that the majority of studied children were adhered
with chelation treatment. It might have been because short period of intravenous
infusion of desferal. This goes in line with Mazzone et al. (2009), who observed
emotional effect on thalassemia major after psychotherapy for the family in
addition to quality of life of caregivers, and found that the majority of the beta-
thalassemia major children had good compliance with chelation therapy.

132
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

However, current study results were dissimilarity to Haghpanah et al. (2013),

who discovered that children who were strict compliant with chelation treatment
had high quality of life score. In addition, Goulas et al. (2012), mentioned that
children receiving chelation therapy had lower self-esteem and worse physical
scores.

The present study showed positive relation between children age and their total
QOL score. This may have been because the studied children got used to the
presence of the chronic disease while their ages advanced. This finding was
consistent with Dahlui et al. (2009), who clarified this finding due to the children
being able to value health more and realize the limitations of their roles due to the
disease as their ages advanced. Similar to Gupta et al. (2013), who mentioned
that age significantly influenced the QOL, these results were congruent with
Thavorncharoensap et al. (2010), their study revealed that teenager children`s
health related QOL score was higher than the youngest ones.

The present study results were in contrast with Amani et al. (2015), who
clarified that there wasn't significantly correlation between children's age and the
quality of life scores. The current study reported positive relation between
children's education and their QOL score. This may have been due to that
education helps thalassemia children have suitable academic performance that
makes them depend on themselves and socially live without problems. This result
goes in line with Ansari et al. (2014), who mentioned that education had effect
on numerous components quality of life.

CONCLUSION:
The highest percentage of the studied children had moderate levels of QOL.
There was a statistically significance relation between studied children QOL and
their knowledge. Moreover, positive correlation between children ages and their
total QOL score.

133
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

RECOMMENDATIONS:
Health educational programs about thalassemia disease and nursing care are
essential for children with beta thalassemia and their mothers.

Beta thalassemia major education should be maintained through a

multidisciplinary approach over a prolonged outpatient, inpatient, and community
education service plan for beta thalassemia children and their mothers.

REFERENCE :

Alam M. (2009): treatments of thalassemia: Treatments of thalassemia .htm; P. 2 -

4.

Amani F., Fathi A., Valizadeh M., Farazaneh E. and Ardalani G. (2015): Quality
of life among Ardabil patients with beta- thalassemia major:3(11); P. 3310, 3311.

Ansari., Baghersalimi., Azarkeivan., Nojomi. And Rad H. (2014): Quality of life in

patients with thalassemia major: Iranian Journal of Pediatric Hematology Oncology;
4(2);P.57.63.

Ayoub M., Radi S., Azab A. and Karij (2013): Quality of life among children with
beta – thalassemia major treated in western Saudi arabia:34(12); P.1282.

Baghianimoghadam M., Sharifirad G., Rahaei Z., Baghianimoghadam B. and

Heshamati H. (2011): Health related quality of life in children with thalassemia
assessed on the basis of sf- 20 questionnaire in Yazd, Iran: A case- control study:19
(3); P. 102.

Baraz S., Miladinia M. and Mousavinouri E. (2015): A comparison of quality of

life between adolescences with beta thalassemia major and their healthy peers:4(1);
P.11090 - 1204.

134
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

Borhani F., Kargar M., Najafi., Rabori E. and Sabzevari S (2011): the effect of
family -centered empowerment model on quality of school- aged children with
thalassemia major: Original Article: 16(4); P.293.

Dahlui., Hishamshah., Rahman. And Aljunid (2009): Quality of life in transfusion

–dependent thalassemia patients on desferrioxamine treatment: Original article: 50
(8);P. 798. 799

Elalfy M., Farid M., Labib J. and Rezkallah H. (2014): Quality of life of Egyptian
b-thalassemia major children and adolescents : Egyptian journal of hematology:39(4)
P. 222-226.

El Dakhakny A., Hesham M., Mohamed S. and Mohammed F (2011): Quality of

life of school age thalassemia children at zagazig city: Journal of American
science: 7(1); P.186.

Eliezer A., Rachmilewitz . and Giardia P. (2016) : How I treat thalassemia:

www.bloodjournal.org :61(3); P. 3479.

Goulas V., Symeonidis A. and Camoutsis C. (2012): comparative effects of three

iron chelation therapies on the quality of life of Greek patients with honozyges
transfusion- dependent beta – thalassemia : ISRN hematology: 32(9); P.7.8.

Gupta M. and Jindal R. (2013): Quality of life in patients with thalassemia:

International journal of science and research (IJSR): 5(5); P. 42.

Haghpanah S., Nasirabadi S., Ghaffarpassand F., Karami R., Mahmoodi M.,
Parand S. and Karim M. (2013): Quality of life among Iranian Patients with beta-
thalassemia major using the sf- 36 questionaire: Original article:131(3); p.323.

Hockenberry M. and Wilson D (2013) : Essentials of pediatric nursing, the children

with hematologic or immunologic dysfunction, 9th ed. United states of America.
Elsevier Mosby:11(1); P. 869.

135
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

Ishfaq K. (2016): Psycho- social and economic impact of thalassemia major on

patients families :https: // www.researchgate .net / publication 303812528 – psycho-
social and economic impact of thalassemia major:12(8); P. 26.

Kahouei M., Kazemzadeh F., Zadeh J. and Ahmadi Z. (2016): Hierarchy of Iranian
parents information needs and social seeking behavior of infants suffering blood
disease: the social sciences:31(6); P. 336.

Mahmoud M. (2015): better understanding of health related quality of life in

thalassemia patients related by iron chelation therapy in the united Arab
emirates:63(8); P. 49.

Mazzone L., Battagial L., Andreozzi F., Romeo M. and Mazzone D. (2009):
Emotional impact in β- thalassemia major children following cognitive –behavioural
family therapy and quality of life of caregiving mothers: PMC, clinical practice &
epidemiology in mental health:12(8); P. 3,4.

Mohammed F. (2010): Quality of life of school age thalassemic children at Zagazing

city, review of literature, pathophysiology of thalassemia syndrome:55(1); P.14.

Naggrawal A., Arorams A., Dewan P. and Harish K. (2011): Essential pediatric
nursing: 3rd , India, CBS publishers α ,distributors PVT. LTD, P.P; 447, 448,449,
450, 451.

Nasiri M., Hosseini S. and Shahmohammadi S. (2014): Mental health status in

patient with thalassemia major in Iran: Journal of pediatrics review2(1); P.55.

Potts N. and Mandleco B. (2012): Pediatric nursing caring for children and their
families, 3rd ed. Australia: Delmar:12(1); P. 926.927.928.

Ragab L., Hamdy M., Shaheen I. and Yassin R. (2013): Blood transfusion among
thalassemia patients: A single Egyptian center experience: Asia journal of
transfusion science:7(1); P.33-36.

136
 Port Said Scientific Journal of Nursing Vol.6, No. 1, June 2019

Raza S., Ishfag K. and Fazal H. (2015): social impact of thalassemia major on
patients families: 2(3); P.413.

Sabry, Salama (2009): Cognitive abilities, mood changes and adaptive functioning
in children with B-thalassemia:43(7); P. 245.

Safizadeh H., Farahmandinia Z., Soltaninejad S., Pourdanghan N. and Araste M.

(2012): Quality of life in patient with thalassemia major and intermedia in kerman-
iran : Mediterranean journal of hematology and infectious disease: 4(1) ; P.4.5.

Shanshory M., Hagag., sheble., AbdElhamed., Abd El- Bar., Al- Tonbary.,
Mansour., Hassan., Hamdy., Alfy., Sherief. and Sharaf, (2014) : spectrum of beta
globin gene mutations in Egyptian children with B- thalassemia: Mediterranean
journal of hematology and infectious disease:11(8); P. 2.

Shawky R. and Kamal T. (2011): Thalassemia intermedia: An overview, Egyptian

journal of medical human genetics science direct:13(3) P. 245- 255.

Thvorncharoensap M., Torcharus K., Nuchpryoon I., Riewpaiboon A., Indaratna

K. and ubol B. (2010): Factor affecting health- related quality of life in children
with thalassemia, B C blood disorders http:www. Blomedcentral.com 1471-226
10 1:10(1); P. 2.3.

Torcharus K. and Pankaew T. (2011): Health related quality of life in

thaithalassemic children treated with iron chelation:42(4); P.953.

Varni J., Burwinkle T., katz e., Meeske K. Dickinson P (1998): The peds Q2 in
pediatric cancer : reliability and validity of pediatric quality of life inventory
generic core scales, multidimensional fatigue scale, and cancer module: 94 ed; p
2090- 2106.

Wilson D. and Hockenberry M. (2011): Nursing care of infants and children, 9th ,
china, Elsevier; P.1436, 1437, 1438, 1439.

137
 ‫‪Port Said Scientific Journal of Nursing‬‬ ‫‪Vol.6, No. 1, June 2019‬‬

‫الـــخـــالصـــة‬

‫حىفيش اىشعايت األٍثو عْصش حيىي فً ححسيِ جىدة حياة االطفاه اىَصابيِ بأّيَيا اىبحش‬
‫اىَخىسظ (اىثالسيَيا)‪ ،‬فقذ حقذٍج ىألحسِ باىَىاظبت عيً ّقو اىذً واىخخيص ٍِ ّسبت اىحذيذ اىزائذة اىْاحجت‬
‫عِ حنشاس ّقو اىذً‪ .‬وىزىل أجشيج هزٓ اىذساست بهذف حقييٌ جىدة حياة االطفاه اىَصابيِ بأّيَيا اىبحش‬
‫طفو ٍصاب بأّيَيا اىبحش اىَخىسظ‬ ‫اىَخىسظ (اىثالسيَيا)‪ ،‬حيث أجشيج هزة اىذساست عيً ‪124‬‬
‫(اىثالسيَيا) فً سفقت رويهٌ فً عيادة أٍشاض اىذً فً ٍسخشفً األطفاه اىجاٍعً فً اىَْصىسة بَحافظت‬
‫اىذقهييت‪ .‬حٌ جَع اىبياّاث باسخخذاً اداحيِ‪ ،‬األوىً حشَو ٍعيىٍاث عِ اىطفو اىَصاب بأّيَيا اىبحش‬
‫اىَخى سظ (اىثالسيَيا)‪ ،‬واىثاّيت عِ جىدة اىحياة ىألطفاه (االصذاس اىشابع)‪ .‬وقذ أسفشث ّخائج اىذساست أُ‬
‫جىدة حياة األطفاه اىَصابيِ بأّيَيا اىبحش اىَخىسظ (اىثالسيَيا) ماّج ٍخىسطت بَقذاس ‪،٪51.8 ،٪41.1‬‬
‫‪ ٪75.1‬ىيىظيفت اىبذّيت واىعاطفيت واىَذسسيت عيً اىخىاىً‪ .‬بيَْا حققج اىحياة االجخَاعيت جىدة حياة عاىيت‬
‫بَقذاس ‪ .٪ 59.6‬عالوة عيً رىل‪ ،‬ماّج هْاك عالقت راث دالىت احصائيت بيِ جىدة حياة االطفاه وٍعيىٍاحهٌ‬
‫(‪ .)P = ,*124‬وأوصج هزٓ اىذساست بضشوسة وجىد اىَزيذ ٍِ اىبشاٍج اىخعييَيت اىصحيت اىَْظَت‬
‫واىَسخَشة اىخً حقذً اىَعيىٍاث واإلسشاداث عِ ٍشض أّيَيا اىبحش اىَخىسظ (اىثالسيَيا) ىألطفاه اىَصابت‬
‫بهزا اىَشض ورويهٌ‪.‬‬

‫الكلمات المرشدة ‪ :‬جىدة اىحياة ‪ ،‬أطفاه ٍصابت بأّيَيا اىبحش اىَخىسظ ‪.‬‬

‫‪138‬‬