Health-related quality of life and associated factors among patients with beta thalassemia attending three government hospitals in Selangor, Malaysia
Beta thalassemia is the most prevalent of all human genetic disease. In Malaysia, 600,000 carriers of beta thalassemia were reported. Each year, between 150 and 350 babies were born with beta thalassemia which mainly was Malay and Chinese. There were also about 5,600 blood transfusion dependen...
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| Format: | Thesis |
| Language: | English |
| Published: |
2011
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| Subjects: | |
| Online Access: | http://psasir.upm.edu.my/id/eprint/71489/1/FPSK%28M%29%202012%2041%20IR.pdf |
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| Summary: | Beta thalassemia is the most prevalent of all human genetic disease. In
Malaysia, 600,000 carriers of beta thalassemia were reported. Each year,
between 150 and 350 babies were born with beta thalassemia which mainly was
Malay and Chinese. There were also about 5,600 blood transfusion dependent
patients in Malaysia. The aim of the present study was to determine the health
related quality of life among patients with beta thalassemia and its associated
factors.
A cross-sectional study was conducted among patients with beta thalassemia
who attended the Paediatric Clinics, Hospital Tengku Ampuan Rahimah,
Hospital Serdang and Hospital Kajang in Selangor, Malaysia. Patients between the age of eight and 18 years old were invited to participate in the study. Data
was collected using a pretested structured questionnaire which included the
socio-demographic profile of the participants, medical information and a
validated Paediatric Quality of Life Inventory 4.0 (PedsQL version 4.0) which
verbal and written consents were obtained from the patients and their parents.
Data were analysed using Statistical Package Science System version 16.0 (SPSS
version 16.0). A significant level was determined at p value less than 0.05.
The respondents were 70 beta thalassemia patients who fulfilled the inclusion
criteria with a response rate of 97.2%. Majority 51 (72.9%) of the respondents
were between eight to 12 years old, 52.9% were male and majority 87.1% were
Malay. Most of the respondents had three or more siblings (65.7%) and did not
have other siblings with beta thalassemia (65.7%). Mostly they were beta
thalassemia major (58.6%) with less than 11 years duration of illness (58.6%) and
received blood transfusion also desferrioxamine treatment (71.4%).
The lowest scores from all six domains of health related quality of life was
school functioning (58.93 ± 17.93). This present study indicated that physical
functioning was associated with types of beta thalassemia (p = 0.005), types of
treatment (p = 0.001) and side effects of desferrioxamine treatment (p = 0.001).
The emotional functioning of this study was significantly associated with age,
education level and duration of illness with p = 0.003 respectively also the types of treatment (p = 0.002). The social functioning significantly associated with age
(p = 0.014), race (p = 0.011), especially Indian which compared with Malay the p
= 0.004 and compared the Indian with Chinese the p = 0.024, other than that
were education level (p = 0.014), types of beta thalassemia (p = 0.007), duration
of illness (p = 0.001) and types of treatment (p = 0.017) but the school
functioning was only significantly associated with frequency of blood
transfusion (p = 0.039).
The psycho social health summary score was associated with age and education
level (p = 0.037), duration of illness (p = 0.003) and types of treatment (p =
0.005). Therefore, for the total scale score was significantly associated with age
and education level which p value = 0.042 respectively, race (p = 0.030) which
the Indian significantly difference with Malay (p = 0.009) and Chinese (p =
0.019), types of beta thalassemia (p = 0.011), duration of illness and side effects
of desferrioxamine treatment with p = 0.006 respectively and also the types of
treatment (p < 0.001).
Patients with not on any treatments will decrease of 16.47 units (p = 0.018),
while those with no side effects of desferrioxamine treatment will increase of
14.60 units (p = 0.004) and every increases frequency of desferrioxamine
treatment will increase of 2.30 units (p = 0.004), which were predicted physical
functioning. The emotional functioning predictors were patients with not on any treatments will decrease of 18.87 units (p = 0.008) and every increases
duration of illness will increase of 1.56 units (p = 0.009). Social functioning was
predict the increases of age with increase of 1.66 units (p = 0.005), patients who
were non-Malay with decrease of 16.27 units (0.004) and non beta thalassaemia
major with decrease of 9.65 units (p = 0.014). Only patients with no side effects
of desferrioxamine treatment was predicted by increase of 11.28 units (p = 0.047)
of school functioning scores. Therefore, the predictors for psycho social health
summary score and total scale score were patients with not on any treatment
and increases frequency of blood transfusion with decrease of 29.87 units (p <
0.001) and decrease of 1.24 units (p = 0.023) of psycho social health summary
score also decrease of 21.16 units (p < 0.001) but every increases frequency of
blood transfusion will increase of 8.99 units (p = 0.018) of total scale score of
health related quality of life. |
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