Jirayu Mahityutthana. Health-related quality of life and satisfaction with health service of Thalassemia patients . Master's Degree(Pharmacy Administration). Mahidol University. : Mahidol University, 2007.
Health-related quality of life and satisfaction with health service of Thalassemia patients
Abstract:
In Thailand, thalassemia is an important inherited disease. Thalassemia
particularly affects the red blood cells. However, the impact of thalassemia on
patient’s quality of life (QOL) is rarely known. This study was conducted to assess
the health-related quality of life (HRQOL) of thalassemia patients in order to explore
factors affecting on their QOL, as well as examine the patients’ satisfaction with
health care services. The PedsQL 4.0 generic core scales (Thai version) were
administered to children with thalassemia at three treatment centers (Saraburi
Hospital, King Chulalongkorn Memorial Hospital and Phramongkutklao Hospital).
Demographic and clinical characteristics were obtained from medical chart reviews.
Three hundred and sixty two thalassemia patients, ages 2 to 18, were enrolled in the
study.
Results revealed that the mean ± SD total HRQOL score was 76.67 ± 11.40 for
children who were self-reporting and it was 74.69 ± 14.42 for parent proxy reports.
These patients indicated having some impairment in the physical domain, as shown in
the score of 78.24 ± 14.77. In the psychosocial domain, the school functioning score
was the lowest (67.89 ± 15.92), followed by the emotional functioning score (75.90 ±
16.62) and the social functioning score (83.71 ± 14.73), respectively. These findings
indicated that age, the onset age of anemia, the severity of the disease (severe or nonsevere),
treatment status (regular or non-regular treatment) and pre-transfusion Hb
level were significantly associated with the QOL of thalassemia children. Satisfaction
questionnaires revealed that the patients in every treatment center reported a high
satisfaction level with health services. In addition, no significant differences in
satisfaction levels were found across payment schemes.
These findings suggest that regular treatments should be provided for these
patients since it could improve the patient’s QOL. By receiving regular treatments,
patients would be receiving blood transfusions if their Hb level are < 7 g/dL. They
would receive iron chelation therapy when the serum ferritin level rises above 1000
ng/ml, and if they are diagnosed with homozygous-beta thalassemia or if the onset of
anemia occurred before 2 years of age and their blood transfusion occurred before 4
years of age they would receive a high transfusion. In addition, special attention
should be given to severe cases since they reported the lowest QOL.