Abstract
INTRODUCTION: Thalassaemia is a common public health problem in Malaysia and about 4.5 to 6% of the Malays and Chinese are carriers of this genetic disorder. Thalassaemia is classified into transfusion dependent thalassemia (TDT) or non-transfusion dependent (NTDT). As of November 2018, 8681 patients with thalassaemia have been registered in the Malaysia Thalassaemia Registry (MTR) and 7984 (91.8%) were reported to be alive. Comprehensive care has resulted in long-term survival, therefore patients need to be knowledgeable to cope with the disease. Therefore, this study aims to assess patients' knowledge on both thalassaemia disease and treatment.
METHODS: A cross-sectional study was conducted on transfusion dependent thalassaemia patients aged 18 years and older from seven public hospitals in Malaysia. Patients who are able to understand Malay or English and consented to the study were invited to answer a self-administered questionnaire from Thalassaemia Module First Edition 2017 produced by Family Health Development Division with Health Education Division, Ministry of Health for assessing their knowledge. The questionnaire comprised 40 questions. Participants ' knowledge about thalassaemia was assessed in two parts namely about the disease and treatment. Each part consists of five domains with a total of 20 questions. Patients were required to answer true or false for each statement. Each question, a correct response was given a score of one, and an incorrect was scored as zero, given a total possible score of 0-40, with higher scores indicating better knowledge. Data was analysed using SPSS 20.0 for Windows. Descriptive statistics and one way analysis of variance (ANOVA) were used for comparisons of means. Values of p < 0.05 were considered significant.
RESULTS: A total of 273 patients with a mean age of 29.9 (SD ± 9.66) years with 1.2 females per male was included in this study. Malay is the highest ethnic group, followed by Chinese and Kadazan-Dusun at 68, 24 and five percent respectively. Half of the respondent attained tertiary education and received a single agent for iron chelating therapy (ICT). Findings showed 59% of the patient scored high knowledge (score >15) on thalassaemia disease, however only 13% scored high knowledge about treatment. The mean total knowledge score of 25.8 out of possible score of 40 may reflect a general lack of knowledge among the study participants. How thalassaemia inherited and prevented as well as side effects of ICT had the lowest right answers. Education level and ICT showed statistically significant differences in total knowledge score. Patients with no formal education and receiving Deferasirox (DFX) as oral single dose agent, had the lowest mean (23.9 ±4.94) (23.7 ±6.37) respectively. DISCUSSION: Knowledge deficits regarding the inheritance of thalassaemia, make integral part of any public educational intervention should be information on the heredity of thalassaemia. Knowledge on possible treatment for thalassaemia might be the key for better compliance among patients. Interventions to increase knowledge of thalassaemia should be concentrated more in the low- educated groups because understanding thalassaemia might be more difficult for them.
Links
- https://apcph.cphm.my/wp-content/uploads/2022/07/APCPH2022-P-15.pdf
- https://apcph.cphm.my/wp-content/uploads/wpforms/1176-1e04940bb5d885bf8711ed1909[...]
BibTeX (Download)
@proceedings{APCPH2022-P-15,
title = {Assessing Knowledge on Thalassaemia Among Transfusion Dependent Thalassaemia Patients},
author = {Nur Azmiah Zainuddin and Tan Meng Wah and Nor Hasni Haron and Siti Sarah Syahirah Kushairi and Nurul Farhana Burhanudin and Nur Farahanim Mohd Tahir and Leong Hoon Hing and Lim V Co and Zulkarnain Abdul Karim},
url = {https://apcph.cphm.my/wp-content/uploads/2022/07/APCPH2022-P-15.pdf
https://apcph.cphm.my/wp-content/uploads/wpforms/1176-1e04940bb5d885bf8711ed19095a89ed/Poster-for-APCPH-final-09ea5f6abbe325dade0a1935fcbe7caa.pdf},
year = {2022},
date = {2022-08-02},
urldate = {2022-08-02},
issue = {7},
abstract = {INTRODUCTION: Thalassaemia is a common public health problem in Malaysia and about 4.5 to 6% of the Malays and Chinese are carriers of this genetic disorder. Thalassaemia is classified into transfusion dependent thalassemia (TDT) or non-transfusion dependent (NTDT). As of November 2018, 8681 patients with thalassaemia have been registered in the Malaysia Thalassaemia Registry (MTR) and 7984 (91.8%) were reported to be alive. Comprehensive care has resulted in long-term survival, therefore patients need to be knowledgeable to cope with the disease. Therefore, this study aims to assess patients' knowledge on both thalassaemia disease and treatment.
METHODS: A cross-sectional study was conducted on transfusion dependent thalassaemia patients aged 18 years and older from seven public hospitals in Malaysia. Patients who are able to understand Malay or English and consented to the study were invited to answer a self-administered questionnaire from Thalassaemia Module First Edition 2017 produced by Family Health Development Division with Health Education Division, Ministry of Health for assessing their knowledge. The questionnaire comprised 40 questions. Participants ' knowledge about thalassaemia was assessed in two parts namely about the disease and treatment. Each part consists of five domains with a total of 20 questions. Patients were required to answer true or false for each statement. Each question, a correct response was given a score of one, and an incorrect was scored as zero, given a total possible score of 0-40, with higher scores indicating better knowledge. Data was analysed using SPSS 20.0 for Windows. Descriptive statistics and one way analysis of variance (ANOVA) were used for comparisons of means. Values of p \< 0.05 were considered significant.
RESULTS: A total of 273 patients with a mean age of 29.9 (SD ± 9.66) years with 1.2 females per male was included in this study. Malay is the highest ethnic group, followed by Chinese and Kadazan-Dusun at 68, 24 and five percent respectively. Half of the respondent attained tertiary education and received a single agent for iron chelating therapy (ICT). Findings showed 59% of the patient scored high knowledge (score \>15) on thalassaemia disease, however only 13% scored high knowledge about treatment. The mean total knowledge score of 25.8 out of possible score of 40 may reflect a general lack of knowledge among the study participants. How thalassaemia inherited and prevented as well as side effects of ICT had the lowest right answers. Education level and ICT showed statistically significant differences in total knowledge score. Patients with no formal education and receiving Deferasirox (DFX) as oral single dose agent, had the lowest mean (23.9 ±4.94) (23.7 ±6.37) respectively. DISCUSSION: Knowledge deficits regarding the inheritance of thalassaemia, make integral part of any public educational intervention should be information on the heredity of thalassaemia. Knowledge on possible treatment for thalassaemia might be the key for better compliance among patients. Interventions to increase knowledge of thalassaemia should be concentrated more in the low- educated groups because understanding thalassaemia might be more difficult for them.},
howpublished = {published online at https://apcph.cphm.my},
note = {Type: POSTER PRESENTATION; Organisation: Institute for Health Systems Research; Hospital Kuala Lumpur; Hospital Selayang; Hospital Raja Perempuan Zainab II; Hospital Bukit Mertajam; Hospital Melaka; Hospital Queen Elizabeth; Hospital Ampang; National Institutes of Health},
keywords = {},
pubstate = {published},
tppubtype = {proceedings}
}