METHODS: The semi-structured interviews were audio taped, transcribed verbatim, and translated into English.
RESULTS: Thematic analysis identified four themes: 1) reason for CAM disclosure, 2) attempt to disclose CAM, 3) withdrawal from CAM disclosure, and 4) non-disclosure of CAM use. The reason for patients' disclosure of CAM use to healthcare providers is because they wanted to find information about CAM and were afraid of the interaction between the conventional medicine and CAM. Patients also disclosed the use of CAM because they were not satisfied with the conventional medicine that had caused them harm.
CONCLUSION: Effective communication between patients and health care providers is important, especially for patients who are undergoing conventional thalassemia treatment, for fear that there is an interaction between conventional treatment and CAM use.
MATERIALS AND METHODS: HbE activates a cryptic splice site that produces non-functional mRNAs. Hb South Florida is a rare beta-hemoglobin variant, and its interactions with other beta-thalassemia alleles have not been reported. IVS1-1 is a Mediterranean mutation that affects mRNA processing giving rise to beta(o)-thalassemia.
RESULTS AND DISCUSSION: Fifteen mutations along the beta-globin gene complex were analyzed using the amplification refractory mutation system. Hb South Florida was identified by direct sequencing using genomic DNA.
CONCLUSION: The affected child with HbE/IVS1-1 produced a beta-thalassemia major phenotype. Compound heterozygosity for Hb South Florida/IVS1-1 produced a beta-thalassemia carrier phenotype in the mother.
METHODS: A cross-sectional survey using the EQ-5D-3L instrument was conducted between May to September 2018 across various public hospitals in Malaysia. Using a multi-stage sampling, patients diagnosed with TDT and receiving iron chelating therapy were sampled. The findings on the EQ-5D-3L survey were converted into utility values using local tariff values. A two-part model was used to examine and derive the HSUVs associated with the treatment and complications of iron overload in TDT.
RESULTS: A total of 585 patients were surveyed. The unadjusted mean (SD) EQ-5D-3L utility value for TDT patients were 0.893 (0.167) while mean (SD) EQ VAS score was 81.22 (16.92). Patients who had more than two iron overload complications had a significant decline in HRQoL. Patients who were on oral monotherapy had a higher utility value of 0.9180 compared to other regimen combinations.
CONCLUSION: Lower EQ-5D-3L utility values were associated with patients who developed iron overload complications and were on multiple iron chelating agents. Emphasizing compliance to iron chelating therapy to prevent the development of complications is crucial in the effort to preserve the HRQoL of TDT patients.
DESIGN AND METHODS: This is a cross-sectional survey. Data were collected on 162 parents of children diagnosed with thalassemia aged 12 years and younger in thalassemia day care centers of three public hospitals in Sabah, Malaysia. Data were collected using questionnaires, including General Health Questionaire-12 (GHQ-12), Duke University Religion Index (DUREL) and Brief RCOPE.
RESULTS: Forty-two percent of parents had psychological distress with GHQ score ≥ 3 (mean score of 2.85 ± 3.17). Ninety-five percent of parents used positive religious coping methods (mean P-COPE score 22.35 ± 2.33) more than negative religious coping methods (mean N-COPE score was 12.19 ± 5.23). They used Organized Religious Activities (mean ORA score of 4.20 ± 1.27), and Non-Organized Religious Activities (NORA, the mean was 4.17 ± 1.37). Positive and negative religious coping methods were significantly related to parents' psychological distress (P-COPE and GHQ-12 scores (rs (df) = 0.19, p