Factors Affecting Health Related Quality of Life among Thalassemia Patients Attending Yemen Society for Thalassemia in Sana’a

Abstract

Background of the study Thalassemia is a major health problem that disturbs the lifestyle of the affected patient. The knowledge of the factors associated with health-related quality of life among patients with Thalassemia is essential in developing clinical and social support programs to improve treatment outcomes of these patients.

Objective of the study The objective of the study was to examine the factors affecting health related quality of life among Thalassemia patients attending Yemen Society for Thalassemia Sana'a-Yemen .

Methods A descriptive, cross-sectional study was conducted among Thalassemia patients attending Yemen Society for Thalassemia, from July to September 2020. A sample size of 344 Thalassemia patients between 5 and 18 years of age was included in this study selected by using simple random sampling method. Data was collected by using the Pediatric Quality of Life (PedsQL) 4.0 Generic Core Scale as face to face interview with children and their parents. The scale consisted of four domains (Physical functioning, emotional functioning, social functioning, and school functioning) and other related demographic and clinical characteristics of the patients. The piloted of the PedsQLTM 4.0 was performed before data collection on 10% of the patients to identifyvalidity and reliability of the PedsQLTM 4.0. Data coded, entered and analyzed through SPSS version 21.0.A 5-point response scale was utilized across child self-report and parent proxy-report (0 = never a problem; 1 = almost never a problem; 2 = sometimes a problem; 3 = often a problem; 4 = almost always a problem).On the PedsQLTM 4.0 Scales, for ease of interpretability, items were reversed, scored and linearly transformed the 0-4 scale items to a 0-100 scale as follows: 0=100, 1=75, 2=50, 3=25, 4=0. Correlation was done to measure the relationship between factors and the HRQoL outcome through Point-biserial correlation, Pearson‘s correlation, Spearman‘s Correlation and Eta correlation as appropriate. Two-tailed, p-value <0.05 was considered statistically significant.

Results The study results showed that the Thalassemia patients were males with a percentage of (54.9 ( % The age of the Thalassemia patients ranged (13-18) was with a percentage of (34.9%). Most of the Thalassemia patients (60.5%) lived in urban, (60.8%) of them had basic education and (22.4%) were from Sana'a City. (59.6%) had Beta- Thalassemia, (55.5%) were diagnosed first 2 years of life, (38.7%) of the patients had family history of Thalassemia and (57.3%) had siblings with Thalassemia.Participants with a percentage (70.6%) were from families with consanguineous marriage. The majority of the patients (61.3%) had iron overload complications and out of 344 of the patients, 97 (28.2%) had heart disease as a type of iron overload complications. The Hb level pre-transfusion was less than 7mg/dl for 236 patients (68.6%), (67.4%) of the participated patients measured ferritin level. Among those who measured the ferritin level, (86.3%) had over 2000ng/ml in ferritin level. The age mean ±SD of those started iron chelation therapy was (6.6±3).Majority of participants (95.6%) received blood transfusion. Among those who transfused blood, (53.8%) regularly transfused blood. (67.4%) of them did not get chelation therapy. However, among those who received the chelation, (39.3%) regularly received the chelation. Two hundred thirty two of the participated patients with a percentage of (67.4%) measured ferritin level and (75.7%) of them said that the blood supply was adequate at the Society for Thalassemia. The total HRQoL mean score was found to be (50.6±16.5) with the highest mean scores in the social (69.3±20.2) and emotional (55.9±20.7) functioning domains followed by school functioning (52.2±19.3) and lastly lowest mean scores in physical functioning domain (45.1±18.2).There was a smallcorrelation between age, level of education, residency and total HRQoL summary scores, which was statistically significant (P-value<0.05). There was a smallcorrelation between types of Thalassemia, iron over load complications, pre-transfusion Hb level, age at received iron chelation and total HRQoL summary scores (P-value<0.05).There was a smallcorrelation between regimen of blood transfusion, regimen of received iron chelation, frequency of ferritin measured, school absenteeism due to treatment, access to the treatment society and total HRQoL summary scores, which was statistically significant(P-value<0.05).

Conclusions and Recommendations Thalassemia disease limits the physical and school functioning of the patients. This change can be explained by several factors. First of all, the unavailability of the iron chelating medicine, so most of the patients could not get their iron chelating therapy.The total HRQoL mean score was found to be (50.6±16.5) with the highest mean scores in the social and emotional functioning domains followed by school functioning and lastly lowest mean scores in physical functioning domain. According to the study results, the researcher introduced several recommendations. HRQoL of Thalassemia patients should be improved through providing intervention programs that focus on the affected domains. In addition, these programs should include support of the patients and their families especially the psychological support to avoid mental disorders. Health care services should be improved for children with Thalassemia to become more patient-centered, flexible and comprehensive which may reduce time spent at the Society for Thalassemia and also to improve the treatment outcomes.