{"title":"影响重度β -地中海贫血成年患者健康相关生活质量的因素","authors":"S Ahmed, A Brifkani, H Ali, N Allawi","doi":"","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Health related quality of life (HRQoL) is a remarkable and powerful tool to decide the patient's perspective of their disease and its effect on their lives. Its application in thalassemia may have an impact on treatment option and may help predict mortality and morbidity.</p><p><strong>Method: </strong>This case control study included a total of 62 adult patients registered as β-thalassemia major at the Jin pediatric hematology-oncology center (Duhok city) in addition to 50 age and sex matched healthy controls. The RAND Short Form 36 (SF-36) Questionnaire was used to evaluate HR-QoL score, and data were analyzed using Statistical Package for Social Sciences software (SPSS).</p><p><strong>Result: </strong>The HRQoL mean scores were significantly lower in adults with thalassemia major when compared to their matched controls (66.35% Vs. 84.32% with P<0.0005). Among the eight domains of Short Form-36, all except role emotional were significantly reduced as compared to their respective scores in the controls. Among the patient's group, the most affected domain was the general health, while the least affected was the social function. Lower mean HRQoL scores were seen in those with female gender which was clinically significant only in the pain domain (p=0.004). Significantly lower scores were recorded for physical function, role limitation physical, energy/fatigue and general health domains in those with heart failure.</p><p><strong>Conclusion: </strong>The study documented that thalassemia major had lower HRQoL compared to their healthy counterparts. Further multicenter studies are needed to assess better the predictors of lower HRQoL in this population, since it would provide important insights for improving the management of the disease and the choices of the treatment.</p>","PeriodicalId":12610,"journal":{"name":"Georgian medical news","volume":" 359","pages":"136-142"},"PeriodicalIF":0.0000,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"FACTORS AFFECTING HEALTH RELATED QUALITY OF LIFE IN ADULT PATIENTS WITH BETA-THALASSEMIA MAJOR.\",\"authors\":\"S Ahmed, A Brifkani, H Ali, N Allawi\",\"doi\":\"\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Health related quality of life (HRQoL) is a remarkable and powerful tool to decide the patient's perspective of their disease and its effect on their lives. Its application in thalassemia may have an impact on treatment option and may help predict mortality and morbidity.</p><p><strong>Method: </strong>This case control study included a total of 62 adult patients registered as β-thalassemia major at the Jin pediatric hematology-oncology center (Duhok city) in addition to 50 age and sex matched healthy controls. The RAND Short Form 36 (SF-36) Questionnaire was used to evaluate HR-QoL score, and data were analyzed using Statistical Package for Social Sciences software (SPSS).</p><p><strong>Result: </strong>The HRQoL mean scores were significantly lower in adults with thalassemia major when compared to their matched controls (66.35% Vs. 84.32% with P<0.0005). Among the eight domains of Short Form-36, all except role emotional were significantly reduced as compared to their respective scores in the controls. Among the patient's group, the most affected domain was the general health, while the least affected was the social function. Lower mean HRQoL scores were seen in those with female gender which was clinically significant only in the pain domain (p=0.004). Significantly lower scores were recorded for physical function, role limitation physical, energy/fatigue and general health domains in those with heart failure.</p><p><strong>Conclusion: </strong>The study documented that thalassemia major had lower HRQoL compared to their healthy counterparts. Further multicenter studies are needed to assess better the predictors of lower HRQoL in this population, since it would provide important insights for improving the management of the disease and the choices of the treatment.</p>\",\"PeriodicalId\":12610,\"journal\":{\"name\":\"Georgian medical news\",\"volume\":\" 359\",\"pages\":\"136-142\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2025-02-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Georgian medical news\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"Medicine\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Georgian medical news","FirstCategoryId":"1085","ListUrlMain":"","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"Medicine","Score":null,"Total":0}
引用次数: 0
摘要
背景:健康相关生活质量(HRQoL)是一种重要而有力的工具,可以决定患者对疾病的看法及其对生活的影响。它在地中海贫血中的应用可能对治疗方案产生影响,并可能有助于预测死亡率和发病率。方法:本病例对照研究包括在Jin儿童血液肿瘤学中心(Duhok city)登记的62例β-地中海贫血成人患者,以及50例年龄和性别匹配的健康对照。采用RAND Short Form 36 (SF-36)问卷对HR-QoL评分进行评估,数据采用SPSS统计软件包进行分析。结果:重度地中海贫血患者的HRQoL平均得分明显低于对照组(66.35% Vs. p84.32%)。结论:研究表明,重度地中海贫血患者的HRQoL低于健康人。需要进一步的多中心研究来更好地评估这一人群中较低HRQoL的预测因素,因为它将为改善疾病管理和治疗选择提供重要的见解。
FACTORS AFFECTING HEALTH RELATED QUALITY OF LIFE IN ADULT PATIENTS WITH BETA-THALASSEMIA MAJOR.
Background: Health related quality of life (HRQoL) is a remarkable and powerful tool to decide the patient's perspective of their disease and its effect on their lives. Its application in thalassemia may have an impact on treatment option and may help predict mortality and morbidity.
Method: This case control study included a total of 62 adult patients registered as β-thalassemia major at the Jin pediatric hematology-oncology center (Duhok city) in addition to 50 age and sex matched healthy controls. The RAND Short Form 36 (SF-36) Questionnaire was used to evaluate HR-QoL score, and data were analyzed using Statistical Package for Social Sciences software (SPSS).
Result: The HRQoL mean scores were significantly lower in adults with thalassemia major when compared to their matched controls (66.35% Vs. 84.32% with P<0.0005). Among the eight domains of Short Form-36, all except role emotional were significantly reduced as compared to their respective scores in the controls. Among the patient's group, the most affected domain was the general health, while the least affected was the social function. Lower mean HRQoL scores were seen in those with female gender which was clinically significant only in the pain domain (p=0.004). Significantly lower scores were recorded for physical function, role limitation physical, energy/fatigue and general health domains in those with heart failure.
Conclusion: The study documented that thalassemia major had lower HRQoL compared to their healthy counterparts. Further multicenter studies are needed to assess better the predictors of lower HRQoL in this population, since it would provide important insights for improving the management of the disease and the choices of the treatment.