Quality of life of adult patients with sickle cell disease.

Valerie Mann-Jiles, Diana Lynn Morris
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引用次数: 49

Abstract

Purpose: The purpose of this descriptive study was to examine quality of life (QOL) in adult patients with sickle cell anemia, hemoglobin SC, or hemoglobin S beta thalassemia.

Data sources: Data were collected from a convenience sample of 62 adult patients (18 years of age and older) with sickle cell disease (SCD) in an outpatient clinic devoted to the care of hematological and oncological disorders. Burckhardt and Anderson's 16-item self-report Quality of Life Scale (QOLS) and a demographic questionnaire were used for data collection.

Conclusions: The average QOLS scores for healthy populations are 90. The overall mean QOL score in this study of 83.6 (SD = 13.2) was lower than those of the general population. In this study, scores ranged from 52 to 112. Approximately 35% (n = 22) of participants' scores ranged from 52 to 75; approximately 35% (n = 22) of participants' scores ranged from 75 to 85; and approximately 30% (n = 17) of participants' scores ranged from 85 to 112. Other results were nonsignificant for all variables except the variable that assessed the extent to which participants consider themselves to be spiritual. Future research is needed to further the understanding of the impact of QOL in adults with SCD.

Implications for practice: A better understanding of adult patients with SCD QOL may ultimately improve healthcare services for this population. The findings could lead to future research that can identify factors that most impact the QOL of people living with SCD.

成年镰状细胞病患者的生活质量。
目的:本描述性研究的目的是检查镰状细胞性贫血、血红蛋白SC或血红蛋白S β地中海贫血成年患者的生活质量(QOL)。数据来源:数据收集自62例镰状细胞病(SCD)成人患者(18岁及以上)的方便样本,这些患者在一家专门治疗血液和肿瘤疾病的门诊就诊。使用Burckhardt和Anderson的16项自我报告生活质量量表(QOLS)和人口调查问卷进行数据收集。结论:健康人群的平均生活质量评分为90分。本研究总体平均生活质量评分为83.6 (SD = 13.2),低于一般人群。在这项研究中,得分从52到112不等。大约35% (n = 22)的参与者得分在52到75之间;大约35% (n = 22)的参与者得分在75到85之间;大约30% (n = 17)的参与者得分在85到112之间。除了评估参与者认为自己属灵程度的变量外,其他所有变量的结果都不显著。未来的研究需要进一步了解成人SCD患者生活质量的影响。实践意义:更好地了解成年SCD患者的生活质量可能最终改善该人群的医疗保健服务。这些发现可能会导致未来的研究,以确定最影响SCD患者生活质量的因素。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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