Poor health related quality of life among patients of sickle cell disease

镰状细胞病患者的健康相关生活质量较差

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Abstract

BACKGROUND: Sickle cell disease (SCD) is characterized by chronic hemolytic anemia and vascular occlusion, causing recurrent painful episodes, neuro-cognitive deficits, organ failures and death in early adulthood. Besides the medical consequences, most of the families with a child of SCD have to cope with financial and social crisis. Quality of life (QOL) is a broad multidimensional concept that usually includes subjective evaluations of both positive and negative aspects of life. Other than health; emotional well being, social dysfunction, chronic pain and fatigability are also important aspects of overall quality of life that add to the complexity of its measurement. AIM: The present case control study was designed to determine the health related quality of life (HRQoL) in patients of sickle cell disease and to compare it with patients of other chronic non-communicable diseases. SETTING AND DESIGN: Case control study conducted at tertiary health care facility of Central India. MATERIAL AND METHODS: The present study conducted to measure HRQoL among patients of SCD and patients of other chronic non-communicable diseases. A translated and pretested version of WHO SF-36 questionnaire was used to measure HRQoL. RESULTS: We observed that there was significantly lower HRQoL among SCD patients. CONCLUSION: Besides merely pharmacotherapy, restoration of overall quality of life should be the mainstay of management of patients with SCD.

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