镰状细胞病患者的生活质量：什么才重要。
Quality of Life in Sickle Cell Disease: What Matters.
机构信息
Department of Pediatrics, Division of Hematology, University of California San Francisco, UCSF Benioff Children's Hospital Oakland, 747 52nd Street, Oakland, CA 94609, USA.
Psychological Service Lead, Haematology and Sickle Cell Centre, London North West University Healthcare NHS Trust and Faculty of Medicine, Central Middlesex Hospital, Imperial College London, London, United Kingdom.
出版信息
Hematol Oncol Clin North Am. 2022 Dec;36(6):1137-1149. doi: 10.1016/j.hoc.2022.06.010.
Health-related quality of life (HRQoL) represents the practical effects of an illness in terms of symptoms and impacts, and of consequent treatments, as perceived by the patient. HRQoL is a complex multidimensional phenomenon in sickle cell disease (SCD) involving external stressors, thought patterns, emotional distress, physiological arousal, pain, and other complications of SCD. Social determinants of health comprise food and housing security, employment and education, and experiences of racism and discrimination; these social determinants also potentially affect health, HRQoL, and access to health care. Interventions must be implemented in partnership between individuals with SCD and their health-care providers.
健康相关生活质量（HRQoL）代表了患者感知到的疾病症状和影响，以及相应治疗的实际效果。在镰状细胞病（SCD）中，HRQoL 是一种复杂的多维现象，涉及外部压力源、思维模式、情绪困扰、生理唤醒、疼痛和 SCD 的其他并发症。健康的社会决定因素包括食物和住房安全、就业和教育，以及经历种族主义和歧视；这些社会决定因素也可能影响健康、HRQoL 和获得医疗保健的机会。干预措施必须在 SCD 患者及其医疗保健提供者之间建立伙伴关系来实施。
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