Department of Medicine, School of Nursing, Duke University, Durham, North Carolina.
RTI International, North Carolina.
Am J Hematol. 2020 Sep;95(9):1066-1074. doi: 10.1002/ajh.25880. Epub 2020 Jun 29.
Understanding patient experiences, quality of life, and treatment needs in individuals with sickle cell disease (SCD) is essential in promoting health and well-being. We used measures from the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), Patient Reported Outcomes Measurement Information System (PROMIS), and Quality of Life in Neurological Disorders (NeuroQol) to evaluate pain impact, sleep impact, social functioning, depressive symptoms, tiredness, and cognitive function (collectively, patient reported outcomes [PROs]) and to identify associated demographic and clinical characteristics. Participants (n = 2201) between 18 and 45 years were recruited through the eight Sickle Cell Disease Implementation Consortium (SCDIC) sites. In multivariate models, PROs were significantly associated with one another. Pain impact was associated with age, education, employment, time since last pain attack, hydroxyurea use, opioid use, sleep impact, social functioning, and cognitive function (F = 88.74, P < .0001). Sleep impact was associated with household income, opioid use, pain impact, social functioning, depressive symptoms, and tiredness (F = 101.40, P < .0001). Social functioning was associated with employment, pain attacks in the past year, autoimmune/inflammatory comorbidities, pain impact, sleep impact, depressive symptoms, tiredness, and cognitive function (F = 121.73, P < .0001). Depressive symptoms were associated with sex, sleep impact, social functioning, tiredness, and cognitive function (F = 239.51, P < .0001). Tiredness was associated with sex, education, sleep impact, social functioning, depressive symptoms, and cognitive function (F = 129.13, P < .0001). These findings reflect the baseline PRO assessments among SCDIC registry participants. Further research is needed to better understand these outcomes and new targets for interventions to improve quality of life and function in people with SCD.
了解镰状细胞病 (SCD) 患者的体验、生活质量和治疗需求对于促进健康和福祉至关重要。我们使用了来自成人镰状细胞病生活质量测量信息系统 (ASCQ-Me)、患者报告的结果测量信息系统 (PROMIS) 和神经疾病生活质量 (NeuroQol) 的测量工具来评估疼痛影响、睡眠影响、社会功能、抑郁症状、疲劳和认知功能（统称为患者报告的结果 [PROs]），并确定相关的人口统计学和临床特征。参与者（n=2201）年龄在 18 至 45 岁之间，通过八个镰状细胞病实施联盟 (SCDIC) 招募。在多变量模型中，PROs 彼此显著相关。疼痛影响与年龄、教育程度、就业状况、上次疼痛发作后的时间、羟基脲的使用、阿片类药物的使用、睡眠影响、社会功能和认知功能有关（F=88.74，P<.0001）。睡眠影响与家庭收入、阿片类药物的使用、疼痛影响、社会功能、抑郁症状和疲劳有关（F=101.40，P<.0001）。社会功能与就业、过去一年的疼痛发作、自身免疫/炎症合并症、疼痛影响、睡眠影响、抑郁症状、疲劳和认知功能有关（F=121.73，P<.0001）。抑郁症状与性别、睡眠影响、社会功能、疲劳和认知功能有关（F=239.51，P<.0001）。疲劳与性别、教育程度、睡眠影响、社会功能、抑郁症状和认知功能有关（F=129.13，P<.0001）。这些发现反映了 SCDIC 登记参与者的基线 PRO 评估。需要进一步的研究来更好地了解这些结果以及为改善 SCD 患者生活质量和功能的新干预目标。
