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.

中文翻译：

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病人报告的镰状细胞病结局以及与临床和社会心理因素的关联：镰状细胞病实施协会的报告。

了解镰状细胞病（SCD）患者的经验，生活质量和治疗需求对于促进健康和福祉至关重要。我们使用了成人镰状细胞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）和神经系统疾病的生活质量（NeuroQol）中的方法来评估疼痛影响，睡眠影响，社会功能，抑郁症状，疲劳和认知功能（统称患者报告的结局[PRO]），并确定相关的人口统计学和临床​​特征。通过八个镰状细胞病实施协会（SCDIC）站点招募了18至45岁之间的参与者（n = 2201）。在多变量模型中，PRO之间存在显着相关性。F =  88.74，P  <.0001）。睡眠影响与家庭收入，使用阿片类药物，影响疼痛，社交功能，抑郁症状和疲倦有关（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/炎性合并症，疼痛影响，睡眠影响，抑郁症状，疲倦和认知功能有关（F =  121.73，P  <.0001）。抑郁症状与性别，睡眠影响，社会功能，疲倦和认知功能有关（F =  239.51，P <.0001）。疲倦与性别，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注册管理机构参与者中的基本PRO评估。需要进一步研究以更好地了解这些结果以及干预措施的新目标，以改善SCD患者的生活质量和功能。