An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model.
An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model.
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DOI：
10.1007/s11136-022-03132-z
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发表时间：
2022-09
影响因子：
3.5
通讯作者：
Wun, Theodore
中科院分区：
文献类型：
--
作者：
Treadwell, Marsha J.;Mushiana, Swapandeep;Badawy, Sherif M.;Preiss, Liliana;King, Allison A.;Kroner, Barbara;Chen, Yumei;Glassberg, Jeffrey;Gordeuk, Victor;Shah, Nirmish;Snyder, Angela;Wun, Theodore
关键词：
在多中心镰状细胞病实施联盟（SCDIC）登记研究中入组的18 - 45岁镰状细胞病（SCD）成人患者的概念模型内，检查患者报告结局（PRO）之间的关系。我们假设患者和SCD相关因素，特别是疼痛和护理障碍，将独立地有助于使用PRO域测量功能。参与者（N = 2054）完成了48项调查，包括社会人口统计学和PRO指标，例如，社会功能、疼痛影响、情绪困扰和认知功能。参与者报告了终生SCD并发症、疼痛发作频率和严重程度以及医疗保健障碍。在控制年龄、性别和部位的情况下，疼痛频率越高，所有PRO领域的结局越差（OR范围1.02-1.10，95% CI范围[1.004-1.12]）。报告的抑郁症治疗史与7项PRO指标中的5项相关（OR范围1.58-3.28，95% CI范围[1.18-4.32]）。较少的个人护理障碍和较少的SCD并发症与情感领域的更好结局相关（OR范围0.46-0.64，95% CI范围[0.34-0.86]）。研究结果强调了生物心理社会模型的重要性，以提高对这一复杂人群的需求的理解，并设计多维度的方法，提供更有效的干预措施，以改善结果。在线版本包含补充材料，可通过10.1007/s11136-022-03132-z获得。
To examine the relations between patient-reported outcomes (PROs) within a conceptual model for adults with sickle cell disease (SCD) ages 18 – 45 years enrolled in the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) registry. We hypothesized that patient and SCD-related factors, particularly pain, and barriers to care would independently contribute to functioning as measured using PRO domains. Participants (N = 2054) completed a 48-item survey including socio-demographics and PRO measures, e.g., social functioning, pain impact, emotional distress, and cognitive functioning. Participants reported on lifetime SCD complications, pain episode frequency and severity, and barriers to healthcare. Higher pain frequency was associated with higher odds of worse outcomes in all PRO domains, controlling for age, gender and site (OR range 1.02–1.10, 95% CI range [1.004–1.12]). Reported history of treatment for depression was associated with 5 of 7 PRO measures (OR range 1.58–3.28 95% CI range [1.18–4.32]). Fewer individual barriers to care and fewer SCD complications were associated with better outcomes in the emotion domain (OR range 0.46–0.64, 95% CI range [0.34–0.86]). Study results highlight the importance of the biopsychosocial model to enhance understanding of the needs of this complex population, and to design multi-dimensional approaches for providing more effective interventions to improve outcomes. The online version contains supplementary material available at 10.1007/s11136-022-03132-z.
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影响因子：
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通讯作者：
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