METHODS: Sample characteristics and patient-reported outcome (PRO) measures addressing self-efficacy (PROMIS SEMEM & SEMSI) and symptom burden (MDASI BT or SP) were collected in a novel web-based study of 158 adult patients diagnosed with rare CNS tumors.
RESULTS: The sample was predominantly female (73%), diagnosed with an ependymoma (66%), and had a median age of 45 (19-75). Low SEMEM was associated with a longer duration of symptoms before surgery (r = -0.26) and female gender (92%) among brain tumor (BT) participants and in spinal cord tumors (SCT), those with lower education (r = 0.29). Reporting low SEMSI was associated with being married (42%), lower education (r = 0.22), and a prolonged time with symptoms before surgery (r = 0.29) in those with BTs, with no associations identified in SCT. More severe mood-related interference (including mood, enjoyment of life, and relationship with others) was associated with lower SEMEM among both locations (r = -0.61 brain, r = -0.28 spine) and SEMSI in BT participants (r = -0.54).
CONCLUSIONS: Low self-efficacy was linked to a prolonged time between symptom onset and initial surgery, education, gender, and marital status and was associated with higher mood-related interference. Understanding characteristics associated with low self-efficacy underscores a need for future studies to tailor interventions that enhance self-efficacy.
方法:在一项新的基于网络的研究中,收集了样本特征和患者报告的结果(PRO)措施,以解决自我效能(PROMISSEMEM和SEMSI)和症状负担(MDASIBT或SP)158名被诊断患有罕见中枢神经系统肿瘤的成年患者。
结果:样本主要是女性(73%),诊断为室管膜瘤(66%),年龄中位数为45岁(19-75岁)。在脑肿瘤(BT)参与者和脊髓肿瘤(SCT)中,低SEMEM与手术前症状持续时间更长(r=-0.26)和女性(92%)相关。受教育程度较低的人(r=0.29)。报告较低的SEMSI与已婚有关(42%),较低的教育水平(r=0.22),手术前症状时间延长(r=0.29),在SCT中没有识别出关联。更严重的情绪相关干扰(包括情绪,享受生活,以及与他人的关系)与两个位置之间较低的SEMEM相关(r=-0.61大脑,r=-0.28脊柱)和BT参与者的SEMSI(r=-0.54)。
结论:低自我效能感与症状发作和初次手术之间的时间延长有关,教育,性别,和婚姻状况,并与较高的情绪相关干扰有关。了解与低自我效能感相关的特征强调了未来研究的必要性,以调整增强自我效能感的干预措施。