Background: Little is known about the impact of MF on quality of life (QoL) in newly diagnosed patients. Objectives: To describe the impact of the MF diagnosis on QoL, patient expectations, and treatment satisfaction over the first 6 months after diagnosis. Methods: Outcomes of this prospective cohort study of newly diagnosed MF patients conducted between 2020 and 2022 at the Leiden University Medical Center included the Skindex-29, RAND-12 Health Survey, degree of itch, pain, and fatigue (Visual Analogue Scale (VAS)), patient expectations, and Client Satisfaction Questionnaire-8 (CSQ-8), measured at baseline and after six months. Results: A total of 28 patients with MF were included. At baseline, 66% (n = 18) “strongly-totally” expected positive effects of the treatment. At the time of diagnosis, 28% of the patients (n = 8) were moderately to severely affected. There was no statistical change in the Skindex-29 score sum score (20 [10–34] vs. 20 [9–36];p= 0.81) or in the other three subdomains, the RAND-12 scores, and the VAS itch, pain, and fatigue over time. Treatment satisfaction was high overall. Conclusion: Despite that the newly diagnosed MF patients anticipate a positive treatment effect, few improvements in QoL and symptom reduction were found. These data can be used for adequate expectation management and provide a rationale for further evaluation of treatment regimens in these patients.
背景：目前关于蕈样肉芽肿（MF）对新确诊患者生活质量（QoL）影响的研究尚不充分。目的：描述MF诊断对患者确诊后6个月内生活质量、治疗期望及治疗满意度的影响。方法：本前瞻性队列研究于2020至2022年在莱顿大学医学中心开展，纳入新确诊MF患者，分别在基线及6个月后通过Skindex-29量表、RAND-12健康调查、瘙痒/疼痛/疲劳视觉模拟评分（VAS）、患者期望问卷及CSQ-8满意度量表进行评估。结果：共纳入28例MF患者。基线时66%（n=18）患者对治疗"强烈至完全"持积极预期。确诊时28%（n=8）患者受疾病中度至重度影响。随访期间Skindex-29总分（20[10-34] vs. 20[9-36]; p=0.81）及其三个子领域、RAND-12评分、VAS瘙痒/疼痛/疲劳评分均未出现统计学变化。总体治疗满意度较高。结论：尽管新确诊MF患者对治疗抱有积极预期，但其生活质量与症状改善有限。本研究数据可为临床预期管理提供依据，并为优化该群体治疗方案提供参考。
肿瘤(癌症)患者之家