Gómez-Ballesteros Rocío, Sainz de la Maza Susana, Borges Mónica, Martín-Martínez Jesús, Sotoca Javier, Alonso Ana, Caminero Ana B, Borrega Laura, Sánchez-Menoyo José L, Barrero-Hernández Francisco J, Calles Carmen, Brieva Luis, Blasco-Quílez María R, Dotor García-Soto Julio, Rodríguez-Regal Ana, Navarro-Cantó Laura, Agüera Eduardo, Garcés-Redondo Moisés, Carmona Olga, Gabaldón-Torres Laura, Forero Lucía, Hervás Mariona, Castillo-Triviño Tamara, Maurino Jorge
Medical Department, Roche Farma, Madrid, Spain.
Department of Neurology, Hospital Universitario Ramón y Cajal, Madrid, Spain.
Front Psychiatry. 2025 Jul 8;16:1565150. doi: 10.3389/fpsyt.2025.1565150. eCollection 2025.
Multiple sclerosis is one of the most common causes of neurological disability in young adults, with major consequences for their future lives. Patients with early-stage relapsing-remitting multiple sclerosis (RRMS) experience uncertainty and intense emotions as the diagnosis is disclosed. Illness perception at this point can influence levels of adjustment, coping strategies, treatment adherence, and well-being of the patient. However, there is limited information on patient illness perception surrounding the diagnosis.
The aim of this study was to assess illness perception and associated factors in early-stage RRMS patients.
A multicenter, non-interventional study was conducted. Adult patients with a diagnosis of RRMS, a disease duration of ≤ 3 years, and an Expanded Disability Status Scale (EDSS) score of 0-5.5 were included. The Brief-Illness Perception Questionnaire (B-IPQ) was used to assess the patients' cognitive and emotional representations of their illness. Different patient-reported measures were used to gather information on pain, fatigue, mood/anxiety, quality of life, symptom severity, feelings of hopelessness, perception of stigma, cognition, hand dexterity, gait, and workplace difficulties. A multivariate logistic regression analysis was performed to assess the association between the patients' illness perception and demographic and clinical characteristics, as well as patient-reported outcomes.
A total of 189 patients were included (mean age: 36.1 ± 9.4 years, 71.4% females, mean disease duration: 1.4 ± 0.8 years). The median EDSS score was 1.0 (interquartile range: 0.0-2.0). A total of 36.5% of the patients (n=69/189) had a moderate-to-high threatening illness perception, and 45.5% thought that their disease was caused by psychological factors. Higher EDSS scores, symptom severity, poorer psychological quality of life, perception of stigma, and greater hopelessness were predictors of moderate-to-high threatening illness perception.
Threatening illness perceptions are common among patients with early-stage RRMS. Identifying these beliefs and their associated factors, and establishing individualized interventions, may help patients deal with their condition.
多发性硬化症是年轻成年人神经功能残疾最常见的病因之一，对他们的未来生活有重大影响。早期复发缓解型多发性硬化症（RRMS）患者在得知诊断结果时会经历不确定性和强烈情绪。此时的疾病认知会影响患者的适应水平、应对策略、治疗依从性和幸福感。然而，关于患者在诊断前后的疾病认知信息有限。
本研究旨在评估早期RRMS患者的疾病认知及相关因素。
开展一项多中心、非干预性研究。纳入诊断为RRMS、病程≤3年且扩展残疾状态量表（EDSS）评分为0 - 5.5的成年患者。采用简明疾病认知问卷（B - IPQ）评估患者对疾病的认知和情感表征。使用不同的患者报告测量方法收集有关疼痛、疲劳、情绪/焦虑、生活质量、症状严重程度、绝望感、耻辱感、认知、手部灵活性、步态和工作场所困难等方面的信息。进行多因素逻辑回归分析，以评估患者的疾病认知与人口统计学和临床特征以及患者报告结局之间的关联。
共纳入189例患者（平均年龄：36.1±9.4岁，71.4%为女性，平均病程：1.4±0.8年）。EDSS评分中位数为1.0（四分位间距：0.0 - 2.0）。共有36.5%的患者（n = 69/189）具有中度至高度的威胁性疾病认知，45.5%的患者认为其疾病是由心理因素引起的。较高的EDSS评分、症状严重程度、较差的心理生活质量、耻辱感和更强的绝望感是中度至高度威胁性疾病认知的预测因素。
在早期RRMS患者中，威胁性疾病认知很常见。识别这些信念及其相关因素，并制定个性化干预措施，可能有助于患者应对病情。
