Demoralizzazione, dignità e distress psichiatrico nella Sclerosi Multipla: uno studio osservazionale longitudinale

Introduction. Multiple Sclerosis (MS) is a chronic, inflammatory, demyelinating neurodegenerative disease of the Central Nervous System which, alongside neurological manifestations, frequently co-occurs with psychiatric disorders (Anxiety Disorders, Depressive Disorders) and psychopathological aspects. In patients with MS, various forms of existential suffering emerge, some characterized by the psychopathological dimension of Demoralization and by the perception of loss of one's own dignity. These aspects, although clinically significant, are often underestimated in routine neurological practice. The present study aims to evaluate psychiatric distress, depressive symptoms, demoralization, and dignity in patients with MS, investigating the evolution of these constructs between a baseline assessment and a follow-up. Materials and methods. Fifty-one patients diagnosed with MS (2017 revised McDonald criteria) who attended the MS neurology day hospital at Policlinico Umberto I, Sapienza University of Rome, were enrolled. Patients were evaluated at T0 and T1 (18 months after T0); 34 patients completed the longitudinal reassessment. Each patient was given the following Assessment Scales: the Brief Psychiatric Rating Scale (BPRS, 24-item version 4.0) filled out by the interviewer, the Patient Health Questionnaire-9 (PHQ-9), self-administered, the Demoralization Index (ID/Demoralization Scale by Kissane, 24 items) self-administered, and the Patient Dignity Inventory (PDI), self-administered. Sociodemographic and neurological variables (EDSS and subsystems), disease phenotype, disease duration, medical comorbidities were also collected, and the Frailty Index (FI) was calculated for each patient at T0. The psychiatric diagnosis was made according to DSM-5 criteria. Statistical analysis was based on non-parametric tests (Wilcoxon signed-rank) for within-subject comparisons, Spearman correlations, and linear regression models. Results At baseline assessment (T0), the average age of recruited patients was 43.8 years (SD ±11.9), 80.4% of participants were women, and the average disease duration was 11.4 years (SD ±9.8). Overall, 78.5% had 13 or more years of education, while the median EDSS score was 1.5 (IQR 1.75). The median FI was 0.09 (IQR 0.15; 99th percentile = 0.37), classifying 59% of patients as fit (FI ≤ 0.10), 20% as least fit (0.10 < FI ≤ 0.21), and 21% as frail (FI > 0.21). Mood Disorders affected 67% of patients, while Anxiety Disorders affected 31%. FI was significantly correlated with BPRS (p = 0.036), EDSS (p < 0.001), and age (p < 0.001). Psychiatric Diagnostic Orientation was correlated with age (p = 0.02), PHQ-9 (p = 0.05), ID (p = 0.01), and PDI (p = 0.049). The longitudinal analysis of 34 patients showed significant improvements at T1 in PHQ items 1+2 scores and the total BPRS score (p < 0.001), as well as a significant improvement in Psychiatric Diagnostic Orientation at T1 (p < 0.001). The mixed linear model revealed that FI is a significant predictor of improvement in BPRS score (p = 0.003). Discussion: This study outlines the demographic and psychological profiles of the cohort, revealing a baseline picture mainly characterized by depressive, anxiety, adjustment, and affective disorders, with lower frequencies of psychotic and bipolar disorders. The significant improvement in BPRS scores suggests that clinical management contributes to symptom reduction and diagnostic changes. On the contrary, a higher frailty index was found to be linked to worse outcomes on the BPRS scale. The modest improvement in the first part PHQ-9 scores, ID, and PDI highlights that monitoring global psychiatric symptoms (BPRS) alone might be insufficient, since the strong interconnection between depressive distress, demoralization, and loss of dignity suggests a common psychopathological core, partially independent of the classic psychiatric symptoms detected by the BPRS. The study confirms the high relevance of existential suffering, demoralization, and perceived loss of dignity in MS patients, even in stages of the disease with limited neurological disability. The data support the need for an integrated neurological and psychiatric approach, including psychotherapeutic-existential interventions aimed at improving perceived dignity, as part of the standard care for the MS patient.