Psychological symptoms and Quality of Life in adults with Chiari malformation type I: an assessment by the Italian version of Chiari Symptom Profile.

Chiari malformation type I (CM-I) is a rare condition with physical and neurological manifestation changing across people. Being a chronic and debilitating disease, a comprehensive multidisciplinary approach is needed for evaluating patient’s experienced Quality of Life (QoL) and psychological correlates of CM. Objectives: The aim of this study was to develop the Italian adaptation of Chiari Symptom Profile (CSP), a questionnaire assessing the core symptoms of Chiari malformation and their impact on people’s lives. Secondly, the occurrence of anxiety/depression symptoms and associations with patient-reported QoL were explored. Methods: 172 adults with diagnosed CM-I (N=79 with neurosurgery) completed an online questionnaire measuring general QoL (WHOQOL-brief), disease-related QoL (CSP), and symptoms of anxiety/depression (HADS). Participant’s demographic and clinical data were also collected. Results: The Italian version of CSP showed excellent reliability both in total (Cronbach alpha = .97) and factorial scores (alphas from .87 to .95) assessing four domains of Chiari-related QoL (functional, physical, social, and psychological). For construct validity, significant correlations (p< .001) resulted among severity of CM symptoms, social and daily limitations assessed by CSP and general QoL. Participants’ age at neurosurgery and condition (with/without neurosurgery treatment) did not significantly impact QoL scores, but perceived QoL worsened with increasing age. Among participants, 32% reported clinical anxiety and 14% depression symptoms (with higher incidence of depression in non-operated participants). Participants with clinical anxiety/depression reported a worse QoL in all domains of CSP (functional, physical, social, and psychological). Conclusion: Findings suggest the need to include in CM treatment a continuous psychological support, identifying the patients most at risk who, in time, they may experience greater psychological suffering.