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

Loredana Benedetto, John J. Oró, Diane M. Mueller, Deborah Panarello, Erica Lo Turco, Gerardo Caruso, Antonino Francesco Germanò, Massimo Ingrassia


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.


Chiari malformation; Quality of Life; Assessment; Anxiety; Depression; Psychological intervention.

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