Chiari malformation (CM) is a condition in which cerebellar tonsillar ectopia may manifest with various clinical presentations. This study reports from the only national, online patient registry available, the symptoms, comorbid neurocognitive and psychological conditions, and diagnostic experiences of patients living with CM type I (CM I). The current research is one component of a large investigation designed to collect information from individuals with CM through the online Conquer Chiari Patient Registry questionnaire. Analyses included descriptive statistics to study body system impact and patient diagnostic experiences. Participants were 768 individuals with CM I and were predominantly female (86.8 %) and Caucasian (93.8 %) with an average age of 35 years. Pain was the most frequently reported symptom (76.69 %) experienced prior to diagnosis with headaches implicated most often (73.44 %). Neurocognitive comorbidities included memory difficulties (43.88 %) and aphasia (43.75 %) and psychological disorders such as depression (31.77 %) and anxiety disorders (19.92 %) were reported. Average time to diagnosis from first physician visit to diagnosis was 3.43 years, and only 8.46 % of patients had previous awareness of CM. CM I diagnosis was found incidentally for 24.87 % of participants. Common misdiagnoses were classified as psychological (19.26 %) and neurological (19.26 %). Fear was the most frequent emotion elicited at the time of correct diagnosis (42.19 %). CM I can be a challenging condition for patients and physicians, during both the search for diagnosis and management of symptoms. Patient and physician education about CM I may permit early intervention and the prevention of further deterioration and patient suffering.

No abstract

We evaluated the relationship between lack of a primary care physician (PCP) and patients with severe mental illness (SMI), who have poorer health and experience more suffering. Using a blinded retrospective record review of 137 patients with SMI, divided between inpatients (n = 70) and outpatients (n = 67), we compared the two groups to determine if lack of a PCP is associated with increased suffering and worse overall health. We included history of preventive services, having a PCP, and comorbid conditions. Multiple linear regressions determined the relationship between lacking a PCP and lifestyle problems, lack of preventive care, and Burden of Suffering. We found that in SMI patients, lack of a PCP is associated with increased lifestyle problems, lacking preventive care, increased Burden of Suffering and cervical dysplasia. Health policy changes are needed to improve outcomes for patients with SMI by increasing access to PCPs and preventive services.

No abstract