Lacking a Primary Care Physician Is Associated With Increased Suffering in Patients With Severe Mental Illness.

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.

Patient-reported Chiari malformation type I symptoms and diagnostic experiences: a report from the national Conquer Chiari Patient Registry database.

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.

The impact of Chiari malformation on daily activities: A report from the national Conquer Chiari Patient Registry database.

BACKGROUND: Chiari malformation (CM) is characterized by herniation of the cerebellar tonsils into the cervical spine. While ample literature on CM exists for clinical and procedural aspects of the disease, few studies have measured the impact CM has on daily activities. OBJECTIVE: The objective of this study was to measure the impact that CM has on daily living activities. METHODS: Data was analyzed from 798 CM patients gathered by the national Conquer Chiari Patient Registry database. RESULTS: Results indicate CM is associated with negative impact on daily living and physical activities for patients, even those exhibiting mild symptoms. Participants with severe symptoms experience the greatest deficit with regards to daily living such as difficulty walking, driving, housecleaning and food preparation. CONCLUSIONS: As 96.1% of CM patients report impact in one or more areas of daily living, CM is classified as a disability according to 42 U.S. CODE § 12101 (Americans with Disabilities Act). The degree of self-reported CM symptom severity is strongly related to the frequency and extent of limitations in both physical and daily activities.