1
40
2
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1007/s10072-015-2219-9" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10072-015-2219-9</a>
Pages
1617–1624
Issue
9
Volume
36
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Patient-reported Chiari malformation type I symptoms and diagnostic experiences: a report from the national Conquer Chiari Patient Registry database.
Publisher
An entity responsible for making the resource available
Neurological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
2015-09
Subject
The topic of the resource
ARNOLD-Chiari deformity; DIAGNOSTIC errors; MENTAL illness; SYMPTOMS; CAUCASIAN race – Health
Creator
An entity primarily responsible for making the resource
Fischbein Rebecca; Saling Julia; Marty Paige; Kropp Denise; Meeker James; Amerine Jenna; Chyatte Michelle
Description
An account of the resource
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. [ABSTRACT FROM AUTHOR]
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s10072-015-2219-9" target="_blank" rel="noreferrer noopener">10.1007/s10072-015-2219-9</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Amerine Jenna
ARNOLD-Chiari deformity
CAUCASIAN race – Health
Chyatte Michelle
College of Medicine
Department of Family & Community Medicine
Diagnostic Errors
Fischbein Rebecca
Kropp Denise
Marty Paige
Meeker James
mental illness
NEOMED College of Medicine
Neurological Sciences
Saling Julia
Symptoms
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1016/j.dhjo.2015.01.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.dhjo.2015.01.003</a>
Pages
521–526
Issue
4
Volume
8
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The impact of Chiari malformation on daily activities: A report from the national Conquer Chiari Patient Registry database.
Publisher
An entity responsible for making the resource available
Disability and health journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
2015-10
Subject
The topic of the resource
*Activities of Daily Living; *Disabled Persons; *Quality of Life; Adult; Arnold-Chiari malformation; Arnold-Chiari Malformation/classification/*complications; Automobile Driving; Daily living; Databases; Factual; Female; Food Handling; Housekeeping; Humans; Male; Middle Aged; Physical activities; Quality of life; Recreational activities; Registries; Severity of Illness Index; United States; Walking
Creator
An entity primarily responsible for making the resource
Meeker James; Amerine Jenna; Kropp Denise; Chyatte Michelle; Fischbein Rebecca
Description
An account of the resource
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 section sign 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.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.dhjo.2015.01.003" target="_blank" rel="noreferrer noopener">10.1016/j.dhjo.2015.01.003</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. All rights are retained by the journal listed under publisher and/or the creator(s).
*Activities of Daily Living
*Disabled Persons
*Quality of Life
2015
Adult
Amerine Jenna
Arnold-Chiari malformation
Arnold-Chiari Malformation/classification/*complications
Automobile Driving
Chyatte Michelle
College of Medicine
Daily living
Databases
Department of Family & Community Medicine
Disability and health journal
Factual
Female
Fischbein Rebecca
Food Handling
Housekeeping
Humans
Kropp Denise
Male
Meeker James
Middle Aged
NEOMED College of Medicine
Physical activities
Quality of Life
Recreational activities
Registries
Severity of Illness Index
United States
Walking