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

James Meeker, M.A., Jenna Amerine, M.P.H., C.H.E.S., Denise Kropp, B.S., C.C.R.P., Michelle Chyatte, Dr.P.H., M.P.H., Rebecca Fischbein, Ph.D.

Disability and Health Journal, October 2015, Volume 8, Issue 4, Pages 521–526

DOI: http://dx.doi.org/10.1016/j.dhjo.2015.01.003

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.