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

https://doi.org/10.1016/j.dhjo.2015.01.003Get rights and content

Abstract

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.

Section snippets

Methods

This study quantitatively analyzed data collected and managed by the Conquer Chiari Foundation, a non-profit 501 (c)(3) organization dedicated to raising awareness and researching CM and syringomyelia. This study was approved by the Institutional Review Boards of the Northeast Ohio Medical University and The University of Akron.

Results

Participants in this sample population were predominately female (86.8%). The average respondent age was 40.8 years. First onset of CM symptoms was 20.5 years of age. The vast majority of persons in the database were indicated to be white or white-Hispanic (90.0%). The next largest racial and ethnic category reported were American Indian (3.9%). Only 2.1% of respondents identified as black or African American or black Hispanic. Asian, which contains Asian Indian, Chinese, Fillipino, Japanese,

Discussion

Similar to previous studies our sample population was predominately Caucasian females of Chiari Type I and age of symptom onset within the range of 19–45 years old.4 Also consistent with prior research CM greatly impacts physical efficacy, translating to an inability to perform daily living activities.11 The degree of self-reported symptom severity increases with greater extent of physical limitations. However, patients reporting mild CM symptoms are far less likely to experience negative daily

Conclusion

The impact CM has on daily activities can be debilitating. Almost all patients with CM experience lost capacity for daily activities even if presenting with minimal symptoms. Additionally, patient mobility—both physical and transportation utilization—can be compromised by CM, potentially leading to loss of the ability to live independently. As such, future research investigating the social vulnerabilities of patients with CM, ranging from social isolation, dependence on family member assistance

Acknowledgments

We wish to thank the patients and caregivers of patients with CM who provided information on the registry. We also wish to thank the Conquer Chiari Research Foundation and especially Rick Labuda who designed the patient registry and recruited CM patient participants. Without his efforts this research would not be possible.

References (15)

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Financial support: This research was funded by a grant from the Conquer Chiari Research Foundation, 34545.

Conflict of interest: None.

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