Research PaperThe impact of Chiari malformation on daily activities: A report from the national Conquer Chiari Patient Registry database
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.
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Financial support: This research was funded by a grant from the Conquer Chiari Research Foundation, 34545.
Conflict of interest: None.