Evaluation of quality of life parameters in patients who have syringomyelia

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

“…4 Also consistent with prior research CM greatly impacts physical efficacy, translating to an inability to perform daily living activities. 11 The degree of selfreported symptom severity increases with greater extent of physical limitations. However, patients reporting mild CM symptoms are far less likely to experience negative daily living impact, although findings indicate one or more aspects of their physical or recreational life may have to be modified to adjust for the disorder.…”

“…2 Currently the focus on CM research resides primarily on detection, classification and surgical treatment of the disorder. 2,8e10 While studies have been conducted examining pre and post-operative quality of life among CM patients, notably Mueller and Oro 1 and Sixt et al, 11 the primary focus has been largely confined to detailing symptom typology and severity. Furthermore, prior CM research 1,11 examining quality of life has been conducted using only limited size datasets.…”

“…2,8e10 While studies have been conducted examining pre and post-operative quality of life among CM patients, notably Mueller and Oro 1 and Sixt et al, 11 the primary focus has been largely confined to detailing symptom typology and severity. Furthermore, prior CM research 1,11 examining quality of life has been conducted using only limited size datasets. Suggesting the possibility that CM is a disability, Jenkinson et al 12 found that even with intervention, the prognosis for independent living among patient with CM was poor.…”

“…Suggesting the possibility that CM is a disability, Jenkinson et al 12 found that even with intervention, the prognosis for independent living among patient with CM was poor. Further indicating the severity of the disorder, Sixt,11 reports that CM symptoms generally result in a lower quality of life for patients akin to other chronic diseases including cancer, diabetes, and paresis. Despite research on the range of CM symptoms, gaps exist in understanding how these symptoms influence the patients' ability to perform and enjoy daily activities.…”

Are Established Methods of Physiotherapeutic Management for Long‐term Neurological Conditions Applicable to ‘Orphan’ Conditions such as Syringomyelia?

“…Symptom persistence or re‐occurrence is not uncommon post‐surgery (Holly and Batzdorf, ), while quality of life appears to be independent of surgical management. This is a significant finding given quality of life measures are argued to provide the optimal criterion with which to tackle therapy decisions (Sixt et al ., ). Similar variations and controversy exist within other long‐term neurological conditions.…”