Measuring Quality of Life with Chiari I Malformation
Diane Mueller, ND, RN, FNP-BC
Measuring symptoms and their affect on the individual is often an elusive concept. The myriad of symptoms associated with CMI makes this endeavor even more challenging. There are many instruments in the English literature that measure symptoms and quality of life for specific disorders.
One of the earliest measures of quality of life was developed in 1975 by Gilson et al. called the Sickness Impact Profile. This instrument has been widely used for many medical disorders. Holly et al. (2009) published a review of assessment measures for individuals diagnosed with cervical degenerative disease. The Quality of life scale for lumbar spinal stenosis was developed by Sekiguchi (2011), which measures subjective reported symptoms and their impact on activities of daily living for individuals with lumbar stenosis.
Aliaga et al. (2012) proposed the Chicago Chiari Outcome Scale (CCOS). The authors performed a retrospective chart review utilizing the CCOS as a scoring method to assess outcomes among patients with CMI after surgery. The scale includes 4 categories which are assigned scores based on the provider’s evaluation of symptoms.
A search of the English literature revealed no Chiari/syringomyelia specific questionnaire which quantitatively measures subjective symptoms and quality of life. Mueller and Oro’ (2013) developed the Chiari Symptom Profile (CSP) in effort to quantitatively measure symptoms and outcome of treatment. The CSP is comprised of 57 items that the patient rates on a Likert-type scale from 0-4, depending on the frequency/severity of the symptom. The scale includes the realms of physical, social, psychological and functional. Validity and reliability were tested and showed statistical significance with Cronbach’s alpha of .958 (p=.0001). The CSP was shown to provide a reliable and valid quantitative measure of self-reported symptoms related to CMI/syringomyelia. The instrument is available to any practitioner who would be interested in its use.
References
Gilson B.S., Gilson J.S., et al. The Sickness Impact Profile: Development of an outcome measure of health care. American Journal of Public Health. 1975;65(12):1304-1310.
Holly L.T. et al. Functional outcomes assessment for cervical degenerative disc disease. Journal of Neurosurgery Spine. 2009;11:238-244.
Sekiguchi M. et al. Development and validation of a quality of life scale specific for lumbar spinal stenosis. Spine. 36(21):1407-1414.
Mueller D.M. & Oro’ J.J. The Chiari Symptom Profile: development and validation of a Chiari/Syringomyelia specific questionnaire. Journal of Neuroscience Nursing. 2013;45(4):205-210.