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Journal of Child Neurology
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Article

Quality Care in Transverse Myelitis: A Responsive Protocol

Carrilin C. Trecker, BS1, Dana E. Kozubal1, Megan Quigg, BA1, Edward Hammond, MD, MPH1, Chitra Krishnan, MHS1, Peter A. Sim, MD, FACEP2, and Adam I. Kaplin, MD, PhD1*

1 The Johns Hopkins University School of Medicine, Baltimore, Maryland
2 Victory Junction Gang Camp, Randleman, North Carolina

* To whom correspondence should be addressed. E-mail: akaplin{at}jhmi.edu.


  Abstract

This study was conducted to aid in the development of a multidisciplinary care center for patients with transverse myelitis. We surveyed the parents of 20 children diagnosed with transverse myelitis between the ages of 0.5 and 21 years to understand their experiences in navigating the health care system. We analyzed acute care events and long-term follow-up in relation to patient satisfaction. Results showed satisfactory ratings in the vicinity of 50% in key areas such as the articulation of a treatment plan. A significant disparity was found in the patients’ desire for specialty care and their ability to procure such care. In all, 90% of patients expressed a desire to consult with a psychiatrist, but only 25% were successful in making a visit, a 64% deficit; 70% of respondents also desired to see a gastroenterologist, with only 25% actually doing so, leaving a 43% gap. Recommendations and patient opinions regarding the creation of a collaborative care environment are noted. Research with a larger sample will further elucidate the needs in transverse myelitis patient care.

First published on February 11, 2009, doi:10.1177/0883073808325655

Journal of Child Neurology 2009;24:577.

A more recent version of this article appeared on May 1, 2009

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