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Journal of Child Neurology
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Quality Care in Transverse Myelitis: A Responsive Protocol

Carrilin C. Trecker, BS

Johns Hopkins University School of Medicine, Baltimore, Maryland

Dana E. Kozubal

Johns Hopkins University School of Medicine, Baltimore, Maryland, dkozubal{at}jhu.edu

Megan Quigg, BA

Johns Hopkins University School of Medicine, Baltimore, Maryland

Edward Hammond, MD, MPH

Johns Hopkins University School of Medicine, Baltimore, Maryland

Chitra Krishnan, MHS

Johns Hopkins University School of Medicine, Baltimore, Maryland

Peter A. Sim, MD, FACEP

Victory Junction Gang Camp, Randleman, North Carolina

Adam I. Kaplin, MD, PhD

Johns Hopkins University School of Medicine, Baltimore, Maryland, akaplin{at}jhmi.edu

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.

Key Words: pediatric transverse myelitis • multidisciplinary center • patient satisfaction

This version was published on May 1, 2009

Journal of Child Neurology, Vol. 24, No. 5, 577-583 (2009)
DOI: 10.1177/0883073808325655
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