TY - JOUR
T1 - Quality care in transverse myelitis
T2 - A responsive protocol
AU - Trecker, Carrilin
AU - Kozubal, Dana E.
AU - Quigg, Megan
AU - Hammond, Edward
AU - Krishnan, Chitra
AU - Sim, Peter A.
AU - Kaplin, Adam I.
PY - 2009
Y1 - 2009
N2 - 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.
AB - 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.
KW - Multidisciplinary center
KW - Patient satisfaction
KW - Pediatric transverse myelitis
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U2 - 10.1177/0883073808325655
DO - 10.1177/0883073808325655
M3 - Article
C2 - 19211922
AN - SCOPUS:65549170470
VL - 24
SP - 577
EP - 583
JO - Journal of Child Neurology
JF - Journal of Child Neurology
SN - 0883-0738
IS - 5
ER -