TY - JOUR
T1 - New onset transverse myelitis diagnostic accuracy and patient experiences
AU - Greenberg, Benjamin M.
AU - Krishnan, Chitra
AU - Harder, Lana
N1 - Funding Information:
Lana Harder, Ph.D. has received grant funding from The National Multiple Sclerosis Society and consulting fees from Valerion and Ionis. Dr. Harder is a non-paid member of the Transverse Myelitis Association Board of Directors
Funding Information:
Benjamin M. Greenberg, MD, MHS has received grant funding from The Transverse Myelitis Association, PCORI, NIH, NMSS, Medday, Chugai, Medimmune, Genentech and consulting fees from Alexion, Novartis and EMD Serono. Dr. Greenberg is a non-paid member of the Transverse Myelitis Association Board of Directors
Publisher Copyright:
© 2019
PY - 2019/5
Y1 - 2019/5
N2 - Importance: Patients afflicted with rare diseases often have a delay in diagnosis and treatment. Understanding the prevalence and impact of delayed diagnosis in transverse myelitis could trigger directed educational initiatives to increase clinician awareness and improve care. Objective: To determine if symptoms at onset or care provider initially approached was associated with time to diagnosis, treatment or outcome in patients with transverse myelitis. Design: This was an online patient and caregiver standardized survey to collect data about the initial medical experience. Patients were recruited through social media to complete a survey about initial symptoms, care provider approached for diagnosis, first events (hospital admission, testing, sent home, etc.), first diagnosis, time to treatment and outcomes. The data was collected by an independent, non-profit patient advocacy organization (The Transverse Myelitis Association) and provided to researchers for analysis. Setting: This was an online survey of a prevalent cohort of individuals diagnosis with transverse myelitis. Participants: Patients with various autoimmune disorders responded to the survey. These included patients with multiple sclerosis, neuromyelitis optica, acute disseminated encephalomyelitis and idiopathic transverse myelitis. Only data about patients, greater than a year of age, with a diagnosis of transverse myelitis were included in the study.
AB - Importance: Patients afflicted with rare diseases often have a delay in diagnosis and treatment. Understanding the prevalence and impact of delayed diagnosis in transverse myelitis could trigger directed educational initiatives to increase clinician awareness and improve care. Objective: To determine if symptoms at onset or care provider initially approached was associated with time to diagnosis, treatment or outcome in patients with transverse myelitis. Design: This was an online patient and caregiver standardized survey to collect data about the initial medical experience. Patients were recruited through social media to complete a survey about initial symptoms, care provider approached for diagnosis, first events (hospital admission, testing, sent home, etc.), first diagnosis, time to treatment and outcomes. The data was collected by an independent, non-profit patient advocacy organization (The Transverse Myelitis Association) and provided to researchers for analysis. Setting: This was an online survey of a prevalent cohort of individuals diagnosis with transverse myelitis. Participants: Patients with various autoimmune disorders responded to the survey. These included patients with multiple sclerosis, neuromyelitis optica, acute disseminated encephalomyelitis and idiopathic transverse myelitis. Only data about patients, greater than a year of age, with a diagnosis of transverse myelitis were included in the study.
KW - Diagnosis
KW - Outcomes
KW - Transverse myelitis
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U2 - 10.1016/j.msard.2019.01.046
DO - 10.1016/j.msard.2019.01.046
M3 - Article
C2 - 30738277
AN - SCOPUS:85061055475
SN - 2211-0348
VL - 30
SP - 42
EP - 44
JO - Multiple Sclerosis and Related Disorders
JF - Multiple Sclerosis and Related Disorders
ER -