New onset transverse myelitis diagnostic accuracy and patient experiences

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
Pages (from-to)42-44
Number of pages3
JournalMultiple Sclerosis and Related Disorders
Volume30
DOIs
StatePublished - May 1 2019

Fingerprint

Transverse Myelitis
Acute Disseminated Encephalomyelitis
Neuromyelitis Optica
Social Media
Patient Advocacy
Delayed Diagnosis
Rare Diseases
Caregivers
Multiple Sclerosis
Research Personnel
Organizations
Surveys and Questionnaires

Keywords

  • Diagnosis
  • Outcomes
  • Transverse myelitis

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

Cite this

New onset transverse myelitis diagnostic accuracy and patient experiences. / Greenberg, Benjamin; Krishnan, Chitra; Harder, Lana L.

In: Multiple Sclerosis and Related Disorders, Vol. 30, 01.05.2019, p. 42-44.

Research output: Contribution to journalArticle

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