title: Magnetic resonance imaging in multiple sclerosis--patients' experiences, information interests and responses to an education programme.
abstract: BACKGROUND
  Magnetic resonance imaging (MRI) is a key diagnostic and monitoring tool in multiple sclerosis (MS) management. However, many scientific uncertainties, especially concerning correlates to impairment and prognosis remain. Little is known about MS patients' experiences, knowledge, attitudes, and unmet information needs concerning MRI.
  
  
  METHODS
  We performed qualitative interviews (n = 5) and a survey (n = 104) with MS patients regarding MRI patient information, and basic MRI knowledge. Based on these findings an interactive training program of 2 hours was developed and piloted in n = 26 patients.
  
  
  RESULTS
  Interview analyses showed that patients often feel lost in the MRI scanner and left alone with MRI results and images while 90% of patients in the survey expressed a high interest in MRI education. Knowledge on MRI issues was fair with some important knowledge gaps. Major information interests were relevance of lesions as well as the prognostic and diagnostic value of MRI results. The education program was highly appreciated and resulted in a substantial knowledge increase. Patients reported that, based on the program, they felt more competent to engage in encounters with their physicians.
  
  
  CONCLUSIONS
  This work strongly supports the further development of an evidence-based MRI education program for MS patients to enhance participation in health-care.
authors.affiliation: Institute of Neuroimmunology and Clinical MS Research (INIMS) and Dep. of Neurology, UMC Hamburg Eppendorf, Hamburg, Germany.
authors.forename: Judith
authors.initials: J
authors.lastname: Brand
authors.affiliation: Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany.
authors.forename: Sascha
authors.initials: S
authors.lastname: Köpke
authors.affiliation: Institute of Neuroimmunology and Clinical MS Research (INIMS) and Dep. of Neurology, UMC Hamburg Eppendorf, Hamburg, Germany; Department of Primary Medical Care, UMC Hamburg Eppendorf, Hamburg, Germany.
authors.forename: Jürgen
authors.initials: J
authors.lastname: Kasper
authors.affiliation: Institute of Neuroimmunology and Clinical MS Research (INIMS) and Dep. of Neurology, UMC Hamburg Eppendorf, Hamburg, Germany; Unit of Health Sciences and Education, MIN Faculty, University of Hamburg, Hamburg, Germany.
authors.forename: Anne
authors.initials: A
authors.lastname: Rahn
authors.affiliation: Institute of Neuroimmunology and Clinical MS Research (INIMS) and Dep. of Neurology, UMC Hamburg Eppendorf, Hamburg, Germany; Unit of Health Sciences and Education, MIN Faculty, University of Hamburg, Hamburg, Germany.
authors.forename: Imke
authors.initials: I
authors.lastname: Backhus
authors.affiliation: Institute of Neuroimmunology and Clinical MS Research (INIMS) and Dep. of Neurology, UMC Hamburg Eppendorf, Hamburg, Germany.
authors.forename: Jana
authors.initials: J
authors.lastname: Poettgen
authors.affiliation: Institute of Neuroimmunology and Clinical MS Research (INIMS) and Dep. of Neurology, UMC Hamburg Eppendorf, Hamburg, Germany.
authors.forename: Jan-Patrick
authors.initials: JP
authors.lastname: Stellmann
authors.affiliation: MS Imaging Section, Department of Diagnostic and Interventional Neuroradiology, UMC Hamburg Eppendorf, Hamburg, Germany.
authors.forename: Susanne
authors.initials: S
authors.lastname: Siemonsen
authors.affiliation: Institute of Neuroimmunology and Clinical MS Research (INIMS) and Dep. of Neurology, UMC Hamburg Eppendorf, Hamburg, Germany.
authors.forename: Christoph
authors.initials: C
authors.lastname: Heesen
mesh_terms: D000328:Adult; D003625:Data Collection / Q000379:methods / Q000706:statistics & numerical data; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008279:Magnetic Resonance Imaging / Q000379:methods*; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000175:diagnosis*; D010353:Patient Education as Topic; D010865:Pilot Projects; D015397:Program Evaluation / Q000706:statistics & numerical data; D036301:Qualitative Research; D011795:Surveys and Questionnaires