title: Risk Knowledge in Relapsing Multiple Sclerosis (RIKNO 1.0)--Development of an Outcome Instrument for Educational Interventions.
abstract: BACKGROUND
  Adequate risk knowledge of patients is a prerequisite for shared decision making but few attempts have been made to develop assessment tools. Multiple Sclerosis (MS) is a chronic inflammatory disease of young adults with an increasing number of partially effective immunotherapies and therefore a paradigmatic disease to study patient involvement.
  
  
  OBJECTIVE
  Based on an item bank of MS risk knowledge items and patient feedback including perceived relevance we developed a risk knowledge questionnaire for relapsing remitting (RR) MS (RIKNO 1.0) which was a primary outcome measure in a patient education trial (192 early RRMS patients).
  
  
  RESULTS
  Fourteen of the RIKNO 1.0 multiple-choice items were selected based on patient perceived relevance and item difficulty indices, and five on expert opinion. Mean item difficulty was 0.58, ranging from 0.14 to 0.79. Mean RIKNO 1.0 score increased after the educational intervention from 10.6 to 12.4 (p = 0.0003). Selected items were particularly difficult (e.g. those on absolute risk reductions of having a second relapse) and were answered correctly in only 30% of the patients, even after the intervention.
  
  
  CONCLUSIONS
  Despite its high difficulty, RIKNO 1.0 is a responsive instrument to assess risk knowledge in RRMS patients participating in educational interventions.
authors.affiliation: Institute of Neuroimmunology and MS Research (INIMS), University Medical Center Eppendorf, Hamburg, Germany; Dep. of Neurology, University Medical Center Eppendorf, Hamburg, Germany.
authors.forename: C
authors.initials: C
authors.lastname: Heesen
authors.affiliation: Institute of Neuroimmunology and MS Research (INIMS), University Medical Center Eppendorf, Hamburg, Germany; Department of Health and Caring Sciences, Faculty of Health Sciences, University of Tromsø, Tromsø, Norway.
authors.forename: J
authors.initials: J
authors.lastname: Kasper
authors.affiliation: Institute of Neuroimmunology and MS Research (INIMS), University Medical Center Eppendorf, Hamburg, Germany.
authors.forename: K
authors.initials: K
authors.lastname: Fischer
authors.affiliation: Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany.
authors.forename: S
authors.initials: S
authors.lastname: Köpke
authors.affiliation: Institute of Neuroimmunology and MS Research (INIMS), University Medical Center Eppendorf, Hamburg, Germany; Unit of Health Sciences and Education, MIN Faculty, University of Hamburg, Hamburg, Germany.
authors.forename: A
authors.initials: A
authors.lastname: Rahn
authors.affiliation: Institute of Neuroimmunology and MS Research (INIMS), University Medical Center Eppendorf, Hamburg, Germany.
authors.forename: I
authors.initials: I
authors.lastname: Backhus
authors.affiliation: Institute of Neuroimmunology and MS Research (INIMS), University Medical Center Eppendorf, Hamburg, Germany.
authors.forename: J
authors.initials: J
authors.lastname: Poettgen
authors.affiliation: Department of Neurology, West-Tallinn Central Hospital, Tallinn, Estonia.
authors.forename: L
authors.initials: L
authors.lastname: Vahter
authors.affiliation: Institute of Neurology, Clinical Center of Serbia, University of Belgrade, Belgrade, Serbia.
authors.forename: J
authors.initials: J
authors.lastname: Drulovic
authors.affiliation: National MS-Centrum, Melsbroek, Belgium.
authors.forename: A
authors.initials: A
authors.lastname: Van Nunen
authors.affiliation: Department of Neurology, Ataturk Training and Research Hospital, Faculty of Medicine, Izmir, Turkey.
authors.forename: Y
authors.initials: Y
authors.lastname: Beckmann
authors.affiliation: Institute of Neuroimmunology and MS Research (INIMS), University Medical Center Eppendorf, Hamburg, Germany.
authors.forename: K
authors.initials: K
authors.lastname: Liethmann
authors.affiliation: Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Giordano
authors.affiliation: Psychlinx, Sydney, Australia.
authors.forename: G
authors.initials: G
authors.lastname: Fulcher
authors.affiliation: Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Solari
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020529:Multiple Sclerosis, Relapsing-Remitting / Q000628:therapy*; D017063:Outcome Assessment, Health Care; D010353:Patient Education as Topic; D010865:Pilot Projects; D012306:Risk; D011795:Surveys and Questionnaires; D055815:Young Adult