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Risk Knowledge in Relapsing Multiple Sclerosis (RIKNO 1.0)--Development of an Outcome Instrument for Educational

C Heesen1, J Kasper2, K Fischer3

  • 1Institute of Neuroimmunology and MS Research (INIMS), University Medical Center Eppendorf, Hamburg, Germany; Dep. of Neurology, University Medical Center Eppendorf, Hamburg, Germany.

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Summary
This summary is machine-generated.

A new questionnaire, RIKNO 1.0, effectively measures risk knowledge in relapsing remitting Multiple Sclerosis (RRMS) patients after educational interventions, despite some items being challenging.

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Area of Science:

  • Neurology
  • Patient Education
  • Health Literacy

Background:

  • Shared decision-making requires adequate patient risk knowledge, yet assessment tools are scarce.
  • Multiple Sclerosis (MS) is a chronic inflammatory disease in young adults with evolving immunotherapies, making it ideal for studying patient involvement.

Purpose of the Study:

  • To develop and validate the Risk Knowledge (RIKNO) 1.0 questionnaire for assessing risk understanding in relapsing remitting MS (RRMS) patients.
  • To evaluate the questionnaire's responsiveness to patient education interventions.

Main Methods:

  • Developed RIKNO 1.0 based on an item bank and patient feedback on relevance.
  • Selected 14 multiple-choice items based on patient feedback and item difficulty, plus 5 based on expert opinion.
  • Administered RIKNO 1.0 as a primary outcome in a patient education trial with 192 early RRMS patients.

Main Results:

  • The RIKNO 1.0 questionnaire includes items with a mean difficulty of 0.58.
  • Patient scores on RIKNO 1.0 significantly increased from 10.6 to 12.4 post-intervention (p=0.0003).
  • Difficult items, particularly those on absolute risk reduction, were answered correctly by only 30% of patients even after education.

Conclusions:

  • RIKNO 1.0 is a responsive tool for assessing risk knowledge in RRMS patients undergoing educational interventions.
  • The questionnaire's responsiveness is demonstrated by score changes following education.
  • High item difficulty suggests areas for targeted patient education improvement.