title: Developing a two-sided intervention to facilitate shared decision-making in haemophilia: decision boxes for clinicians and patient decision aids for patients.
abstract: BACKGROUND
  People with haemophilia face many treatment decisions, which are largely informed by evidence from observational studies. Without evidence-based 'best' treatment options, patient preferences play a large role in decisions regarding therapy. The shared decision-making (SDM) process allows patients and health care providers to make decisions collaboratively based on available evidence, and patient preferences. Decision tools can help the SDM process. The objective of this project was to develop two-sided decision tools, decision boxes for physicians and patient decision aids for patients, to facilitate SDM for treatment decisions in haemophilia.
  
  
  METHODS
  Development of the decision tools comprised three phases: topic selection, prototype development and usability testing with targeted end-users. Topics were selected using a Delphi survey. Tool prototypes were based on a previously validated framework and were informed by systematic literature reviews. Patients, through focus groups, and physicians, through interviews, reviewed the prototypes iteratively for comprehensibility and usability.
  
  
  RESULTS
  The chosen topics were: (i) prophylactic treatment: when to start and dosing, (ii) choosing factor source and (iii) immunotolerance induction: when to start and dosing. Intended end users (both health care providers and haemophilia patients and caregivers) were engaged in the development process. Overall perception of the decision tools was positive, and the purpose of using the tools was well received.
  
  
  CONCLUSIONS
  This study demonstrates the feasibility of developing decision tools for haemophilia treatment decisions. It also provides anecdotal evidence of positive perceptions of such tools. Future directions include assessment of the tools' practical value and impact on clinical practice.
authors.affiliation: Department of Clinical Epidemiology and Biostatistics, Health Information Research Unit, McMaster University, Hamilton, Ontario, Canada.
authors.forename: A
authors.initials: A
authors.lastname: Athale
authors.forename: A
authors.initials: A
authors.lastname: Giguere
authors.forename: A
authors.initials: A
authors.lastname: Barbara
authors.forename: S
authors.initials: S
authors.lastname: Krassova
authors.forename: A
authors.initials: A
authors.lastname: Iorio
mesh_terms: D003657:Decision Making; D003658:Decision Making, Computer-Assisted; D019468:Disease Management; D006282:Health Personnel; D006467:Hemophilia A / Q000628:therapy*; D002836:Hemophilia B / Q000628:therapy*; D006801:Humans; D008490:Medical Informatics / Q000379:methods*; D010358:Patient Participation; D010820:Physicians
keywords: congenital haemophilia; decision aids; intervention; shared decision-making