title: Multinational development of a questionnaire assessing patient satisfaction with anticoagulant treatment: the 'Perception of Anticoagulant Treatment Questionnaire' (PACT-Q).
abstract: BACKGROUND
  The side effects and burden of anticoagulant treatments may contribute to poor compliance and consequently to treatment failure. A specific questionnaire is necessary to assess patients' needs and their perceptions of anticoagulant treatment.
  
  
  METHODS
  A conceptual model of expectation and satisfaction with anticoagulant treatment was designed by an advisory board and used to guide patient (n = 31) and clinician (n = 17) interviews in French, US English and Dutch. Patients had either atrial fibrillation (AF), deep venous thrombosis (DVT), or pulmonary embolism (PE). Following interviews, three PACT-Q language versions were developed simultaneously and further pilot-tested by 19 patients. Linguistic validations were performed for additional language versions.
  
  
  RESULTS
  Initial concepts were developed to cover three areas of interest: 'Treatment', 'Disease and Complications' and 'Information about disease and anticoagulant treatment'. After clinician and patient interviews, concepts were further refined into four domains and 17 concepts; test versions of the PACT-Q were then created simultaneously in three languages, each containing 27 items grouped into four domains: "Treatment Expectations" (7 items), "Convenience" (11 items), "Burden of Disease and Treatment" (2 items) and "Anticoagulant Treatment Satisfaction" (7 items). No item was deleted or added after pilot testing as patients found the PACT-Q easy to understand and appropriate in length in all languages. The PACT-Q was divided into two parts: the first part to measure the expectations and the second to measure the convenience, burden and treatment satisfaction, for evaluation prior to and after anticoagulant treatment, respectively. Eleven additional language versions were linguistically validated.
  
  
  CONCLUSIONS
  The PACT-Q has been rigorously developed and linguistically validated. It is available in 14 languages for use with thromboembolic patients, including AF, PE and DVT patients. Its validation and psychometric properties have been tested and are presented in a separate manuscript.
authors.affiliation: Department of Epidemiology, Care and Public Health Research Institutes, University of Maastricht, the Netherlands. mh.prins@epid.unimaas.nl
authors.forename: Martin H
authors.initials: MH
authors.lastname: Prins
authors.forename: Alexia
authors.initials: A
authors.lastname: Marrel
authors.forename: Paulo
authors.initials: P
authors.lastname: Carita
authors.forename: David
authors.initials: D
authors.lastname: Anderson
authors.forename: Marie-Germaine
authors.initials: MG
authors.lastname: Bousser
authors.forename: Harry
authors.initials: H
authors.lastname: Crijns
authors.forename: Silla
authors.initials: S
authors.lastname: Consoli
authors.forename: Benoit
authors.initials: B
authors.lastname: Arnould
mesh_terms: D000328:Adult; D000368:Aged; D000925:Anticoagulants / Q000009:adverse effects*; D001281:Atrial Fibrillation / Q000188:drug therapy; D017281:Cost of Illness; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D007802:Language; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D011594:Psychometrics; D011655:Pulmonary Embolism / Q000517:prevention & control; D011788:Quality of Life / Q000523:psychology*; D055502:Secondary Prevention; D011795:Surveys and Questionnaires; D020246:Venous Thrombosis / Q000517:prevention & control
chemical_list: D000925:Anticoagulants