title: The 'Impact on Participation and Autonomy': acceptability of the English version in a multiple sclerosis outpatient setting.
abstract: To elicit the opinion of multiple sclerosis (MS) patients about the acceptability of a newly designed participation questionnaire--the 'Impact on Participation and Autonomy' (IPA), 35 MS outpatients who had completed an English version of the IPA questionnaire (IPA-E) were interviewed. Patients were recruited consecutively from outpatients attending the MS clinic. They were invited to answer 15 short questions during a 20-minute interview after signing a consent form and completing the IPA-E questionnaire. Completion time of the IPA-E questionnaire was 19.3 +/- 4.7 minutes. Most respondents believed that the IPA-E items were easy or very easy to understand (83%), relevant (more than 74%), not embarrassing (more than 97%) and 94% considered that no items should be removed. Three additional topics were suggested: 'looking after children; 'the extent of information on current services'and information about 'treatment progress' Among the eight domains of the IPA, most respondents considered mobility to be the most important and education the least important. The IPA-E was found to be acceptable and relevant to a sample of MS outpatients, although it could have been enhanced by items on parental or family roles.
authors.affiliation: Division of Rehabilitation and Ageing, University of Nottingham School of Community Health Sciences, Nottingham, UK. mcxrvn@nottingham.ac.uk
authors.forename: Reza
authors.initials: R
authors.lastname: Vazirinejad
authors.forename: Jeanette M
authors.initials: JM
authors.lastname: Lilley
authors.forename: Christopher D
authors.initials: CD
authors.lastname: Ward
mesh_terms: D000328:Adult; D005260:Female; D006801:Humans; D007802:Language; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000523:psychology*; D010045:Outpatients / Q000523:psychology; D010358:Patient Participation; D026684:Personal Autonomy; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires / Q000592:standards*