The ‘Impact on Participation and A utonomy’: 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 Participatio n and A utonomy’ (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. C ompletion 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’. A mong 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.

Keywords

autonomy multiple sclerosis out-patients participation questionnaire

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