Making a more comprehensive Persian version of the Impact on Participation and Autonomy (IPA-p) scale; The Perspectives of Experts and MS patients

Abstract

Article InfoBackground: After all efforts made to introduce a valid and reliable tool for measuring the health of patients, such as MS sufferers, the concept of "participation and autonomy", which might be affected by the disease, has been introduced. An efficient health measurement should consider all different aspects of a patient's life. This research was conducted aimed at introducing a new aspect of the individual's life that seems necessary to be added to the health measurement scale of Persian-speaking MS patients. Materials and methods: In a comprehensive study, 10 specialists and 360 MS patients were recruited to help measure the validity and reliability of the Persian version of the impact on participation and autonomy (IPA) scale. More details are provided in the published paper. An important section of the findings derived from the data collected from experts and patients has been presented in this paper. Results: Further to the previous reports, the results showed that about 70% of the experts and 80% of the patients who responded to the relevant items stated that some questions should be added to the scale about the patients' ability to do their religious affairs. Conclusion: Based on what the experts (specialists) and respondents (MS patients) stated, it seems that at least a religious domain must be added to the Persian version of the IPA (IPA-p) scale if a more comprehensive IPA scale is required to be developed for the use among Persian-speaking patients.

A survey measuring participation and autonomy of Iranian stroke patients referring a university hospital, 2017

“…The fifth part is about autonomy in obtaining academic qualifications which includes 3 questions. The sixth part is about autonomy in the acquisition and preservation of a job and consists of seven questions; finally, there were 5 questions related to being active in religious affairs, which were added to the English version of IPA (IPA-e), based on the results obtained from a previous work on (13). The validity and reliability of the questionnaire was obtained in a similar study, where about 50% of public respondents reported their perception of their participation to be "good" or "very good," and 60 percent of the experts reported the ability of the IPA-p scale to be desirable and excellent.…”