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Development of Participation Scale addressing participation restrictions in children who suffered from Buruli Ulcer in Benin and Ghana

(2016) Horstman, J. (Jacolien)

Introduction: Buruli Ulcer (BU) is a debilitating skin disease caused by Mycobacterium ulcerans and when left untreated often results in scarring and retraction of the area and can lead to permanent disability.
Objectives: To develop an adequate questionnaire assessing possible participation restrictions in former BU patients younger than 15 years old in Benin and Ghana.
Methods: The research is divided into phases. Phase I consists of item collection by means interviews and observation, item selection and item reduction corresponding with the International Classification of Functioning, Disability and Health ICF domains. Phase II consists of a pilot study aiming to test the comprehensibility, feasibility, relevance and acceptability of the draft questionnaire 58 participants in Benin. Phase III consists of testing content validity, reactivity and discrimination of the new developed scale by means of appropriate statistical methods among 109 participants in Ghana.
Results: In Phase I a draft questionnaire was developed with 25 questions. Testing in Phase II resulted in the elimination of 16 of the 25 questions. The 7 questions, with an internal consistency, Cronbach's alpha of .539 were used for further testing Phase III. 73 (63%) participants score 0 on the Participation Scale. The mean of participants scoring > 0 is 7.772 and the median 5.00 with highest possible total score on the P-scale being 35. Gender is an independent factor, with females having higher outcomes.
Conclusion: A measure is developed to determine participation restrictions in former BU below 15 years. It is the first time to establish that this group of patients face participation restrictions. Further research is required to determine cut-off score, enhancing the questionnaire validity and reliability. Moreover research is to determine the adequate methods and programmes to reduce participation restrictions in this patient group.

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