Abstract
BackgroundBuruli ulcer is a stigmatising disease treated with antibiotics and wound care, and sometimes surgical intervention is necessary. Permanent limitations in daily activities are a common long term consequence. It is unknown to what extent patients perceive problems in participation in social activities. The psychometric properties of the Participation Scale used in other disabling diseases, such as leprosy, was assessed for use in former Buruli ulcer patients.MethodsFormer Buruli ulcer patients in Ghana and Benin, their relatives, and healthy community controls were interviewed using the Participation Scale, Buruli Ulcer Functional Limitation Score, and the Explanatory Model Interview Catalogue to measure stigma. The Participation Scale was tested for the following psychometric properties: discrimination, floor and ceiling effects, internal consistency, inter-item correlation, item-total correlation and construct validity.ResultsIn total 386 participants (143 former Buruli ulcer patients with their relatives (137) and 106 community controls) were included in the study. The Participation Scale displayed good discrimination between former Buruli ulcer patients and healthy community controls. No floor and ceiling effects were found. Internal consistency (Cronbach's alpha) was 0.88. In Ghana, mean inter-item correlation of 0.29 and item-total correlations ranging from 0.10 to 0.69 were found while in Benin, a mean inter-item correlation of 0.28 was reported with item-total correlations ranging from −0.08 to 0.79. With respect to construct validity, 4 out of 6 hypotheses were not rejected, though correlations between various constructs differed between countries.ConclusionThe results indicate the Participation Scale has acceptable psychometric properties and can be used for Buruli ulcer patients in Ghana and Benin. Future studies can use this Participation Scale to evaluate the long term restrictions in participation in daily social activities of former BU patients.
Highlights
Buruli ulcer (BU) is a neglected tropical disease caused by Mycobacterium ulcerans (MU) and has been reported in more than 30 countries predominantly in tropical or subtropical areas [1]
We included at least 50 healthy community controls in each of the two countries to test the discriminative potential of the Participation Scale (P-scale)
To strive for an equal distribution in patients and controls regarding location, age and sex, healthy community controls were recruited from villages located in the study area; we attempted to have these control participants match with our former patients for age (+5/25 years) and sex
Summary
Buruli ulcer (BU) is a neglected tropical disease caused by Mycobacterium ulcerans (MU) and has been reported in more than 30 countries predominantly in tropical or subtropical areas [1]. BU affects skin, subcutaneous tissue, muscles and sometimes bone resulting in scarring, deformities, and contractures; sometimes, amputation is necessary [4,5]. This in turn may lead to long-term physical disability such as restriction in movement of joints [6] and functional limitation [7]. Apart from these problems, stigmatisation due to superstitious beliefs or inappropriate or delayed treatment may lead to considerable impact on functioning in social life [8,9], such as change in occupation, unemployment, school dropout, and economic burden [10,11]. The psychometric properties of the Participation Scale used in other disabling diseases, such as leprosy, was assessed for use in former Buruli ulcer patients
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