The paediatric participation scale measuring participation restrictions among former Buruli Ulcer patients under the age of 15 in Ghana and Benin: Development and first validation results

Abstract

Background

Buruli Ulcer (BU) is a neglected tropical disease caused by Mycobacterium ulcerans. Former BU patients may experience participation restrictions due to physical limitations, stigmatization and other social factors. A scale that measures participation restrictions among children, who represent almost half of the affected population, has not been developed yet. Here, we present the development of a scale that measures participation restrictions in former BU paediatric patients, the psychometric properties of this scale and the scales’ results.

Methods

Items were selected and a scale was developed based on interviews with health care workers and former BU patients in and around the BU treatment centre in Lalo, Benin. Construct validity was tested using six a priori formulated hypotheses. Former BU patients under 15 years of age who received treatment in one of the BU treatment centres in Ghana and Benin between 2007–2012 were interviewed.

Results

A feasible 16-item scale that measures the concept of participation among children under 15 years of age was developed. In total, 109 (Ghana) and 90 (Benin) former BU patients were interviewed between 2012–2017. Five construct validity hypotheses were confirmed of which 2 hypotheses related to associations with existing questionnaires were statistically significant (p<0.05).

In Ghana 77% of the former patients had a Paediatric Participation (PP) scale score of 0 compared to 22% in Benin. More severe lesions related to BU were seen in Benin. Most of the reported participation problems were related to sports, mainly in playing games with others, going to the playfield and doing sports at school.

Conclusion

The preliminary results of the PP-scale validation are promising but further validation is needed. The developed PP-scale may be valid for use in patients with more severe BU lesions. This is the first research to confirm that former BU patients under 15-year face participation restrictions in important aspects of their lives.

Author summary

Buruli Ulcer is a neglected tropical disease caused by infection with Mycobacterium ulcerans. While treatment has largely improved, former BU patients may experience participation restrictions after treatment, due to physical limitations, stigmatization or other social factors.

With more than half of the BU patient population in Africa being children, a scale that measures participation restrictions among former paediatric BU patients is relevant but has not been developed yet. Here, we present a scale that measures participation restrictions among former BU patients under the age of 15 year that is suitable for low-income settings. The 16-item scale was developed in Benin and tested in both Ghana and Benin. The scale shows good performance and may be used for several diseases that occur in similar settings and result in disabilities (both physical and/or social).