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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.

More information

Type
Journal Article
Author
Beeres DT
Horstman J
Tak P
Phillips RO
Abass KM
Werf T
Johnson RC
Sopoh GE
Zeeuw J
Dijkstra PU
Barogui YT
Stienstra Y
Year of Publication
2019
Journal
PLoS neglected tropical diseases
Volume
13
Issue
3
Number of Pages
e0007273
Language
eng
ISSN Number
1935-2735
DOI
10.1371/journal.pntd.0007273
Alternate Journal
PLoS Negl Trop Dis
Publication Language
eng