Psychometric Properties of the Participation Scale among Former Buruli Ulcer Patients in Ghana and Benin

Background: Buruli 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. Methods: Former 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. Results: In 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 20.08 to 0.79. With respect to construct validity, 4 out of 6 hypotheses were not rejected, though correlations between various constructs differed between countries. Conclusion: The 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

Persisting Social Participation Restrictions among Former Buruli Ulcer Patients in Ghana and Benin

Background: Buruli ulcer may induce severe disabilities impacting on a person's well-being and quality of life. Information about long-term disabilities and participation restrictions is scanty. The objective of this study was to gain insight into participation restrictions among former Buruli ulcer patients in Ghana and Benin. Methods: In this cross-sectional study, former Buruli ulcer patients were interviewed using the Participation Scale, the Buruli Ulcer Functional Limitation Score to measure functional limitations, and the Explanatory Model Interview Catalogue to measure perceived stigma. Healthy community controls were also interviewed using the Participation Scale. Trained native interviewers conducted the interviews. Former Buruli ulcer patients were eligible for inclusion if they had been treated between 2005 and 2011, had ended treatment at least 3 months before the interview, and were at least 15 years of age. Results: In total, 143 former Buruli ulcer patients and 106 community controls from Ghana and Benin were included in the study. Participation restrictions were experienced by 67 former patients (median score, 30, IQR; 23; 43) while 76 participated in social life without problems (median score 5, IQR; 2; 9). Most restrictions encountered related to employment. Linear regression showed being female, perceived stigma, functional limitations, and larger lesions (category II) as predictors of more participation restrictions. Conclusion: Persisting participation restrictions were experienced by former BU patients in Ghana and Benin. Most important predictors of participation restrictions were being female, perceived stigma, functional limitations and larger lesions

Baseline characteristics of former BU patients (<i>n</i> = 143) and controls (<i>n</i> = 106).

<p>*Ghana: 1 missing and 4 patients with more lesions included, Benin: 4 missing and 2 patients with more lesions,</p><p>**significant difference between Ghana and Benin, ‡ 1 missing.</p><p>Baseline characteristics of former BU patients (<i>n</i> = 143) and controls (<i>n</i> = 106).</p

Spearman's rank correlations, 95% confidence intervals and effect sizes for differences in correlations between the P-scale scores of former BU patients and relatives, and with functional limitations and stigma.

<p>Spearman's rank correlations, 95% confidence intervals and effect sizes for differences in correlations between the P-scale scores of former BU patients and relatives, and with functional limitations and stigma.</p

Percentages scoring not restricted, no, small, medium and large problem per question of the P-scale.

<p>Percentages scoring not restricted, no, small, medium and large problem per question of the P-scale.</p

Characteristics of former BU patients.

<p>*Mann Whitney U test, ‡Pearson chi-square or Fisher's exact test as appropriate.</p><p>Characteristics of former BU patients.</p

Results of linear regression analyses to statistically predict participation restrictions (n = 132).

<p>Lesion category I: lesions with cross-sectional diameter of less than 5 cm, lesion category II: lesions with 5–15 cm cross-sectional diameter, lesion category III: lesions with >15 cm cross-sectional diameter, on important sites or multiple lesions, BUFLS: functional limitations, EMIC: perceived stigma, * age was centered – 15 years of age.</p><p>Results of linear regression analyses to statistically predict participation restrictions (n = 132).</p