Evaluation of activity limitation and social participation, and the effects of reconstructive surgery in people with disability due to leprosy: a prospective cohort study

Abstract

Purpose. To assess how activity limitation and social participation of individuals with leprosy-related disability change over time, and to quantify the effect of reconstructive surgery.

Method. Individuals with disability due to leprosy who accepted invitations for assessment at a leprosy clinic between March and July 2007 were interviewed using the SALSA Scale (measuring activity limitation) and the Participation Scale (assessing social participation). All participants were offered reconstructive surgery. Follow-up interviews were done 1 year after the first interview or 1 year after surgery. The main outcomes were changes in SALSA score and Participation score. We used analysis of variance to identify the effects of independent factors on mean SALSA and Participation scores.

Results. We interviewed 222 participants, 15 of whom took up the offer of surgery and 207 who did not. Comparison of SALSA Scale scores at baseline and 1 year revealed that activity limitation did not significantly change over time in individuals who declined surgery; however, participants who had surgery showed a significant improvement at 1 year (p < 0.001). Social participation improved over time in both groups, but the difference was significant only in the non-surgery group (p < 0.001).

Conclusions. The findings suggest that reconstructive surgery has beneficial effects on functioning. Evaluation of the need for, and effect of, surgery in larger studies is recommended.

Keywords:

• Leprosy
• disability
• reconstructive surgery
• activity limitation
• social participation
• functioning
• prospective follow-up study

Acknowledgements

The Netherlands Leprosy Relief, The Leprosy Mission International and the Q.M. Gastmann-Wichers Foundation provided financial support for this study. We thank Roel Faber (Erasmus MC, University Medical Center Rotterdam) for developing a database, C Ruth Butlin (formerly The Leprosy Mission Bangladesh, Nilphamari) for advice in designing the research protocol, Gerard Borsboom (Erasmus MC, University Medical Center Rotterdam) for statistical support, and Hannah Brown (freelance) for editing the final version of the manuscript. We are indebted to the interviewers, the participants and the staff of the Leprosy Mission Bangladesh in Nilphamari and Rangpur districts for their cooperation in making this study possible. NvV, BB, DP, JFN, JPV, and JHR contributed to study conception and design. NvV, HAD, BB, DP, and JFN participated in study management, data collection, and/or data management. NvV, JPV, and JHR were responsible for statistical analysis, interpretation of data, and/or writing of the report. All authors reviewed and commented on a draft of the manuscript and gave final approval to submit for publication. The sponsors of the study had no role in study design, data collection, data analysis, data interpretation, writing of the report, or decision to submit for publication.

Declaration of interest

The Netherlands Leprosy Relief, The Leprosy Mission International and the Q.M. Gastmann-Wichers Foundation provided financial support for this study.