Risk factors for participation restriction in leprosy and development of a screening tool to identify individuals at risk

The World Health Organisation International Classification of Functioning, Disability and Health defines participation as involvement in a life situation. Participation restrictions are problems experienced in any life situation, for example, in relationships or in employment. Our research explored risk factors for participation restrictions experienced by people affected by leprosy. Our objective was to develop a screening tool to identify individuals at risk. An initial round of qualitative fieldwork in eight centres in Nepal, India and Brazil identified 35 potential risk factors for participation restriction. These were then further assessed through quantitative fieldwork in six centres in India and Brazil. In all, 264 individuals receiving leprosy treatment or rehabilitation services made a retrospective assessment of their status at time of diagnosis. Their level of participation restriction was assessed using the Participation Scale. Regression analysis identified risk factors for participation restriction including fear of abandonment by family members (odds ratio 2.63, 95% CI 1.35-5.13) and hospitalization at diagnosis (3.98, 1.0-7.32). We recommend four consolidated items as the basis for a simple screening tool to identify individuals at risk. These are the physical impact of leprosy, an emotional response to the diagnosis, female gender and having little or no education. Such a tool may form the basis for a screening and referral procedure to identify newly diagnosed individuals at risk of participation restrictions and in need of actions that may prevent such restrictions.