Revised estimates of leprosy disability weights for assessing the global burden of disease: A systematic review and individual patient data meta-analysis.

BACKGROUND: Leprosy is a chronic bacterial infection caused by Mycobacterium leprae, which may lead to physical disability, stigma, and discrimination. The chronicity of the disease and disabilities are the prime contributors to the disease burden of leprosy. The current figures of the disease burden in the 2017 global burden of disease study, however, are considered to be under-estimated. In this study, we aimed to systematically review the literature and perform individual patient data meta-analysis to estimate new disability weights for leprosy, using Health-Related Quality of Life (HRQOL) data. METHODOLOGY/PRINCIPAL FINDINGS: The search strategy included all major databases with no restriction on language, setting, study design, or year of publication. Studies on human populations that have been affected by leprosy and recorded the HRQOL with the Short form tool, were included. A consortium was formed with authors who could share the anonymous individual-level data of their study. Mean disability weight estimates, sorted by the grade of leprosy disability as defined by WHO, were estimated for individual participant data and pooled using multivariate random-effects meta-analysis. Eight out of 14 studies from the review were included in the meta-analysis due to the availability of individual-level data (667 individuals). The overall estimated disability weight for grade 2 disability was 0.26 (95%CI: 0.18-0.34). For grade 1 disability the estimated weight was 0.19 (95%CI: 0.13-0.26) and for grade 0 disability it was 0.13 (95%CI: 0.06-0.19). The revised disability weight for grade 2 leprosy disability is four times higher than the published GBD 2017 weights for leprosy and the grade 1 disability weight is nearly twenty times higher. CONCLUSIONS/SIGNIFICANCE: The global burden of leprosy is grossly underestimated. Revision of the current disability weights and inclusion of disability caused in individuals with grade 0 leprosy disability will contribute towards a more precise estimation of the global burden of leprosy.

Revised estimates of leprosy disability weights for assessing the global burden of disease: a systematic review and individual patient data meta-analysis

Leprosy is a chronic, disabling disease that causes various kinds of disability in the affected person. This includes physical impairment, activity limitation, and participation restriction. However, the published global burden of disease estimates for leprosy is considered to be a gross under-estimation. Disability weights form an integral component in the calculation of the burden estimates. But the methodology for calculation of the weights focuses only on physical impairment and lacks the perspective of the patient. In this study, we systematically reviewed the literature and performed an individual patient data meta analysis for revising the disability weights for leprosy using domain scores from health related quality of life instruments. The domains of these instruments cover all aspects of disability from a patient's perspective. We found that the revised weights were considerably higher than the current weights, and were more reflective of the actual disability caused by leprosy. We also found that for individuals without any severe disability due to leprosy (grade 0), they still experience comparable suffering. Revision of the current disability weights and inclusion of the disability caused in grade 0 individuals will contribute towards better estimation of the global burden of leprosy.

[An example of the socio-economic rehabilitation program for ex-leprosy patients in Vietnam and its evaluation by the patients].

One of the leprosy treatment centers (hospital X) in Vietnam offers loan programs to start work as part of the socio-economic rehabilitation program for ex-leprosy patients. The aim of this study is to examine and evaluate the contents of the program from the ex-leprosy patients' perspective. The interview group was sub-divided into three groups: male/female and the younger group. A focus group interview method was used to collect qualitative data. The participant program group revealed that their income increased and their health condition improved; moreover, they evaluated the program highly as they can borrow business loan at no interest. Meanwhile, the participants were challenged with a few problems: the frequency in the illness of the livestock and the forcible discounting in the livestock's price by the customers who use the excuse that the livestock has been raised by ex-leprosy patients. The younger group had concerns regarding the program; they were worried about the repayment of the business loan. Both groups noted points to improve the current program especially in terms of changing the loan repayment schedule and loan volume. Therefore, the program has to be adapted to the needs of ex-leprosy patients.

[Quality of life of leprosy patients' group in Vietnam].

Vietnam has achieved WHO's leprosy elimination goal at a national level, but there are a lot ofex-leprosy patients who have severe physical disabilities in the leprosy treatment centers and resettlement villages. The purpose of this study is to analyze the quality of life (QOL) of ex-leprosy patients in Vietnam. The study was conducted in two leprosy treatment centers in Vietnam. The SF-36v2 QOL survey was used to evaluate the leprosy patients' health related conditions, and as a comparison group, SF-36v2 QOL survey was provided to a random group from the general population to measure the general groups' health related conditions. For those participants aged from 10 to 29 years old, the patients' group scored lower than the general group in each of the following categories; Role physical, Bodily pain, General health perceptions, Vitality, Social functioning, Role emotional. On the other hand, middle aged and elderly participants were found to show no significant difference between the patients' group and the general group. In comparing the two leprosy treatment centers, the score of Role physical and Role emotional were significantly higher in the leprosy treatment center where vocational training programs for leprosy patients are offered. From these results, the use of vocational training program is one of the effective methods for improving the QOL of the patients' group.