Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination.

BACKGROUND: Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment. METHODS: We conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation. RESULTS: Overall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts. DISCUSSION: The majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment.

Population-based cancer registration in Indonesia.

Cancer is a major public health problem in Indonesia, becoming the 7th largest cause of death based on a national survey in 2007, accounting for 5.7 of all mortality. A cancer registry was started in 1970, but it was partial and was stopped mainly because no government body was responsible. Realizing the above situation, the Indonesian government established the Sub Directorate of Cancer Control within the Ministry of Health, with responsibility for developing a national cancer control program, including a cancer registry. A sustainable cancer registry was then started in 2007 within Jakarta Province, first hospital-based but then expanded to be population-based. Steps of cancer registration in Jakarta are data collection, data verification, data validation, data management and analysis, and data publication. Data collection is conducted by health facilities (hospitals, laboratories, primary health centers) at the district/municipal level, with reports to the provincial level. Data are collected passively by holding meetings every three months in the district/municipality. Verification of data is the responsibility of the medical doctor or pathologist in each data source. Data validation is conducted by a team in the cancer registry, consisting of district/municipal/province health officers, pathologists, and registrars. Data management and analyses are conducted by a cancer registry team at the provincial level, assisted by the national team. We use software named Indonesian Cancer Registry System (SRIKANDI) which is adopted from CanReg4 IARC. Data from the population-based cancer registry in Jakarta Province showed the leading cancers among females in 2005-2007 to be breast cancer, cervical cancer, ovarian cancer, colorectal cancer and among males are bronchus and lung cancer, colorectal cancer, liver cancer, pharyngeal cancer, and prostate cancer. The leading childhood cancers are leukaemia and retinoblastoma.