Social implications of leprosy in the Netherlands - stigma among ex-leprosy patients in a non-endemic setting

Contains fulltext : 97356.pdf (publisher's version ) (Open Access)BACKGROUND: In the Netherlands, leprosy is a rare and non-endemic disease, still occurring as an 'import disease'. Moreover a considerable group of people affected by leprosy, originating mainly from the former Dutch colonies, suffer from neuropathic complications. This study investigates the social implications of leprosy for those affected in the Netherlands. METHODS: Thirty-one people affected were interviewed as well as six medical leprosy experts. The social implications were measured by means of semi-structured interviews and the Participation Scale. RESULTS: Self-stigma, shame and secrecy were often reported. Discrimination and stigmatisation of ex-leprosy patients by people around them seems a less frequent problem. Yet, people affected by leprosy seem to be a forgotten group with a high social burden due to low self-esteem and reduced social participation. Medical experts do not seem to be aware of the severity of leprosy-related forms of stigma in their patients. Ex-leprosy patients lack sound disease-related information and support groups. Due to the low incidence and as a consequence, the lack of awareness among doctors, leprosy patients in the Netherlands are faced with substantial diagnostic delay (mean delay 1-8 years). CONCLUSIONS: Leprosy and its stigma affect the social lives of patients, even in a non-endemic area such as the Netherlands. Almost all respondents were affected by self-stigma. There is a need for 1) more information and support groups for patients, and 2) increased awareness among professionals

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

Textbook outcome as a composite outcome measure in non-small-cell lung cancer surgery

OBJECTIVES: Quality assessment is an important element in providing surgical cancer care. The main objective of this study was to develop a new composite measure 'textbook outcome', to evaluate and improve quality of surgical care for patients undergoing a resection for non-small-cell lung cancer (NSCLC).METHODS: All patients undergoing an anatomical resection for NSCLC from 2012 to 2016 registered in the nationwide Dutch Lung Cancer Audit were included in an analysis to assess usefulness of a composite measure as a quality indicator. Based on expert opinion, textbook outcome was defined as having a complete resection (negative resection margins and sufficient lymph node dissection), plus no 30-day or in-hospital mortality, no reintervention in 30days, no readmission to the intensive care unit, no prolonged hospital stay (<14days), no hospital readmission after discharge and no major complications. The percentage of patients with a textbook outcome was calculated per hospital. Between-hospital variation in textbook outcome was analysed using case-mix adjustment models.RESULTS: In total, 5513 patients were included in this study. Textbook outcome was achieved in 26.4% of patients. Insufficient lymph node dissection had the most substantial effect on not realizing textbook outcome. If 'sufficient lymph node dissection' was not included as a criterion, textbook outcome would be 60.7%. Case-mix adjusted textbook outcome proportions per hospitals varied between 13.2% and 37.7%.CONCLUSIONS: In contrast to focusing on a single aspect, the composite measure textbook outcome provides insight into comprehensive performance in NSCLC surgery. It can be used to evaluate both individual hospitals and national performance and provides the opportunity to give benchmarked feedback to thoracic surgeons.Thoracic Surger

The role of perceptions and knowledge of leprosy in the elimination of leprosy

Background With the introduction of new interventions to prevent leprosy, such as post-exposure prophylaxis (PEP) given to contacts of leprosy patients, it is necessary to update our understanding of knowledge and perception of leprosy among the populations where these interventions will be introduced, in order to tailor communication optimally to the current situation. This study is a baseline study of the PEP++ project and aimed to assess the knowledge, attitudes and practices regarding leprosy in Fatehpur, India. Methodology The study used a community-based cross-sectional design with a mixed-methods approach. We assessed knowledge, attitudes, and practices with the KAP measure, and stigma with the Explanatory Model Interview Catalogue community stigma scale (EMICCSS) and the Social Distance Scale (SDS). In addition, semi-structured interviews and focus group discussions were conducted with all participant groups. The quantitative data were analysed using stepwise multivariate regression. The qualitative data were analysed using open, inductive coding and content analysis. Findings A total of 446 participants were included in the study: 100 persons affected by leprosy, 111 close contacts, 185 communit

Leprosy Post-Exposure Prophylaxis (LPEP) programme: Study protocol for evaluating the feasibility and impact on case detection rates of contact tracing and single dose rifampicin

Introduction: The reported number of new leprosy patients has barely changed in recent years. Thus, additional approaches or modifications to the current standard of passive case detection are needed to interrupt leprosy transmission. Large-scale clinical trials with single dose rifampicin (SDR) given as post-exposure prophylaxis (PEP) to contacts of newly diagnosed patients with leprosy have shown a 50-60% reduction of the risk of developing leprosy over the following 2 years. To accelerate the uptake of this evidence and introduction of PEP into national leprosy programmes, data on the effectiveness, impact and feasibility of contact tracing and PE