Measuring leprosy case detection delay and associated factors in Indonesia: a community-based study.

BACKGROUND: Leprosy is a public health burden in Indonesia with a high number of new cases every year and a high proportion of disability among new cases. Case detection delay (CDD) can contribute to ongoing transmission and increased disability chances among leprosy patients. This study aimed to establish the CDD of leprosy and the factors associated with detection delay in Indonesia. METHOD: Community-based study with a cross-sectional design. Data were collected through interviews about sociodemographic and behavioral factors, anticipated stigma, and duration of CDD. Leprosy classification and case detection methods were obtained from health service records. A random sample was taken of 126 leprosy patients registered between 1st October 2020 and 31st March 2022 in the Tegal regency in the Central Java Province. Data were analysed by descriptive and analytical statistics using multiple linear regression. RESULTS: The mean CDD, patient delay, and health system delay were 13.0 months, 9.7 months, and 3.2 months, respectively. Factors associated with longer CDD are younger age (below 35 years), male, found through passive case detection, and not having a family member with leprosy. Factors associated with longer patient delay were being younger (below 35 years), being male, not having a family member with leprosy, and anticipated stigma of leprosy. It was not possible to reliably identify factors associated with health system delay. CONCLUSION: CDD in leprosy should be reduced in Indonesia. The Indonesian National Leprosy Control Program (NLCP) is advised to adopt an integrated intervention programme combining active case detection with targeted health education to reduce CDD and thereby preventing disabilities in people affected by leprosy.

Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries.

BACKGROUND: Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. METHODS/PRINCIPAL FINDINGS: This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4-6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. CONCLUSION: Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.

The life experience of leprosy families in maintaining interaction patterns in the family to support healing in leprosy patients in Indonesian society. A phenomenological qualitative study.

BACKGROUND: Family involvement in overcoming the severity of leprosy is very important in the life of leprosy sufferers in communities who experience the clinical and, psychological, social and behavioral consequences of the disease. However, this need, psychosocial, is felt to be not optimal. This study is to identify how the experiences of family members as caregivers provide assistance to individuals with leprosy in improving healing and maintaining patterns of interaction in the family. METHODS: The design uses qualitative research with in-depth, face-to-face interviews with family members in a semi-structured manner with the hope of obtaining complete data. Using purposive sampling with Participatory Interpretative Phenomenology analysis, there are 12 families with 15 family members consisting of 4 men and 11 women. RESULTS: This study produced a family theme that tried to follow what would happen to individuals with leprosy, with four sub-categories: 1) Using various coping alternatives to recognize the disease, 2) Family members in the shadow of leprosy, 3) Trying to empathize with other family members. sick, 4) Caring for the emotional response of the family and seeking support. CONCLUSIONS: This analysis shows that deficiency in cognitive aspects can be closed by maintaining a lifestyle in the family through efforts to understand, support, establish communication, increase maximum involvement in restoring self-confidence, especially in individuals with leprosy with psychosocial problems in the family. The results of this study can be used as psychosocial support in maintaining communication between family members to support treatment programs and accelerate the recovery of leprosy.

Family vitiligo impact scale: A scale to measure the quality-of-life of family members of patients with vitiligo.

BACKGROUND: Vitiligo places a significant psycho-social burden on caregivers and family members. AIMS: The aim of the study was to develop and preliminarily validate a scale to measure the psychosocial impact of vitiligo on adult family members. METHODS: Themes that emerged from qualitative interviews and a focus group discussion with family members were used to generate items for a preliminary scale, followed by pre-testing and scale development. The new scale was then tested with two comparator scales and a global question. RESULTS: A preliminary scale with 32 items was pilot tested on 30 participants. Following this, the scale was condensed to 16 items in 12 domains that were administered to 159 participants. Scale scores ranged from 0 to 48 with a mean of 19.75 ± 12.41. The scale had excellent internal consistency with Cronbach's alpha coefficient of 0.92 (0.70-0.95) and also showed good test-retest reliability at two weeks (r = 0.946). The scale showed criterion, convergent and known group validity. LIMITATIONS: It was conducted in a large teaching hospital which may have resulted in selection of patients with persistent or progressive disease and more worried family members. Vitiligo is highly stigmatized in our country and the performance of the scale may need to be evaluated in other communities and cultures as well where stigma is less oppressive. CONCLUSION: Family Vitiligo Impact Scale appears to be an easy-to-complete, reliable and valid instrument to measure the psychosocial impact of vitiligo in family members of patients. It may be useful as an outcome measure in both clinical and research settings.

Strengthening individual and family resilience against leprosy-related discrimination: A pilot intervention study.

BACKGROUND: Leprosy and leprosy-related stigma can have a major impact on psychosocial wellbeing of persons affected and their family members. Resilience is a process that incorporates many of the core skills and abilities which may enable people to address stigma and discrimination. The current study aimed to develop and pilot an intervention to strengthen individual and family resilience against leprosy-related discrimination. METHODOLOGY: We used a quasi-experimental, before-after study design with a mixed methods approach. The 10-week family-based intervention was designed to strengthen the resilience of individuals and families by enhancing their protective abilities and capacity to overcome adversity. The study was conducted in two sites, urban areas in Telangana state, and in rural areas in Odisha state, India. Persons affected and their family members were included using purposive sampling. Two questionnaires were used pre-and post-intervention: the Connor-Davidson Resilience Scale (CD-RISC, maximum score 100, with high scores reflecting greater resilience) and the WHOQOL-BREF (maximum score of 130, with higher scores reflecting higher quality of life). In addition, semi-structured interviews were conducted post-intervention. Data were collected at baseline, a few weeks after completion of the intervention, and in the Odisha cohort again at six months after completion. Paired t-tests measured differences pre- and post- intervention. Qualitative data were thematically analysed. FINDINGS: Eighty participants across 20 families were included in the study (23 persons affected and 57 family members). We found a significant increase in CD-RISC scores for persons affected and family members from Odisha state (baseline 46.5, first follow-up 77.0, second follow-up 70.0), this improvement was maintained at six-month follow-up. There was no increase in CD-RISC scores post-intervention among participants from Telangana state. WHOQOL-BREF scores were significantly higher at follow-up for persons affected in both states, and for family members in Odisha state. No families dropped out of the study. In the qualitative feedback, all participants described drawing benefit from the programme. Participants especially appreciated the social dimensions of the intervention. CONCLUSION: This pilot study showed that the 10-week family-based intervention to strengthen resilience among persons affected by leprosy and their family members was feasible, and has the potential to improve resilience and quality of life. A large-scale efficacy trial is necessary to determine the effectiveness and long-term sustainability of the intervention.

Afectación familiar de la enfermedad de Hansen en Costa Rica / Impact of Hansen's disease on relatives of patients in Costa Rica

Resumen Objetivo: El contagio familiar de la enfermedad de Hansen es un hecho bien establecido; aunque la transmisibilidad es baja, los contactos intradomiciliarios de personas enfermas sin tratamiento son un grupo con alto riesgo. El objetivo del estudio fue identificar las características sociodemográficas, culturales y clínicas comunes en grupos familiares, con antecedente de enfermedad de Hansen, como insumo para mejorar el tratamiento de la lepra. Metodología: Se realizó un estudio cualitativo, empleando la técnica de entrevista en profundidad semiestructurada, basándose en una guía de entrevista elaborada, y tomando como referencia factores sociodemográficos, sociales y culturales relacionados con el diagnóstico y tratamiento. Se seleccionaron 25 personas adultas entre 23 y 88 años de edad, de ambos sexos atendidos por el sistema de salud público costarricense. Se utilizaron genogramas para identificar miembros de la familia con antecedentes de la enfermedad. Resultados: El estudio mostró que 12 participantes provenían de 3 grupos familiares; dos grupos con tres generaciones afectadas. Los participantes fueron diagnosticados en edades económicamente activas de vida. Además, realizan ocupaciones manuales, con niveles educativos bajos y de religión cristiana. Al momento de la entrevista conocían el antecedente familiar. La forma de presentación clínica en los tres grupos familiares fue Lepra lepromatosa. Se identificó un caso de lepra conyugal y una participante de 15 años de edad al diagnóstico. Conclusiones: El estudio identificó características sociodemográficas, culturales y clínicas comunes de grupos familiares, que evidenciaron la necesidad de fortalecer la vigilancia de contactos en familias con nuevos casos.

Abstract Aim: Leprosy transmission within family groups is a well-established fact. Although transmissibility is low, household contacts are high-risk population. The aim of the study was to identify common sociodemographic, cultural and clinical characteristics in family groups with history of Hansen's disease as an input to improve treatment. Methodology: A qualitative study was carried out, using in-depth semi-structured interview technique based on leprosy diagnosis and treatment in sociodemographic, social and cultural context. A total of 25 adults between 23 and 88 years of age included both sexes attended by Costa Rican public health care system were selected. Genograms were used to identify family history of disease. Results: The study shows that 12 participants came from 3 family groups; two of them with third affected generation. The participants were diagnosed in economically active periods of life, work in manual occupations, with low level of education and Christians. At the time of the interview, participants knew the family history. The clinical presentation form was lepromatouse leprosy. A conjugal leprosy and a 15-year-old participant at diagnosis were identified. Conclusions: The study identified common sociodemographic, cultural and clinical characteristics of family groups that demonstrate the need to strengthen contact surveillance efforts in families with new cases.

A family-based intervention for prevention and self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis in Ethiopia: A proof of concept study.

A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. This is difficult to sustain without regular encouragement and support of others. Family-based support may be a sustainable and feasible strategy to practice self-management routines. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We used a quasi-experimental pre/post intervention study design with a mixed methods approach. The study population included persons affected by leprosy, lymphatic filariasis and podoconiosis and their family members. All persons affected had visible impairments due to their condition. We collected physical impairment outcomes, data on activity limitations, stigma and family quality of life using the SALSA scale (range 0-80), the SARI stigma scale (range 0-63) and the Beach Centre Family Quality of Life scale (range 0-125) and conducted in-depth interviews and focus group discussions. Quantitative data were analysed using paired t-tests, unequal variances t-tests, linear regression and binary logistic regression. Qualitative data were coded using open, inductive coding and content analysis. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings over the course of several months. A total of 275 (100%) persons affected attended at least one session with a family member, and 215 (78%) attended at least three sessions. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved at follow-up. In addition, family quality of life significantly improved from 67.4 at baseline to 89.9 at follow-up for family members and from 76.9 to 84.1 for persons affected (p<0.001). Stigma levels significantly decreased from 24.0 at baseline to 16.7 at follow-up (p<0.001). Activity levels improved, but not significantly. This proof of concept study showed that the family-based intervention had a positive effect on impairments and self-management of disabilities, family quality of life and stigma. We recommend a large-scale efficacy trial, using a randomised controlled trial and validated measurement tools, to determine its effectiveness and long-term sustainability.

Key sources of strength and resilience for persons receiving services for Hansen's disease (leprosy) in Porto Velho, Brazil: What can we learn for service development?

BACKGROUND: Individuals affected by Hansen's disease (leprosy) often experience stigma and discrimination. Greater psychosocial resilience may enable people to deal with such discrimination. This study aimed to explore sources of strength and resilience for individuals affected by Hansen's disease in Brazil. METHODS: We used a cross-sectional study design with a qualitative approach. Semistructured focus groups were conducted. Analysis comprised thematic categorisation of transcripts. RESULTS: Thirty-one participants were included: 23 individuals affected by Hansen's disease and 8 healthcare providers. We found that while a few individuals affected were provided with formal psychological support in the early phases of their treatment, many noted the importance of providing such support at this time. Most participants described relationships with and social support from family members, friends and with others affected by Hansen's disease as their primary source of resilience. A key context for building resilience was through the peer-level sharing and engagement experienced in self-care and support groups. Participants also emphasised the importance of providing appropriate information about Hansen's disease and the importance of beliefs and spirituality. CONCLUSIONS: Hansen's disease services should seek to build resilience in early treatment through counselling and during treatment and beyond by having people affected getting together. Across both settings supporting family and social relationships, providing accurate information and acknowledging spiritual beliefs are important.

Insights from ancient DNA analysis of Egyptian human mummies: clues to disease and kinship.

The molecular Egyptology field started in the mid-eighties with the first publication on the ancient DNA (aDNA) analysis of an Egyptian mummy. Egypt has been a major interest for historians, archeologists, laymen as well as scientists. The aDNA research on Egyptian biological remains has been fueled by their abundance and relatively well-preserved states through artificial mummification and by the advanced analytical techniques. Early doubts of aDNA integrity within the Egyptian mummies and data authenticity were later abated with studies proving successfully authenticated aDNA retrieval. The current review tries to recapitulate the published studies presenting paleogenomic evidence of disease diagnosis and kinship establishment for the Egyptian human remains. Regarding disease diagnosis, the prevailing literature was on paleogenomic evidence of infectious diseases in the human remains. A series of reports presented evidence for the presence of tuberculosis and/or malaria. In addition, there were solitary reports of the presence of leprosy, diphtheria, bacteremia, toxoplasmosis, schistosomiasis and leishmaniasis. On the contrary, paleogenomic evidence of the presence of rare diseases was quite scarce and mentioned only in two articles. On the other hand, kinship analysis of Egyptian human remains, including that of Tutankhamen, was done using both mitochondrial DNA sequences and nuclear DNA markers, to establish family relationships in four studies. It is clear that the field of molecular Egyptology is still a largely unexplored territory. Nevertheless, the paleogenomic investigation of Egyptian remains could make significant contributions to biomedical sciences (e.g. elucidation of coevolution of human host-microbe interrelationship) as well as to evidence-based archeology.

Fatores associados à hanseníase em agentes comunitários de saúde da região amazônica / Factores asociados a la lepra en agentes comunitarios de salud de la región amazónica / Factors associated with leprosy in community health agents in the amazon region

RESUMO Objetivo: investigar os fatores associados àocorrência/incidência de hanseníase em Agentes Comunitários de Saúde (ACS), em Palmas, Tocantins. Métodos: estudo transversal, realizado mediante a aplicação de questionário para 301 ACS entre os anos de 2017 e 2018, em Palmas, Tocantins. Realizou-se análise bivariada com a aplicação do teste de qui-quadrado de Pearson e o cálculo das razões de prevalência (RP) com intervalos de 95% de confiança (IC 95%). Resultados: a idade média dos ACS foi de 47 anos, com mínima de 20 e máxima de 67 anos. As razões de chance significativamente associadas foram idade ≥ 36 anos (RC:3,65 IC:1,58-8,44), mulheres (RC:2,58 IC:1,16-5,75), UBS localizada fora do plano diretor (RC:2,22 IC:1,37-3,59), renda familiar inferior a 2 salários mínimos (RC:3,50 IC:2,14-5,74), entre 10 e 18 anos de tempo de serviço como ACS (RC:3,04 IC:1,46-6,32), ter capacitação para hanseníase (RC:2,41 IC:1,24-4,69), maior número de casos de hanseníase acompanhados no território (RC:2,59 IC:1,36-4,94) e naturalidade de outro estado(RC:1,67 IC:1,05-2,67). Ter história familiar foi o único fator associado independente (OR:1,83 IC:1,10-3,02). Conclusão: a hanseníase em ACS foi associada a desfavoráveis condições sociodemográficas, maior experiência com o assunto, tendo como fator isolado ter um familiar doente, de menor renda e que acompanhou mais casos.

RESUMEN Objetivo: investigar los factores asociados a la incidencia de lepra en Agentes Comunitarios de Salud (ACS), en Palmas, Tocantins-Brasil. Métodos: estudio transversal, realizado mediante la aplicación de cuestionario para 301 ACS entre los años 2017 y 2018, en Palmas, Tocantins-Brasil. Se realizó análisis bivariado con la aplicación delaprueba de chi-cuadrado de Pearson y el cálculo de la razón de prevalencia (RP) con intervalos de 95% de confianza (IC 95%). Resultados: el promedio de edad de los ACS fue de 47 años, con mínima de 20 y máxima de 67 años. Las razones de probabilidad significativamente asociadas fueron edad ≥36 años (RC:3,65 IC:1,58-8,44), mujeres (RC:2,58 IC:1,16-5,75), UBS ubicada fuera del plan director (RC:2,22 IC:1,37-3,59), ingresos familiares por debajo de 2 sueldos mínimos (RC:3,50 IC:2,14-5,74), entre 10 y 18 años de servicio como ACS (RC:3,04 IC:1,46-6,32), tener capacitación para lepra (RC:2,41 IC:1,24-4,69), mayor número de casos de lepra acompañados en el territorio (RC:2,59 IC:1,36-4,94) y naturalidad de otro estado (RC:1,67 IC:1,05-2,67). Tener historia familiar fue el único factor asociado independiente (OR:1,83 IC:1,10-3,02). Conclusión: la lepra en ACS fue asociada a condiciones adversas sociodemográficas, mayor experiencia con el asunto, teniendo como factor aislado tener un familiar enfermo, de menor renta y que acompañó más casos.

ABSTRACT Objective: to investigate the factors associated with the occurrence/incidence of leprosy in Community Health Agents (CHA) in Palmas, Tocantins. Methods: a cross-sectional study was conducted by applying a questionnaire to 301 CHAs between 2017 and 2018, in Palmas, Tocantins. Bivariate analysis was performed using Pearson's chi-square test and calculation of prevalence ratios (PR) with 95% confidence intervals (95% CI). Results: the average age of the CHAs was 47 years old, with a minimum of 20 and a maximum of 67 years old. Odds ratios significantly associated were age ≥ 36 years old (OR: 3.65 CI: 1.58-8.44), women (OR: 2.58 CI: 1.16-5.75), UBS located outside the hospital. master plan (OR: 2.22 CI: 1.37-3.59), family income less than 2 minimum wages (OR: 3.50 CI: 2.14-5.74), between 10 and 18 years of time served as CHA (OR: 3.04 CI: 1.46-6.32), have training for leprosy (OR: 2.41 CI: 1.24-4.69), a higher number of leprosy cases followed up in the territory (OR:2.59 CI:1.36-4.94) and from another state (OR:1.67 CI:1.05-2.67). Having a family history was the only independent associated factor (OR:1.83 CI:1.10-3.02). Conclusion: leprosy in CHA was associated with unfavorable sociodemographic conditions, greater experience with the topic, with the isolated factor having a sick family member, with lower income and who followed more cases.

An exploration of family quality of life in persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities and their family members in Ethiopia.

BACKGROUND: Leprosy, podoconiosis and lymphatic filariasis (LF) may adversely affect the social, economic and psychological well-being of persons affected and their families. The objectives of this study were to assess and compare family quality of life of persons affected and their family members, explore the relationship between family quality of life and perceived stigma and activity limitations and explore what factors influence family quality of life. METHODS: A cross-sectional quantitative study was conducted in the Awi zone in Ethiopia. Persons affected and their family members were selected using purposive sampling. Three questionnaires were used: the Beach Center Family Quality of Life (FQOL) scale (range 25-125, with higher scores denoting higher family quality of life), the SARI Stigma Scale (range 0-63, with higher scores denoting higher levels of stigma) and the Screening of Activity Limitation and Safety Awareness (SALSA) scale (range 0-80, with higher scores denoting more activity limitations). Data analysis consisted of simple descriptive analysis and regression analysis. RESULTS: A total of 95 persons affected and 117 family members were included. The overall mean of the family quality of life score was 71.7. Persons affected had significantly higher mean family quality of life scores than family members on all domains. Female gender, a smaller family size and occupation were associated with lower family quality of life. We found a mean SARI Stigma score of 22.3 and a mean SALSA score of 37.6. There was no association between the FQOL and SARI scores or between the FQOL and SALSA scores. CONCLUSIONS: Family quality of life is an important area to address because neglected tropical diseases often affect the whole family. It is therefore important in order to provide appropriate support for persons affected and their family members. Efforts to improve the quality of life of families in which a family member is affected by leprosy, podoconiosis or LF should give priority to women and families with a smaller family size.

The role of an active surveillance strategy of targeting household and neighborhood contacts related to leprosy cases released from treatment in a low-endemic area of China.

OBJECTIVE: Early diagnosis remains the primary goal for leprosy management programs. This study aims to determine whether active surveillance of patients with leprosy and their contact individuals increased identification of latent leprosy cases in the low-endemic areas. METHODS: This cross-sectional survey was carried out between October 2014 and August 2016 in 21 counties throughout Shandong Province. The survey was conducted among patients with leprosy released from treatment (RFT) and their contacts from both household and neighbors. RESULTS: A total of 2,210 RFT patients and 9,742 contacts comprising 7877 household contacts (HHCs), including 5,844 genetic related family members (GRFMs) and 2033 non-genetic related family members and 1,865 contacts living in neighboring houses (neighbor contacts, NCs), were recruited. Among identified individuals, one relapsed and 13 were newly diagnosed, giving a detection rate of 0.12%, corresponding to 120 times the passive case detection rate. Detection rates were similar for HHCs and NCs (0.114% vs. 0.214%, P = 0.287). Analysis of the family history of leprosy patients revealed clustering of newly diagnosed cases and association with residential coordinates of previously-diagnosed multibacillary leprosy cases. CONCLUSION: Active case-finding programs are feasible and contributes to early case detection by tracking HHCs and NCs in low-endemic areas.

Real-time PCR-based quantitation of viable Mycobacterium leprae strain from clinical samples and environmental sources and its genotype in multi-case leprosy families of India.

The potential role of environmental M. leprae in the transmission of leprosy remains unknown. We investigated role of environment as a possible source of viable M. leprae responsible for transmission of leprosy. The samples were collected from 10 multi-case leprosy families comprising, slit skin smear (SSS) from 9 multibacillary (MB), 16 paucibacillary cases (PB), 22 household contacts, and 38 environmental soil samples. The quantum of viable M. leprae was estimated by qRT-PCR using 16S rRNA gene from soil and SSS. Genotypes of M. leprae were determined by gene sequencing. We could observe presence of viable M. leprae in 11 (44%) leprosy cases (M. leprae 16S rRNA gene copies range from 1.78 × 102 to 8.782 × 109) and 4 (18%) household contacts (M. leprae 16S rRNA gene copies range from 2.54 × 103 and 7.47 × 104). Remarkably, presence of viable M. leprae was also noted in 10 (53%) soil samples where in M. leprae 16S rRNA gene copies ranged from 4.36 × 102 to 7.68 × 102. M leprae subtype 1D was noted in most of the leprosy cases their household contacts and in the surrounding soil samples indicating source of infection in household contacts could be from environment or patients. M. leprae 16S rRNA copies were approximately similar in both PB cases and soil samples along with presence of SNP type 1 subtype 1D in both samples indicating source of M. leprae from patients to contacts was either from patients or environment or both.

The impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life: A qualitative study in Northwest Ethiopia.

BACKGROUND: Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looks at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life. METHODOLOGY: The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted. Participants, persons affected and their family members, were selected by purposive sampling. Data were collected between August and November 2017 in Awi zone, Northwest Ethiopia and analysed by three independent researchers using open, inductive coding and content analysis. RESULTS: A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. We found that participation restrictions, reduced productivity and marginalisation were common. In addition, discrimination in the communities occurred often, often extending to family members of persons affected. Divorce and difficulties in finding a spouse were common for persons affected and their family members. Many persons affected reported mental health problems. While most people got social and physical support from their families, there were a few exceptions. In particular, persons with younger children seemed to lack social support. Having to provide for their affected family member sometimes caused stress, school dropouts and an additional workload. Financial problems and loss of livelihood were reported by almost all participants. CONCLUSION: This study revealed that leprosy, lymphatic filariasis and podoconiosis have an effect on several dimensions of family quality of life. Many problems reported related to stigma and poverty.

Immunological biomarkers of subclinical infection in household contacts of leprosy patients.

Hansen's disease (or leprosy) still persists as a serious public health issue. Its diagnosis is based primarily on the detection of clinical signs that are characteristic of the disease. Studies have pointed to the selection of a set of serological and cellular biomarkers of subclinical infection that result in an efficient diagnosis. The aim of this study was compare index cases and their household contacts to identify differentially expressed biomarkers of immune response in leprosy that could provide reliable evidence of subclinical infection in household contacts. The study population consisted of index cases with multibacillary form (IC, n = 13) and their household contacts (HC, n = 14). Serum cytokines and chemokines were quantified using the cytometric beads array (CBA) system. The humoral response was assessed by ELISA test. Flow cytometry was used to characterize the cellular immune response. Monocyte and CD4 + T lymphocytes frequency was significantly higher in IC. Both CD4+ and CD8 + T lymphocytes had a reduced CD25 expression in HC. The immunoglobulin (Ig)M profile anti- NDO-HSA, LID-1, and NDOLID antigens was significantly higher in IC. This study points to the monocyte and CD4+ lymphocyte frequency, as well as specific IgM profile, as predictors of subclinical infection in the household contacts.

Multiple strain infection of Mycobacterium leprae in a family having 4 patients: A study employing short tandem repeats.

BACKGROUND: Leprosy is a slow, chronic disorder caused by Mycobacterium leprae. India has achieved elimination of leprosy in December 2005 but new cases are being detected and continue to occur in some endemic pockets. The possible ways of transmission of leprosy is not fully understood and is believed that leprosy is transmitted from person to person in long term contact. Studying the transmission dynamics is further complicated by inability to grow M. leprae in culture medium and lack of animal models. More than one family members were found to be affected by leprosy in some highly endemic pockets. This study reported the transmission pattern of leprosy in a family having 4 patients. METHODOLOGY/PRINCIPAL FINDINGS: We investigated the transmission of leprosy in a single family having 4 patients using microsatellite typing. DNA was isolated from slit skin smear samples taken from the patients and the isolated DNA were amplified using microsatellite loci TA11CA3. The amplified products were sequenced using Sanger's sequencing methods and the copy number variation in the microsatellite loci between strains were elucidated by multiple sequence alignment. The result showed that all the 4 members of the family acquired infection from 3 different strains of M. leprae from 3 different sources. The elder and middle daughters were infected by same types of strains having the repeat unit TA13CA3 and could have acquired the infection from social contacts of leprosy cases while the father and younger daughter were infected by strains with the repeat unit TA12CA3 and TA11CA3 and could have acquired infection from social contacts. CONCLUSIONS/SIGNIFICANCE: The study suggested that three family members viz, elder daughter, father and younger daughter could be infected by M. leprae from 3 different sources and the history of the disease and genetic analysis showed that the middle daughter acquired infection from her elder sister in due course of contact. This study implies that the transmission of leprosy not only occurred amongst the house hold members but also has been transmitted from social and neighborhood contacts in long term association with the them.

Gestão do cuidado à hanseníase: estudo de caso em um serviço de referência na 5ª regional de saúde, Paraná, Brasil / Management of leprosy care: a case study in a reference service in the 5th regional health, Paraná, Brazil

Resumo: Este estudo teve como objetivo analisar a assistência prestada às pessoas afetadas pela hanseníase por meio das múltiplas dimensões da Gestão do Cuidado. Trata-se de um estudo de caso único, exploratório e com métodos mistos. Foi desenvolvido em um serviço de referência em Guarapuava, Paraná, por meio de duas etapas concomitantes. Na etapa qualitativa, os 19 participantes foram organizados em três grupos: oito profissionais de saúde, incluindo a coordenação do programa na 5ª Regional de Saúde, sete pessoas com hanseníase e quatro familiares. Foram realizadas entrevistas individuais no período de março a junho de 2017. Utilizou-se a análise de conteúdo e o software WebQDA para apoio à codificação do material. A partir das categorias de análise, isto é, das seis dimensões da Gestão Cuidado à Hanseníase, os dados qualitativos foram codificados por 45 Códigos Árvore, ramificados em 15 Códigos e 30 Sub-Códigos. Na etapa quantitativa, foram incluídos os casos notificados em Guarapuava, e na 5ª Regional de Saúde, no período de 2007 a 2016, obtidos a partir da base de dados de domínio público e organizados por meio de estatística descritiva. Para análise foi realizada triangulação dos dados pelo uso de múltiplas fontes; da teoria, utilizando a Gestão do Cuidado como referencial metodológico ancorado no Materialismo Histórico Dialético como referencial teórico filosófico; e dos métodos, por meio do diálogo entre os dados qualitativos e quantitativos. Constatou-se que a incidência da hanseníase indica que a disseminação da doença continua presente na região, apesar da baixa endemicidade. Verificou-se predomínio em homens, com baixa escolaridade, desempregado ou em emprego informal e com baixa renda, evidenciando a associação da hanseníase com as desigualdades sociais. A alta proporção de cura e ausência de abandono do tratamento remetem à qualidade da atenção e acompanhamento dos casos confirmados no serviço de referência. Entretanto, as lacunas na efetividade da detecção precoce da hanseníase foram evidenciadas pelo predomínio dos casos multibacilares e pela presença de grau dois de incapacidade. Foram identificados como processos que contribuem para o diagnóstico tardio: o estigma como um fenômeno profunda e historicamente enraizado nas sociedades; a falta de conhecimento sobre a doença tanto dos indivíduos e familiares quanto dos profissionais de saúde; o longo itinerário até a confirmação do diagnóstico; além da sobrecarga de trabalho e do despreparo dos profissionais de saúde da Atenção Básica. Em relação aos processos que potencializam a adesão ao tratamento se destacou o apoio familiar e a satisfação dos usuários com atendimento prestado no serviço de referência, com ênfase ao trabalho em equipe e o vínculo. Concluiu-se que a tese defendida evidenciou as contradições nas múltiplas dimensões da gestão do cuidado e permitiu compreender que o desafio para o enfrentamento da hanseníase não se encontra apenas no âmbito biológico, mas na sua determinação social. Dessa forma, como condição de superação da realidade encontrada reforça-se a necessidade de implementação de políticas de saúde não apenas para que seja alcançada a meta de eliminação da hanseníase, mas o seu efetivo controle por meio de políticas públicas voltadas para os grupos vulneráveis.

Abstract: This study aimed to analyze the care provided to people affected by leprosy through the multiple dimensions of Care Management. This is a unique exploratory case study with mixed methods. It was developed in a reference service in Guarapuava, Paraná, through two concomitant stages. In the qualitative stage, the 19 participants were organized into three groups: eight health professionals, including program coordination in the 5th Regional Health, seven people with leprosy and four family members. Individual interviews were carried out from March to June 2017.Content analysis and WebQDA software were used to support the coding of the material. From the categories of analysis, that is, of the six dimensions of Management Care for Leprosy, the qualitative data were coded by 45 Tree Codes, branched into 15 Codes and 30 Sub-Codes. In the quantitative stage, the cases reported in Guarapuava and in the 5th Regional of Health, from 2007 to 2016, were obtained from the public domain database and organized through descriptive statistics. For analysis, triangulation of the data through the use of multiple sources was performed; of theory, using Care Management as a methodological reference anchored in the Dialectical Historical Materialism as a philosophical theoretical reference; and methods, through the dialogue between qualitative and quantitative data. It was found that the incidence of leprosy indicates that the spread of the disease remains present in the region, despite the low endemicity. There was a predominance of men with low schooling, unemployed or informal employment and with low income, evidencing the association of leprosy with social inequalities. The high proportion of cure and absence of treatment abandonment refer to quality of care and follow-up of confirmed cases in the referral service. However, gaps in the effectiveness of early detection of leprosy were evidenced by the predominance of multibacillary cases and the presence of grade two disability.They were identified as processes that contribute to the late diagnosis: stigma as a profound phenomenon and historically rooted in societies; the lack of knowledge about the disease of both individuals and families as well as health professionals; the long journey until the confirmation of the diagnosis; besides the overload of work and the lack of preparation of the health professionals of Primary Care. Regarding the processes that enhance adherence to treatment, the family support and the satisfaction of the users with care provided in the reference service, with emphasis on teamwork and the link, were highlighted. It was concluded that the thesis defended evidenced the contradictions in the multiple dimensions of care management and allowed to understand that the challenge for coping with leprosy is not only in the biological scope, but in its social determination. Thus, as a condition for overcoming the reality found, the need to implement health policies is reinforced, not only to achieve the goal of eliminating leprosy, but its effective control through public policies directed at vulnerable groups.