Individual, socioeconomic and healthcare access factors influencing the delays in leprosy presentation, diagnosis and treatment: a qualitative study.

BACKGROUND: This study investigated the factors influencing the presentation, diagnosis and treatment of leprosy in primary healthcare. METHODS: Qualitative research was conducted on patients undergoing treatment in a priority hyperendemic region for leprosy control in northeastern Brazil. Interviews were conducted between September and December 2020 at primary healthcare centers. Data were analysed based on the basic interpretive qualitative structure according to Andersen and Newman's model of healthcare utilisation. RESULTS: Knowledge of leprosy symptoms influenced patients' search for a diagnosis. Unfavorable socioeconomic conditions experienced by patients made diagnosis and treatment difficult. Incorrect evaluations by health professionals caused difficulties and delays in obtaining a diagnosis of leprosy. Perceptions about the disease, such as non-acceptance of the disease and the adverse effects of the medications, affected treatment seeking and treatment continuity. CONCLUSIONS: Patients with leprosy faced delays and healthcare access barriers related to knowledge of the disease, socioeconomic conditions and the structure of healthcare services, which must be considered when creating care plans, surveillance and control actions against leprosy. Appropriate interventions are necessary to reduce delays and better control the disease.

Health care resource utilization and costs associated with atrial fibrillation and rural-urban disparities.

BACKGROUND: Atrial fibrillation (AF) imposes substantial health care and economic burden on health care systems and patients. Previous studies failed to examine health care resource utilization (HCRU) and costs among patients with incident AF and potential disparity with regard to geographic location. OBJECTIVES: To examine HCRU and costs among patients with incident AF compared with patients without AF and examine whether a geographic disparity exists. METHODS: This was a retrospective cohort study. We selected patients with AF and patients without AF from IBM/Watson MarketScan Research Databases 2014-2019. HCRU and costs were collected 12 months following an AF index date. We used 2-part models with bootstrapping to obtain the marginal estimates and CIs. Rural status was identified based on Metropolitan Statistical Area. We adjusted for age, sex, plan type, US region, and comorbidities. RESULTS: Among 156,732 patients with AF and 3,398,490 patients without AF, patients with AF had 9.04 (95% CI = 8.96-9.12) more outpatient visits, 0.82 (95% CI = 0.81-0.83) more emergency department (ED) visits, 0.33 (95% CI = 0.33-0.34) more inpatient admission, and $15,095 (95% CI = 14,871-15,324) higher total costs, compared with patients without AF. Among patients with AF, rural patients had 1.99 fewer (95% CI = -2.26 to -1.71) outpatient visits and 0.05 (95% CI = 0.02-0.08) more ED visits than urban patients. Overall, rural patients with AF had decreased total costs compared with urban patients (mean = $751; 95% CI = -1,227 to -228). CONCLUSIONS: Incident AF was associated with substantial burden of health care resources and an economic burden, and the burden was not equally distributed across patients in urban vs rural settings. DISCLOSURES: Dr Hansen reports grants from the National Science Foundation during the conduct of the study.

Individual and community factors determining delayed leprosy case detection: A systematic review.

BACKGROUND: The number of new leprosy cases is declining globally, but the disability caused by leprosy remains an important disease burden. The chance of disability is increased by delayed case detection. This review focusses on the individual and community determinants of delayed leprosy case detection. METHODS: This study was conducted according to the PRISMA guidelines (Preferred Reporting Items for Systematic Reviews and Meta-Analysis). The study protocol is registered in PROSPERO (code: CRD42020189274). To identify determinants of delayed detection, data was collected from five electronic databases: Embase.com, Medline All Ovid, Web of Science, Cochrane CENTRAL, and the WHO Global Health Library. RESULTS: We included 27 papers from 4315 records assessed. They originated in twelve countries, had been published between January 1, 2000, and January 31, 2021, and described the factors related to delayed leprosy case detection, the duration of the delayed case, and the percentage of Grade 2 Disability (G2D). The median delay in detection ranged from 12 to 36 months, the mean delay ranged from 11.5 to 64.1 months, and the percentage of G2D ranged from 5.6 to 43.2%. Health-service-seeking behavior was the most common factor associated with delayed detection. The most common individual factors were older age, being male, having a lower disease-symptom perception, having multibacillary leprosy, and lack of knowledge. The most common socioeconomic factors were living in a rural area, performing agricultural labor, and being unemployed. Stigma was the most common social and community factor. CONCLUSIONS: Delayed leprosy case detection is clearly correlated with increased disability and should therefore be a priority of leprosy programs. Interventions should focus on determinants of delayed case detection such as health-service-seeking behavior, and should consider relevant individual, socioeconomic, and community factors, including stigmatization. Further study is required of the health service-related factors contributing to delay.

Investigating barriers and challenges to the integrated management of neglected tropical skin diseases in an endemic setting in Nigeria.

BACKGROUND: There is a dearth of experience in and evidence for cost-effective integrated community-based management of skin neglected tropical diseases (NTDs). The objective of this study was to assess the knowledge, attitude and care-seeking practices including self-care with a view to introducing appropriate community-based interventions for skin NTDs in an endemic setting in Southern Nigeria. METHODS/PRINCIPAL FINDINGS: This exploratory study adopted a mixed-methods design consisting of cross-sectional surveys of community members and health workers using interviewer-administered questionnaires; and focus group discussions (FGDs) with community members, health care workers and patients with NTDs in Anambra State, Nigeria. The survey was completed by 353 community members (61.8% female) and 15 health care workers (100.0% female). A total of 52 individuals participated in six FGDs. Of the community members, 236 (66.9%) had heard or seen a case of leprosy; 324 (91.8%) and 131 (37.5%) had heard or seen a case of Buruli ulcer and lymphatic filariasis, respectively. Again, 213 (60.3%) of the respondents reported that the diseases were caused by witchcraft or curse. As regards prevention, 241 (68.3%) suggested avoiding handshake with affected persons. Up to 223 (63.2%) of respondents strongly agreed to the seriousness of skin NTDs in their community. Meanwhile, 272 (77.1%) of the respondents believed that the transmission of these skin NTDs can be prevented. Furthermore, 324 (91.7%) desired active community engagement for control of skin NTDs. Regarding community care seeking practices, 197 (55.8%) would first visit the health centre/hospital, followed by 91 (25.8%) traditional healer/herbalist and 35 (9.9%) pharmacy/patent medicine vendor if they develop a skin NTD. Overall, 332 (94.1%) of respondents expressed interest in being taught self-care practices for skin NTDs. Out of 15 healthcare workers, 13 (86.7%) were able to correctly diagnose two of these skin NTDs and 10 (66.7%) would encourage patients to practice self-care. Prominent themes in the FGDs were belief in witchcraft and herbal remedies; as well as the occurrence of physical, social and economic distress. CONCLUSIONS: Our study helped quantify the information gaps that need to be addressed in order to create demand for integrated skin NTDs services in an endemic setting in Nigeria. Individual, structural and socioeconomic challenges to access and delivery of services were identified. Community and health care workers' empowerment and engagement through outreach and regular training, respectively may alleviate these challenges.

Aceitabilidade da quimioprofilaxia em área endêmica para a hanseníase: projeto PEP-Hans Brasil / Acceptability of chemoprophylaxis in an endemic area for leprosy: the PEP-Hans Brazil Project / Aceptabilidad de la quimioprofilaxis en un área endémica de hanseniasis: Proyecto PEP-Hans Brasil

Resumo: O objetivo deste artigo foi analisar a aceitabilidade da quimioprofilaxia com rifampicina em dose única (PEP) entre os contatos, casos índices de hanseníase e profissionais da saúde e fatores relacionados que possam influenciar na adesão. Realizou-se um estudo qualitativo de análise de conteúdo após aplicação de entrevistas semiestruturadas segundo protocolo proposto no programa LPEP (2016), realizado em Alta Floresta, Mato Grosso, Brasil, em julho de 2016. Participaram do estudo indivíduos notificados com hanseníase, contatos e profissionais da saúde. Utilizou-se o software QRS NVivo versão 10. Foram contatados 80 indivíduos, sendo 54 (67%) contatos, 11 (14%) casos índices e 15 (19%) profissionais de saúde. Dentre os contatos, 94% (51/54) tomaram PEP. Foram identificadas 3 categorias quanto à PEP: compreensão, aceitação e expectativa da intervenção. A compreensão se mostrou relacionada ao cuidado da equipe de saúde. Aceitar ou não a medicação revelou-se relacionada ao medo, confiança e proteção, operacionalidade da estratégia, autoestima e insegurança quanto à intervenção. A expectativa da intervenção relacionou-se ao bem-estar, prevenção da doença e de sequelas, diminuição de gastos públicos e ampliação do acesso. Houve reconhecimento da relevância da estratégia PEP pela possibilidade de interrupção da cadeia de transmissão, diminuição de casos novos e melhora na qualidade de vida. A insegurança em tomar a medicação e de a doença se manifestar influenciaram negativamente à aceitação da PEP; por outro lado, as informações prévias sobre a estratégia PEP contribuíram para o fortalecimento da confiança nos profissionais de saúde e para a aceitabilidade da medicação(AU).

Abstract: The aim was to analyze the acceptability of chemoprophylaxis with single-dose rifampicin (PEP) in contacts, index leprosy cases, and health professionals and related factors that can influence adherence. A qualitative content analysis study was performed after application of semi-structured interviews according to the protocol proposed in the LPEP program (2016) drafted at Alta Floresta, Mato Grosso State, Brazil, in July 2016. Study participants included individuals with leprosy, contacts, and health professionals. The QRS NVivo software version 10 was used. A total of 80 individuals were contacted, including 54 (67%) contacts, 11 (14%) index cases, and 15 (19%) health professionals. 94% of the contacts (51/54) took PEP. Three PEP categories were identified: understanding, acceptance, and expectation towards the intervention. Understanding proved to be related to care by the health team. Acceptance (or lack thereof) of the medication was related to fear, trust, and protection, the strategy's operability, self-esteem, and insecurity regarding the intervention. Expectation towards the intervention was related to wellbeing, prevention of the disease, sequelae, decrease in public expenditures, and expanded access. Participants acknowledged the relevance of the PEP strategy based on the possibility of interrupting the transmission chain, reduction in new cases, and improved quality of life. Insecurity in taking the medication and the possibility of the disease manifesting itself had a negative influence on acceptance of PEP, while prior information on the PEP strategy helped strengthen trust in the health professionals and the medication's acceptance(AU).

Resumen: El objetivo fue analizar la aceptabilidad de la quimioprofilaxis con rifampicina en dosis única (PEP) entre los contactos, casos índices de hanseniasis y profesionales de salud, así como los factores relacionados que puedan influenciar en la adhesión al tratamiento. Se realizó un estudio cualitativo de análisis de contenido, tras la realización de entrevistas semiestructuradas, según el protocolo propuesto en el programa LPEP (2016), realizado en Alta Floresta, Mato Grosso, Brasil, en julio de 2016. Participaron en el estudio individuos diagnosticados con hanseniasis, contactos y profesionales de la salud. Se utilizó el software QRS NVivo versión 10. Se contactó con 80 individuos, siendo 54 (67%) contactos, 11 (14%) casos índices y 15 (19%) profesionales de salud. Entre los contactos 94% (51/54) tomaron PEP. Se identificaron 3 categorías respecto a la PEP: comprensión, aceptación y expectativa de intervención. La comprensión estuvo relacionada con el cuidado del equipo de salud. El aceptar o no la medicación estuvo relacionado con el miedo, confianza y protección, operatividad de la estrategia, autoestima e inseguridad de la intervención. La expectativa de la intervención estuvo relacionada con el bienestar, prevención de la enfermedad, así como secuelas, disminución de gasto público y ampliación del acceso. Existió un reconocimiento de la relevancia de la estrategia PEP por la posibilidad de interrupción de la cadena de transmisión, disminución de casos nuevos y mejora en la calidad de vida. La inseguridad en tomar la medicación y de que la enfermedad se manifestara influenciaron negativamente en la aceptación de la PEP, por otro lado, la información previa sobre la estrategia PEP contribuyó al fortalecimiento de la confianza en los profesionales de salud y a la aceptabilidad de la medicación(AU).

Risk of disability among adult leprosy cases and determinants of delay in diagnosis in five states of India: A case-control study.

INTRODUCTION: A high proportion of grade 2 disability (visible deformity) is indicative of delay in detection of leprosy and leprosy is one of the major causes of preventable disability. We conducted this study to determine the risk factors associated with disability (G2D and G1D) among adult new leprosy cases and to measure their strength of association. METHODS: A multi-centric case-control study was undertaken in five states of India i.e. Andhra Pradesh, Delhi, Gujarat, Maharashtra and West Bengal). Among new adult patients, cases were defined as those with disability (G2D and G1D) at the time of diagnosis and controls were defined as those without any disability (G0D). Delays were quantified based on patient recall across a timeline. Patient delay defined as the time period between first noticed symptom by the patient and the first visit to any health care provider (HCP); HCP delay defined as the time period between patient's first visit to any HCP and the confirmation of diagnosis of leprosy; and total delay defined as the sum of both patient and HCP delays. RESULTS: A total of 1400 new leprosy patients (700 G2D/G1D and 700 G0D) across five states were interviewed. Among G2D/G1D, the median patient delay was 8 months compared with 4 months among G0D. The median HCP delay was 2 months for G2D/G1D and 1 month for G0D. The median total delay was 14 months for G2D/G1D and 6.2 months for G0D; observed median difference between groups was statistically significant (p<0.001). When patient delay was more than 3 months, odds of G2D/G1D at diagnosis were 1.6 times higher compared to when patient delay was less than 3 months. When the HCP delay was more than one month, the odds of G2D/G1D were 1.4 times higher compared to when the HCP delay was less than one month. When the patient had multi-bacillary type leprosy the odds of G2D/G1D at the time of diagnosis was nine times higher compared to pauci-bacillary type leprosy. CONCLUSION: Patient delay is the major reason for risk of disability (G2D/G1D) among adult leprosy patients. A patient delay of more than 3 months from the notice of first symptom is a significant indicator for the disabilities among adult leprosy patients. Early case detection campaigns like active surveys in endemic spots should be done periodically as this can reduce delays and promote early diagnosis. Additionally, the program should lay greater emphasis on raising community awareness regarding the disease. Also, health care provider delay of more than 1 month have been significant risk factors for disability among adult leprosy cases. Hence, periodical capacitation of all HCPs including private practitioners would significantly contribute to reduce diagnostic delay and promote timely referral and early detection.

Health Care Costs Associated with Addition, Titration, and Switching Antihypertensive Medications After First-Line Treatment: Results from a Commercially Insured Sample.

BACKGROUND: Treatment modifications are necessary for addressing issues related to efficacy and tolerance of first-line monotherapy, but they increase the economic burden on patients and their health plans. Understanding the differences in costs between alternative treatment modification strategies, if any, can serve as a guideline for clinical decision making and for designing cost-containment strategies. OBJECTIVE: To compare the health care utilization costs between (a) addition (i.e., use of free-pill combinations [FPCs] or fixed-dose combinations [FDCs]) and uptitration as alternatives for addressing efficacy issues and (b) switching and downtitration as alternatives for addressing tolerance issues with first-line antihypertensive monotherapy. METHODS: This is a retrospective cohort study that used the 2008-2012 BlueCross BlueShield of Texas claims database. Patients who had a treatment modification within 12 months of initiating antihypertensive monotherapy were identified. All-cause and disease-related health care utilization costs and drug costs were estimated from the BlueCross BlueShield health plan's perspective over a 12-month period, starting from the date of treatment modification. Propensity score-adjusted generalized linear models were used to compare costs between alternative treatment modification strategies. RESULTS: We identified 5,998 patients who met study criteria and had a modification of treatment: FPC (n = 1,395), FDC (n = 1,207), uptitration (n = 1,659), switching (n = 1,282), and downtitration (n = 455). All-cause and disease-related health services utilization costs were estimated for 12 months following treatment modification. Mean annual drug utilization costs were highest for the FDC strategy. All-cause inpatient and outpatient services utilization costs were significantly different between strategies used for addressing issues of tolerance and efficacy, respectively. Disease-related inpatient services utilization costs were lower for the FDC strategy compared with the uptitration strategy. However, disease-related inpatient services utilization costs were not significantly different for the downtitration strategy compared with the switch strategy. CONCLUSIONS: Health care costs following treatment modifications vary by type of strategy. The high costs of FDCs may be offset by the reduction of inpatient services utilization costs. Careful consideration should be given to the differences in costs between alternative strategies. DISCLOSURES: No outside funding supported this study. The dataset used in this study was created for dissertational research on the patterns and outcomes of treatment modification in hypertensive patients. Data and database support were provided by University of Texas School of Public Health/BlueCross BlueShield of Texas research program in payment systems and policy. Sonawane Deshmukh was an employee of Anthem BlueCross BlueShield from August 2015 to August 2016. Hansen has received consulting funds from Daichii Sankyo and has provided expert testimony for Allergan and Boehringer Ingelheim. All other authors have no known conflicts of interest. Study concept and design were contributed by Sonawane Deshmukh, Garza, Wright, and Hansen. Sonawane Deshmukh and Ganduglia Cazaban collected the data, and data interpretation was performed by Sonawane Deshmukh, Qian, Wright, and Zeng. The manuscript was written primarily by Sonawane Deshmukh, along with Qian and Garza, and revised by Sonawane Deshmukh, Qian, Ganduglia Cazaban, and Hansen.

Factors Contributing to the Delay in Diagnosis and Continued Transmission of Leprosy in Brazil--An Explorative, Quantitative, Questionnaire Based Study.

BACKGROUND: Leprosy is a leading cause of preventable disability worldwide. Delay in diagnosis of patients augments the transmission of infection, and allows progression of disease and more severe disability. Delays in diagnosis greater than ten years have been reported in Brazil. To reduce this delay, it is important to identify factors that hinder patients from presenting to doctors, and those that delay doctors from diagnosing patients once they have presented. This study aimed to explore factors associated with the delayed diagnosis of leprosy in Brazil. METHODOLOGY/ PRINCIPAL FINDINGS: This is an exploratory study using a self-constructed questionnaire delivered to patients attending three leprosy referral clinics across three states in Brazil. Data were analysed to determine associations between variables and the time taken for participants to present to the health-service, and between variables and the time taken for doctors to diagnose participants once they had presented. Participants who suspected they had leprosy but feared community isolation were 10 times more likely to wait longer before consulting a doctor for their symptoms (OR 10.37, 95% CI 2.18-49.45, p = 0.003). Participants who thought their symptoms were not serious had a threefold greater chance of waiting longer before consulting than those who did (OR 3.114, 95% CI 1.235-7.856, p = 0.016). Forty-two point six per cent of participants reported initially receiving a diagnosis besides leprosy. These had a three times greater chance of receiving a later diagnosis of leprosy compared to those not misdiagnosed or not given a diagnosis (OR 2.867, 95% CI 1.288-6.384, p = 0.010). CONCLUSIONS/ SIGNIFICANCE: This study implies a need for patient education regarding leprosy symptoms and the reduction of stigma to encourage patients to present. The high rate of misdiagnosis reported suggests a need to increase clinician suspicion of leprosy. Further education regarding disease symptoms in medical school curriculums may be advisable.

Factors contributing to the delay in diagnosis and continued transmission of leprosy in Brazil - an explorative, quantitative, questionnaire based study

BACKGROUND: Leprosy is a leading cause of preventable disability worldwide. Delay in diagnosis of patients augments the transmission of infection, and allows progression of disease and more severe disability. Delays in diagnosis greater than ten years have been reported in Brazil. To reduce this delay, it is important to identify factors that hinder patients from presenting to doctors, and those that delay doctors from diagnosing patients once they have presented. This study aimed to explore factors associated with the delayed diagnosis of leprosy in Brazil. METHODOLOGY/ PRINCIPAL FINDINGS: This is an exploratory study using a self-constructed questionnaire delivered to patients attending three leprosy referral clinics across three states in Brazil. Data were analysed to determine associations between variables and the time taken for participants to present to the health-service, and between variables and the time taken for doctors to diagnose participants once they had presented. Participants who suspected they had leprosy but feared community isolation were 10 times more likely to wait longer before consulting a doctor for their symptoms (OR 10.37, 95% CI 2.18-49.45, p = 0.003). Participants who thought their symptoms were not serious had a threefold greater chance of waiting longer before consulting than those who did (OR 3.114, 95% CI 1.235-7.856, p = 0.016). Forty-two point six per cent of participants reported initially receiving a diagnosis besides leprosy. These had a three times greater chance of receiving a later diagnosis of leprosy compared to those not misdiagnosed or not given a diagnosis (OR 2.867, 95% CI 1.288-6.384, p = 0.010). CONCLUSIONS/ SIGNIFICANCE: This study implies a need for patient education regarding leprosy symptoms and the reduction of stigma to encourage patients to present. The high rate of misdiagnosis reported suggests a need to increase clinician suspicion of leprosy. Further education regarding disease symptoms in medical school curriculums may be advisable.

Treatment Behaviour of Leprosy Patients on Time Scale.

Leprosy is not a disease of modern civilization and industrialization, but its origin is as old as 4600 BC. Although the cure of leprosy is possible by MDT, there are certain misbelieves in the mind of leprosy patients leads to delay in disease reporting. Wandering of the patient from one healer to another healer also one of the cause that delays the start of MDT. It is known fact that the delayed response in getting medical treatment for leprosy causes permanent physical deformities in the patient. This study is aimed to identify the treatment behavior of leprosy patients on time scale. A total of 251 study subjects were selected randomly attending the Skin & VD OPD of S S Hospital of IMS, BHU, Varanasi. Questions related to treatment behavior on time scale were administered to leprosy patients aged 15 years or above by the interviewer himself. Time gap to start the initial treatment was significantly less in MB cases (5.3 months) as compared to PB cases (7.2 months). MB cases wasted significantly more time with allopathic treatment other than MDT. Urban patients (1.3 months) wasted more time with homeopathy than the rural patients (0.9 months). More than half the cases (51.4%) went for the treatment within three months of noticing symptoms of leprosy. There is a considerable delay in starting the MDT after noticing the first symptom of leprosy. As early as possible, measures to start the proper treatment i.e. MDT should be taken to avoid permanent disability due to leprosy.

Combination prevention: new hope for stopping the epidemic.

HIV research has identified approaches that can be combined to be more effective in transmission reduction than any 1 modality alone: delayed adolescent sexual debut, mutual monogamy or sexual partner reduction, correct and consistent condom use, pre-exposure prophylaxis with oral antiretroviral drugs or vaginal microbicides, voluntary medical male circumcision, antiretroviral therapy (ART) for prevention (including prevention of mother to child HIV transmission [PMTCT]), treatment of sexually transmitted infections, use of clean needles for all injections, blood screening prior to donation, a future HIV prime/boost vaccine, and the female condom. The extent to which evidence-based modalities can be combined to prevent substantial HIV transmission is largely unknown, but combination approaches that are truly implementable in field conditions are likely to be far more effective than single interventions alone. Analogous to PMTCT, "treatment as prevention" for adult-to-adult transmission reduction includes expanded HIV testing, linkage to care, antiretroviral coverage, retention in care, adherence to therapy, and management of key co-morbidities such as depression and substance use. With successful viral suppression, persons with HIV are far less infectious to others, as we see in the fields of sexually transmitted infection control and mycobacterial disease control (tuberculosis and leprosy). Combination approaches are complex, may involve high program costs, and require substantial global commitments. We present a rationale for such investments and cite an ongoing research agenda that seeks to determine how feasible and cost-effective a combination prevention approach would be in a variety of epidemic contexts, notably that in a sub-Saharan Africa.

Help-seeking habits of untreated leprosy patients reporting to a referral hospital in Uttar Pradesh, India.

In a potentially disabling disease like leprosy, the need for prompt diagnosis and start of treatment cannot be over-emphasized. With the advent of massive Information, Education and Communication (IEC) strategies and easy accessibility of free multi drug therapy (MDT), delay in treatment is more dependent on patient initiative and subsequent health seeking habits. To study the factors contributing to delay, a random sample of 86 new untreated leprosy patients presenting to The Leprosy Mission Community Hospital, Naini, Allahabad during 2011 were interviewed in depth with the help of a check list. 61% of patients had disability at first presentation. The most common first symptom was a hypopigmented patch. Mean delay was found to be 25.9 months. Reasons for delay varied from ignorance aboutthe symptoms and signs of the disease, monitoring of symptoms in the hope that they would disappear by themselves and lack of vigilance among local medical practitioners in the lower levels of the health system. The authors discuss the typical sequence of events that contributed to delay at each stage before finally presenting at a referral hospital. It is necessary to outline recommendations to address delay in terms of intense health education campaigns, mass communication strategies and developing a high index of suspicion among primary health care givers.

Living invisible: HTLV-1-infected persons and the lack of care in public health.

INTRODUCTION: Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can be considered a neglected public health problem and there are not many studies specifically on patients' needs and emotional experiences. OBJECTIVE: To better understand how women and men living with HTLV-1 experience the disease and what issues exist in their healthcare processes. METHODS: A qualitative study using participant observation and life story interview methods was conducted with 13 symptomatic and asymptomatic patients, at the outpatient clinic of the Emilio Ribas Infectious Diseases Institute, in Sao Paulo, Brazil. RESULTS AND DISCUSSION: The interviewees stated that HTLV-1 is a largely unknown infection to society and health professionals. Counseling is rare, but when it occurs, focuses on the low probability of developing HTLV-1 related diseases without adequately addressing the risk of infection transmission or reproductive decisions. The diagnosis of HTLV-1 can remain a stigmatized secret as patients deny their situations. As a consequence, the disease remains invisible and there are potentially negative implications for patient self-care and the identification of infected relatives. This perception seems to be shared by some health professionals who do not appear to understand the importance of preventing new infections. CONCLUSIONS: Patients and medical staff referred that the main focus was the illness risk, but not the identification of infected relatives to prevent new infections. This biomedical model of care makes prevention difficult, contributes to the lack of care in public health for HTLV-1, and further perpetuates the infection among populations. Thus, HTLV-1 patients experience an "invisibility" of their complex demands and feel that their rights as citizens are ignored.

One year follow up of a cohort of suspected leprosy cases: findings from a leprosy 'Selective Special Drive' in Gadchiroli district, Maharashtra, India.

OBJECTIVES: The study involves a follow-up visit in 2010, to hyper-endemic Gadchiroli district of Maharashtra, India, to evaluate the current status of those suspected in 2009 of having skin/nerve lesions suggestive of leprosy, and to study the interactions between such people and the State leprosy programme. DESIGN: The study cohort comprised of those confirmed with leprosy (n = 151 and 157/233 absentee 'suspects' who were not examined by the study team in 2009 in 14 of 45 Primary Health Centres (PHCs). At follow-up, the treatment status of the confirmed cases was checked from PHC registers and cross-checked by direct questioning of patients and their views were sought on PHC leprosy services. The 157 absentee 'suspects' were queried about the reasons for their absence. RESULTS: Thirty nine 'absentee suspects' were found to have leprosy. A notable feature of the follow-up visit was that 114 people in the communities, other than those listed as 'suspects' by Community Health Workers (CHWs), voluntarily sought out the team for their opinion on hypopigmented/anaesthetic lesions, which resulted in a further 39 new cases being brought to light. (Total new cases = 78). The follow-up revealed discrepancies (100% vs. 75%) between PHC records and testimonies of the registered patients about regularity of treatment; irregularity of MDT supply was cited by some for dropping out of treatment. Other reasons proffered for irregularity were lepra reaction, fear of stigma, ignorance about leprosy and preference for faith healers. Medical Officers of PHCs were not trained in the management of lepra reactions; that task, along with disability care being entrusted to a paramedical worker of an NGO during periodic visits. CONCLUSIONS: There are remediable lacunae in the recording and dispensing of MDT by the State apparatus, as well as a need for refresher training in leprosy diagnosis for PHC staff, and in lepra reaction management for medical officers. The large number (78) of new cases detected in the follow-up, in part of Gadchiroli district strongly suggests more to-be-discovered cases in the communities.

Perceptions, health seeking behaviour and access to diagnosis and treatment initiation among previously undetected leprosy cases in rural Maharashtra, India.

OBJECTIVES: To study sociodemographic profiles, perceptions about leprosy and health seeking patterns among adult leprosy patients and parents of children with leprosy detected through a prevalence survey conducted earlier, in rural areas of Panvel tehsil in Maharashtra. METHODS: The study was cross-sectional and used mixed (qualitative and quantitative) methods. Of the 97 confirmed rural leprosy cases who had been detected through the initial prevalence survey, 58 newly detected adult leprosy cases and parents of 22 children detected with leprosy were interviewed with a semistructured interview schedule between May 2008 and March 2009. FINDINGS: The study revealed that most of the leprosy patients belonged to the poor socioeconomic strata. Nearly 58% of the adult patients reported that they had been detected through the survey within 3 months of noticing their symptom(s) for the first time. Despite having been diagnosed and receiving treatment, only 48% of adult cases knew their condition as leprosy, reflecting their poor knowledge of the disease and lack of communication between providers and patients. The symptom 'patch on the skin' seems to have percolated in the community. Despite approaching the private or public sector for help in the first instance, many patients and children remained undiagnosed and untreated for leprosy. CONCLUSION: Active surveys for leprosy case detection should substitute the self-reporting approach until IEC measures are sufficiently effective to achieve a significant impact on transmission. Nevertheless both approaches will need the presence of staff with active diagnostic skills and optimal drug availability at PHCs.

Public awareness on integration of leprosy services at primary health centres in Uttar Pradesh, India.

Leprosy services were integrated into the general health a decade ago but it seems that a majority of public are still ignorant of this development. Hence, a study was done in Uttar Pradesh, India to determine the awareness about integration and its relationships to various socio-demographic factors. A multistage representative random sample of 3000 persons was chosen in Faizabad district, selecting a sample of 3 villages each situated within 1 km, 1-3 km and beyond 3 km of a PHC. A systematic random sample of 10% of households was chosen from selected villages and an adult male and an adult female from each household interviewed by a qualified investigator. Data were computerized and cross- tabulated against distance from the PHC, sex, age, education and occupational status. Only 45.7% in Uttar Pradesh are aware of the availability of leprosy treatment facilities at PHC but most knew that MDT was free. A smaller proportion was also aware of other facilities such as ulcer dressing and treatment of complications. Family members and health workers and PHC were the main source of information. It is concluded that massive efforts are urgently needed to educate the rural public on integration.

Acceptability of chemoprophylaxis for household contacts of leprosy patients in Bangladesh: a qualitative study.

OBJECTIVES: Chemoprophylaxis with single dose rifampicin is a promising intervention to prevent leprosy in close contacts of patients. However, application in control programmes often requires disclosure of the leprosy diagnosis, which is still a stigmatised disease in many countries. Promoting control and treatment of stigmatised diseases without contributing towards stigma of the individuals involved can be very difficult. The objective of this study was to assess the social acceptability of disclosure of the diagnosis and the attitude towards taking prophylactic medicines in a leprosy endemic area in Bangladesh. DESIGN: Qualitative study through focus group discussions with 136 healthy men and women from different age groups and religions, coming from two rural villages and an urban area in northwest Bangladesh, and 14 health workers with extensive experience with leprosy patients. RESULTS: The participants would not object to disclosure of the diagnosis to household members and nearby family if they were diagnosed with leprosy. However, many participants were not willing to share this information with their neighbours and other social contacts due to stigma of the disease. All healthy participants were willing to take chemoprophylaxis if any of their close contacts were diagnosed with leprosy, even after explaining that full protection against leprosy was not guaranteed. CONCLUSION: It can be concluded that chemoprophylaxis for household contacts of leprosy patients is an effective and socially acceptable addition to the current leprosy control programme. Chemoprophylaxis for other categories of contacts likely to benefit would only be feasible, without disclosure of patient information, if given in the form of mass campaigns for the whole population in the area.

Integration of leprosy in general health system vis-à-vis leprosy endemicity, health situation and socioeconomic development: observations from Chhattisgarh & Kerala.

This study looked at the integration of leprosy services in the GHS in context of health and socioeconomic situations using predefined indicators. It also looked at clients' perception of MDT services. The Indian states of Chhattisgarh and Kerala, which are at two extremes in leprosy endemicity, health situation and socioeconomic development, have been compared using predefined integration indicators related to the training of health workers, availability of MDT services, maintenance of MDT stock and involvement of Sub-centres in leprosy care. Data was collected by surveys of health facilities, sub-centres and communities in the two states, during 2006-2007. Information was collected by interviewing health personnel and clients, checking of records and on the spot observations using specifically designed formats. Results showed that integration is more inclusive in Chhattisgarh and has reached up to Sub-centre level. Both the community and health systems are sensitive and responsive to leprosy as it is perceived to be a major public health threat. But in Kerala, despite integration, it continues as a vertical programme with dependence on specialists and districts hospitals for diagnosis and treatment. MDT stock management is even poorer. Clients' perception towards MDT services are similar in both states.

Integration of leprosy into GHS in India: a follow up study (2006-2007).

In India leprosy services, were integrated into the General Health Services (GHS), in a phased manner, in different provinces, from 2001 to 2004. This study reports the findings from a follow-up operational research undertaken in 2006-2007, to assess the level of integration, on predetermined indicators related to: referral services, training of health functionaries, availability of diagnosis, treatment, MDT dispersal and counselling guidelines in health facilities, recording and reporting by GHS staff, MDT stock management and involvement of health sub-centres in different Indian provinces. Nine provinces, 18 districts, 88 health facilities and 108 sub-centres were selected, by using multistage stratified random sampling techniques. Reverse integration, as reflected by the training and deployment of vertical staff in GHS, was also assessed. Data was collected by medical officers experienced in leprosy, with the assistance of state health functionaries, and recorded on separate schedules for health facility and sub-centre levels. The study also touched on the issue of client perception towards MDT services by interviewing 149 under treatment/cured leprosy cases (who had completed treatment within the last year), in the community with the help of local interpreters. Results showed wide variations across the selected provinces in various parameters. District leprosy nuclei were understaffed in 12(66.7%) districts, and district hospitals were not working as referral institutions anywhere. The training status of medical officers and multi-purpose workers in leprosy was low in Andhra Pradesh (6.9 and 22.4%), Madhya Pradesh (26.3 and 14.5%), Rajasthan (19.7 and 40.9%) and Kerala (25.5 and 65.7%). MDT stock availability as per the National Leprosy Eradication Programme (NLEP) guidelines was not adequate in all provinces. Availability of patient counseling guidelines was nil/low in Kerala, Karnataka, West Bengal, Orissa, Rajasthan and Andhra Pradesh. The involvement of sub-centres, in case referral, recording and dispensing MDT was nil Kerala and Rajasthan and poor in Andhra Pradesh. Ninety percent of clients in Kerala and 38.0% in Andhra Pradesh and Madhya Pradesh did not get MDT in the nearest health facilities or sub-centres.

Delay in tuberculosis case detection in Pwani region, Tanzania. A cross sectional study.

BACKGROUND: Delay in Tuberculosis (TB) case detection may worsen the disease and increase TB transmission. It is also a challenge to the National TB and Leprosy control Program (NTLP). METHODS: We conducted a cross sectional study in four out of six districts in Pwani region to estimate the extent and factors responsible for delay in TB case detection in Pwani region. Delays were divided into patient, health facility and total delay. RESULTS: We enrolled a total of 226 smear positive TB patients. Out of 226 patient's results were available for 206. The majority (66.5%) of the patients were males. Mean age for males and females were 37.3 and 33.7 years respectively. Mean (SD) total delay was 125.5 (98.5) days (median 90). Out of 206 patients, 79 (38.35%) delayed to seek TB health care. Health facility delay was observed among 121 (58.7%) patients.Risk factors for delay was poor knowledge that chest pain may be a TB symptom (OR = 2.9; 95%CI 1.20- 7.03) and the belief that TB is always associated with HIV/AIDS (OR = 2.7; 95%CI 1.39-5.23). Risk for delay was low among patients who first presented to a government health facility (OR = 0.3; 95%CI 0.12- 0.71) and those presenting with chest pain (OR = 0.2; 95%CI 0.10-0.61). CONCLUSION: There is a considerable delay in TB case detection in Pwani mainly contributed by patients. Risk factors for delay include misconception about TB/HIV and poor knowledge of TB symptoms.