Stakeholder perspectives on an integrated package of care for lower limb disorders caused by podoconiosis, lymphatic filariasis or leprosy: A qualitative study.

BACKGROUND: Lower limb disorders including lymphoedema create a huge burden for affected persons in their physical and mental health, as well as socioeconomic and psychosocial consequences for them, their families and communities. As routine health services for the integrated management and prevention of lower limb disorders are still lacking, the 'Excellence in Disability Prevention Integrated across Neglected Tropical Diseases' (EnDPoINT) study was implemented to assess the development and delivery of an integrated package of holistic care-including physical health, mental health and psychosocial care-within routine health services for persons with lower limb disorders caused by podoconiosis, lymphatic filariasis and leprosy. METHODOLOGY/PRINCIPAL FINDINGS: This study was part of the first of three phases within EnDPoINT, involving the development of the integrated care package. Focus group discussions and key informant interviews were undertaken with 34 participants between January-February 2019 in Awi zone, Ethiopia, in order to assess the draft care package's feasibility, acceptability and appropriateness. Persons affected by lower limb disorders such as lymphoedema experience stigma, exclusion from families, communities and work as well as physical and financial hardship. Beliefs in disease causation inhibit affected persons from accessing care. Ignorance was a barrier for health care providers as well as affected persons. Training and education of affected persons, communities and caregivers is important in improving care access. It also requires time, space, materials and financial resources. Both top-down and grass roots input into service development are key, as well as collaboration across stakeholders including charities, community leaders and "expert patients". CONCLUSIONS/SIGNIFICANCE: This study highlighted the need for the EnDPoINT integrated care package and provided suggestions for solutions according to its three aspects of integrated care (integration into routine care; integration of mental health and psychosocial care; and integration of care across the three diseases), thereby giving support for its feasibility, acceptability and appropriateness.

The impact of podoconiosis, lymphatic filariasis, and leprosy on disability and mental well-being: A systematic review.

Leprosy, podoconiosis, and lymphatic filariasis (LF) are among the priority neglected tropical diseases (NTDs) in Ethiopia. The disability, psychosocial, and mental health status of people affected by these NTDs are still overlooked in global NTD discourse. The objective of this systematic review was to synthesize the existing evidence describing the disability, psychosocial, and mental health status of people affected by leprosy, podoconiosis, and LF prior to developing a holistic physical and psychosocial care package for these individuals. We searched papers reporting on disability, psychosocial, and mental health status linked to these 3 NTDs. The protocol was registered in PROSPERO with registration number CRD42019128400. Peer-reviewed articles were searched and extracted from Medline, PsycINFO, Global Health, and Embase. Articles published in English, irrespective of the year of publication, using a quantitative study methodology, were included. Abstracts and full texts were reviewed by 2 reviewers. Data were extracted and narratively summarized, as the studies were heterogeneous and used different outcome measures. Out of 1,318 titles/abstracts screened and 59 full text studies reviewed, 24 fulfilled the inclusion criteria. Fourteen studies provided evidence of the disability associated with leprosy, podoconiosis, or LF. Ten studies provided evidence on the association between the 3 NTDs and mental health or psychosocial outcomes. The prevalence of grade 2 disability varied from 3.9% to 86%. The most commonly reported mental health impacts were depression and mental distress. A high burden of mental illness was reported, varying from 12.6% to 71.7%; the suicidal ideation was also high (18.5%). In conclusion, disability and poor psychosocial and mental health status are associated with leprosy, podoconiosis, and LF. For optimum management of these NTDs, holistic care including both physical and psychosocial interventions is vital.

Health beliefs and health seeking behavior towards lymphatic filariasis morbidity management and disability prevention services in Luangwa District, Zambia: Community and provider perspectives.

BACKGROUND: Morbidity management and disability prevention (MMDP) services are essential for the management of chronic stages of lymphatic filariasis (LF) infection. However, there is limited information on health beliefs and health seeking behavior towards MMDP services for LF in endemic regions of Zambia. This study sought to document health beliefs and health seeking behavior towards MMDP services for LF in Luangwa District, Zambia. METHODS: This was an exploratory qualitative study conducted with community members including LF patients, community health workers and healthcare providers. Data was collected through a series of four focus group discussions stratified by sex and 26 in-depth interviews. Data was analyzed by thematic analysis using NVivo software. RESULTS: The perceived causes of the chronic manifestations of LF included; contact with animal faeces, use of traditional herbal aphrodisiacs (mutoto), witchcraft and sexual contact with women who were menstruating or had miscarried. LF patients opted to visit traditional healers before going to health facilities. Hydrocele patients were afraid of hydrocelectomies as they were thought to cause infertility or death. Very few community members were able to identify any home and facility-based care strategies for lymphoedema. Health system and cultural barriers to seeking healthcare included; long distances to the health facilities, lack of awareness of existing MMDP services, perceived costs of accessing MMDP services, gender and social norms, and fear of stigmatization. CONCLUSION: Health seeking behavior for LF in the district is mainly driven by negative beliefs about the causes of the disease and lack of awareness of available MMDP services and homecare strategies. Lymphatic filariasis programs should promote strategies that seek to empower patients and community members with the required information to access and use the MMDP services at the health facilities, as well as adhere to self-care practices in their households.

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.

Quantifying the socio-economic impact of leg lymphoedema on patient caregivers in a lymphatic filariasis and podoconiosis co-endemic district of Ethiopia.

BACKGROUND: Lymphoedema caused by lymphatic filariasis (LF) or podoconiosis can result in physical disability and social exclusion, which is exacerbated by painful acute dermatolymphangioadenitis (ADLA) episodes. These conditions have a significant impact on patients, however, little is known about the indirect effects on their caregivers. This study, therefore, aimed to determine the impact on caregivers for patients with leg lymphoedema in a co-endemic district of Ethiopia. METHODOLOGY/PRINCIPAL FINDINGS: A cross-sectional survey of lymphoedema patients and their caregivers was conducted using semi-structured questionnaires in the Southern Nation Nationalities Peoples Region (SNNPR) of Ethiopia. Lymphoedema patient information on clinical severity (mild, moderate, severe), frequency of ADLAs, their socio-demographic characteristics and the identity of main caregiver(s) was collected. Caregiver information on socio-demographic characteristics, types of care provided, their quality of life (QoL) measured across nine domains, and productivity was collected, with key indicators compared in the presence and absence of patients' ADLAs. A total of 73 patients and 76 caregivers were included. Patients were grouped by mild/moderate (n = 42, 57.5%) or severe (n = 31, 42.5%) lymphoedema, and reported an average of 6.1 (CI± 2.18) and 9.8 (CI± 3.17) ADLAs respectively in the last six months. A total of 48 (65.8%) female and 25 (34.2%) male patients were interviewed. Caregivers were predominately male (n = 45, 59.2%), and spouses formed the largest caregiving group for both female and male patients. In the absence of an ADLA, most caregivers (n = 42, 55.2%) did not provide care, but only one caregiver did not provide care during an ADLA. In the absence of an ADLA, the average time (hour:minute) spent by mild/moderate (00:17, CI: ± 00:08) and severe (00:10, CI: ± 00:07) patient caregiver per task was minimal. The time mild/moderate (00:47, CI: ± 00:11) and severe (00:51, CI: ± 00:16) patient caregivers spent per task significantly increased in the presence of an ADLA. In addition, caregivers' QoL was negatively impacted when patients experienced an ALDA, and they had to forfeit an average of 6 to 7 work/school days per month. CONCLUSION/SIGNIFICANCE: Lymphoedema and ADLAs impact negatively on patients' and their caregivers' lives. This emphasises the importance of increasing access to effective morbidity management and disability prevention services to reduce the burden and help to address the Sustainable Development Goal (SDG) 5, target 5.4, which seeks to recognise and value unpaid care and domestic work.

Neglected tropical disease as a 'biographical disruption': Listening to the narratives of affected persons to develop integrated people centred care in Liberia.

BACKGROUND: Integrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals' unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond. METHODS: We purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory. FINDINGS: For all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of 'biographical disruption' triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the 'sick role' was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and significant psycho-social difficulty occurred. An intersectional lens emphasises how biographical disruption is mediated by intersecting social processes. Gender, generation, and disability were all dominant axes of social inequity shaping experience. SIGNIFICANCE: This is one of the first studies to use narrative approaches to interrogate experience of chronic disabling conditions within LMICs and is the only study to apply such an analysis to NTDs. The emotive power of narrative should be utilised to influence the value base of policy makers to ensure that DMDI strategies respond holistically to the needs of the most marginalised, thus contributing to more equitable people-centred care.

Prevalence of malaria and lymphatic filariasis in bateyes of the Dominican Republic.

BACKGROUND: The island of Hispaniola, shared by Haiti and the Dominican Republic (DR), is the only remaining malaria-endemic island in the Caribbean and accounts for 95% of the lymphatic filariasis (LF) burden in the Americas. Both countries aim to eliminate the diseases by 2020. Migration from Haiti, where both diseases are more prevalent, may promote transmission in the DR. Historically, Haitian migrant labourers live in rural Dominican agricultural 'company towns' called bateyes, many of which received mass drug administration (MDA) for LF elimination. This study sought to determine the prevalence of malaria and LF in bateyes of the DR and to describe related risk factors for disease. METHODS: From March to April 2016, a cross-sectional, cluster survey was conducted across Dominican bateyes stratified into three regions: southwest, north and east. A household questionnaire (n = 776), captured demographics, ethnic origin, mobility patterns, malaria intervention coverage, and knowledge, and recent fever and treatment-seeking. Two individuals per household (n = 1418) were tested for malaria parasites by microscopy and rapid diagnostic test (RDT) and LF antigen by filariasis test strip (FTS). Population-level estimates and confidence intervals (CI) were computed adjusting for the survey design. Two-sided t-tests compared differences in knowledge scores. RESULTS: No (0%) blood sample was Plasmodium-positive by microscopy or RDT. Six individuals were FTS-positive (0.5%; 95% CI: 0.2-1.5), but none (0%) of these were microfilariae-positive. Most batey residents were born in the DR (57.8%), documented (85.0%), and permanent residents (85.1%). Very few respondents (9.4%) reported travel to Haiti in the past year. Overall, half (53.8%) of respondents owned a bed net, and 82.3% of net owners reported using it the previous night. Indoor residual spraying (IRS) differed by region (range: 4.7%-61.2%). Most of those with recent fever sought care (56.0%), yet only 30.5% of those seeking care were tested for malaria. Compared to Dominican-born populations, Haitian-born respondents more frequently reported recent fever, did not seek care for the fever, had not heard of malaria, and could not name symptoms or prevention methods. CONCLUSIONS: Malaria and LF transmission appear absent or extremely low in Dominican bateyes, which are a mixture of Haitian and Dominican residents. Travel to Haiti is rare, meaning risk of malaria and LF importation is low. Addressing identified gaps in intervention coverage, malaria knowledge, treatment seeking and service delivery will improve the quality of surveillance for these diseases, particularly among marginalized populations and promote island-wide elimination.

Emotional Difficulties and Experiences of Stigma among Persons with Lymphatic Filariasis in Plateau State, Nigeria.

Lymphatic filariasis (LF) is a chronic and often disfiguring condition that predominantly affects the rural poor and leads to social exclusion, stigma, and discrimination. Little is currently known about the emotional difficulties and stigma experiences among persons living with LF in Nigeria. Our study evaluated the emotional difficulties and stigma experienced by persons with LF in Plateau State, Nigeria. We utilized a combination of qualitative data instruments comprising focus group discussions, McGill's Illness Narrative Interviews, and key informant interviews. We transcribed and analyzed the data using a combination of inductive and deductive coding approaches. Sixty-nine respondents were interviewed: 37 females and 32 males. The prevalent community perception of LF was the belief that it was a spiritual problem. Emotional reactions included feelings of sadness, hopelessness, anger, frustration, worry, and suicidal ideation. These experiences, including those of stigma, discrimination, and social exclusion, culminated in difficulties with occupational functioning, marital life, and community participation. Our findings highlight the value of a rights-based approach that emphasizes state and non-state actors' need to provide access to the highest attainable standard of health, including mental health, and to protect persons with LF from stigma, discrimination, and social exclusion.

Building Trust through Lymphatic Filariasis Elimination: A Platform to Address Social Exclusion and Human Rights in the Dominican Republic.

Hispaniola, the Caribbean island that includes the countries of Haiti and the Dominican Republic (DR), accounts for 90% of lymphatic filariasis (LF) in the Americas. Both countries have committed to LF elimination by 2020. In the DR, LF occurs mainly in bateyes, or company towns that historically hosted migrant laborers from Haiti. A legacy of anti-Haitian discrimination as well as the 2013 Sentencia, which stripped generations of Haitian-descended Dominicans of their citizenship, ensure that this population remains legally, economically, and socially marginalized. Despite this context, the country's LF elimination program (PELF) has worked in bateyes to eliminate LF through health education and annual drug treatment to interrupt parasite transmission. Based on interviews with batey residents and observations of PELF activities from February-April 2016, this study describes local understandings of social exclusion alongside the PELF community-based approach. The Sentencia reinforced a common perception shared by batey residents: that their lives were unimportant, even unrecognized, in Dominican society. At the same time, the government-run PELF has generated trust in government health activities and partially counteracts some of the effects of social exclusion. These findings suggest that neglected tropical disease (NTD) programs can not only improve the health of marginalized populations, but also create a platform for improving human rights.

A Storytelling Approach: Insights from the Shambaa.

Narrative medicine explores the stories that patients tell; this paper, conversely, looks at some of the stories that patients are told. The paper starts by examining the 'story' told by the Shambaa people of Tanzania to explain the bubonic plague and contrasts this with the stories told by Ghanaian communities to explain lymphatic filariasis. By harnessing insights from memory studies, these stories' memorability is claimed to be due to their use mnemonic devices woven into stories. The paper suggests that stories can be unpatronising, informative, and appropriate vehicles for communicating medical information to all age groups across all cultures.

Assessing the feasibility of integration of self-care for filarial lymphoedema into existing community leprosy self-help groups in Nepal.

BACKGROUND: Lymphatic filariasis (LF) and leprosy are disabling infectious diseases endemic in Nepal. LF infection can lead to lymphoedema and hydrocoele, while secondary effects of leprosy infection include impairments to hands, eyes and feet. The disabling effects of both conditions can be managed through self-care and the supportive effects of self-help groups (SHGs). A network of SHGs exists for people affected by leprosy in four districts in Nepal's Central Development Region, however no such service exists for people affected by LF. The aim of this study was to determine the feasibility of integrating LF affected people into existing leprosy SHGs in this area. METHODS: A survey was conducted using a semi-structured questionnaire to elicit information on: (i) participant characteristics, clinical manifestation and disease burden; (ii) participants' knowledge of management of their condition and access to services; and (iii) participants' knowledge and perceptions of the alternate condition (LF affected participants' knowledge of leprosy and vice versa) and attitudes towards integration. RESULTS: A total of 52 LF affected and 53 leprosy affected participants were interviewed from 14 SHGs. On average, leprosy affected participants were shown to have 1.8 times greater knowledge of self-care techniques, and practiced 2.5 times more frequently than LF affected participants. Only a quarter of LF affected participants had accessed a health service for their condition, compared with 94.3% of leprosy affected people accessing a service (including SHGs), at least once a week. High levels of stigma were perceived by both groups towards the alternate condition, however, the majority of LF (79%) and leprosy (94.3%) affected participants stated that they would consider attending an integrated SHG. CONCLUSIONS: LF affected participants need to increase their knowledge of self-care and access to health services. Despite stigma being a potential barrier, attitudes towards integration were positive, suggesting that the SHGs may be a good platform for LF affected people to start self-care in this area. TRIAL REGISTRATION: This is not a registered trial.

Perceptions, knowledge, attitudes and practices for the prevention and control of lymphatic filariasis in Conakry, Republic of Guinea.

Little is known about the perceptions, attitudes and practices of lymphatic filariasis in Conakry, Republic of Guinea. Yet, such knowledge is important for an optimal design and implementation of setting-specific prevention and control measures. We conducted a cross-sectional study using a mixed methods approach. Qualitative data related to people's general experience with lymphatic filariasis, their perception of the causes of the disease, the onset of elephantiasis, care-seeking behaviour and the socioeconomic impact of lymphatic filariasis were collected through in-depth interviews with 85 respondents. Quantitative data related to strategies for prevention and the knowledge of the causes of the disease were collected by interviewing 429 people. A total of 514 individuals (313 females and 201 males), aged 10-84 years, participated. Most participants were well aware of lymphatic filariasis and they recognized the disease mainly by its disfiguring manifestation, collectively termed "elephantiasis" or "leg-swelling disease". Morbidity patterns due to filarial infection showed an increase with age (from 30 to 50 years) independent of sex. Most patients with lymphatic filariasis abandoned their jobs (73.9%) or sought other work (21.7%). The main perceived causes of acquiring lymphatic filariasis were of supernatural origin (as stated by 8.7% of patients and 5.7% of healthy subjects), while mosquito bites were mentioned by fewer participants (4.3% of patients and 4.2% of healthy subjects). A number of other causes were reported that relate to both medical and non-medical conceptions. The study also identified socioeconomic impairments and stigmatization due to elephantiasis. Taken together, community perception of lymphatic filariasis in Conakry is influenced by sociocultural conceptions. Appropriate health education campaigns aimed at enhancing community understanding of the transmission of lymphatic filariasis are required to increase the success of mass drug administration implemented for the elimination of this disease. There is a need for a morbidity management programme to alleviate lymphatic filariasis-related physical and emotional burden in Conakry.

Prevalence of depression and associated clinical and socio-demographic factors in people living with lymphatic filariasis in Plateau State, Nigeria.

BACKGROUND: Lymphatic filariasis is a chronic, disabling and often disfiguring condition that principally impacts the world's poorest people. In addition to the well-recognised physical disability associated with lymphedema and hydrocele, affected people often experience rejection, stigma and discrimination. The resulting emotional consequences are known to impact on the quality of life and the functioning of the affected individuals. However, the management of this condition has focused on prevention and treatment through mass drug administration, with scant attention paid to the emotional impact of the condition on affected individuals. This study aimed to determine the prevalence and severity of depression among individuals with physical disfigurement from lymphatic filariasis in Plateau State, Nigeria. METHODOLOGY: A cross-sectional 2-stage convenience study was conducted at 5 designated treatment centers across Plateau State, Nigeria. All available and consenting clients with clearly visible physical disfigurement were recruited. A semi-structured socio-demographic questionnaire, Rosenberg Self-esteem and a 9-item Patient Health Questionnaire (PHQ-9) were administered at the first stage. Those who screened positive (with a PHQ-9 score of five and above) were further interviewed using the Depression module of the Composite International Diagnostic Interview (CIDI). RESULTS: Ninety-eight individuals met the criteria and provided consent. Twenty percent of the respondents met criteria for depression, with the following proportions based on severity: Mild (42.1%), Moderate (31.6%) and Severe (26.3%). History of mental illness (OR 40.83, p = 0.008); Median duration of the illness was 17 years (IQR 7.0-30 years) and being unemployed (OR 12.71, p = 0.003) were predictive of depression. High self-esteem was negatively correlated (OR 0.09, p<0.004). CONCLUSION: Prevalence of depression is high among individuals with lymphatic filariasis and depression in sufferers is associated with low self-esteem and low levels of life satisfaction.

Physical, psychological, and social aspects of quality of life in filarial lymphedema patients in Colombo, Sri Lanka.

Quality of life (QOL) was assessed in 141 filarial lymphedema patients and 128 healthy people in the Colombo district, Sri Lanka, by administering modified, translated, and validated (in Sri Lanka) versions of the Short Form 36 health survey questionnaire (SF-36) and the 30-item General Health questionnaire (GHQ-30). The GHQ-30 assesses the current mental health status. The SF-36 measures health on 8 multi-item dimensions covering functional state, well-being, and overall evaluation of health (physical functioning, role limitations resulting from physical health problems, role limitations resulting from emotional problems, energy/fatigue, emotional well-being, social functioning, pain and general health). By SF-36, patients experienced poorer physical functioning, more role limitations resulting from physical health conditions, less emotional well-being, poorer social functioning, and more pain than healthy individuals. By GHQ-30, mental well-being of healthy controls was significantly better than that of patients. The significant difference in the QOL as perceived by filarial lymphedema patients and healthy individuals reiterates the importance of morbidity control in patients affected by this disease.

Comparison of three quality of life instruments in lymphatic filariasis: DLQI, WHODAS 2.0, and LFSQQ.

BACKGROUND: The Global Program to Eliminate Lymphatic Filariasis aims to interrupt transmission of lymphatic filariasis and manage morbidity in people currently living with the disease. A component of morbidity management is improving health-related quality of life (HRQoL) in patients. Measurement of HRQoL in current management programs is varied because of the lack of a standard HRQoL tool for use in the lymphatic filariasis population. METHODOLOGY/PRINCIPAL FINDINGS: In this study, the psychometric properties of three health status measures were compared when used in a group of lymphatic filariasis patients and healthy controls. The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0), the Dermatology Life Quality Index (DLQI), and the Lymphatic Filariasis Quality of Life Questionnaire (LFSQQ) were administered to 36 stage II and stage III lymphatic filariasis subjects and 36 age and sex matched controls in Kerala, India. All three tools yielded missing value rates lower than 10%, suggesting high feasibility. Highest internal consistency was seen in the LFSQQ (α = 0.97). Discriminant validity analysis demonstrated that HRQoL was significantly lower in the LF group than in controls for the WHODAS 2.0, DLQI, and LFSQQ, but total HRQoL scores did not differ between stage II and stage III lymphedema subjects. The LFSQQ total score correlated most strongly with the WHODAS 2.0 (r = 0.91, p<0.001) and DLQI (r = 0.81, p<0.001). CONCLUSIONS/SIGNIFICANCE: The WHODAS 2.0, DLQI, and LFSQQ demonstrate acceptable feasibility, internal consistency, discriminate validity, and construct validity. Based on our psychometric analyses, the LFSQQ performs the best and is recommended for use in the lymphatic filariasis population.

The use of focus groups to develop a culturally relevant quality of life tool for lymphatic filariasis in Bangladesh.

PURPOSE: The purpose of this study was to conduct focus groups to operationalise the construct of quality of life (QOL) for people living with lymphatic filariasis (LF) in Bangladesh to develop culturally valid items for a Bangladeshi LF QOL tool. METHODS: Ten focus groups were conducted with a stratified purposeful sample (n = 60) of LF patients (3 focus groups, n = 17), doctors (1 focus group, n = 5), nurses (1 focus group, n = 6) and other hospital staff (1 focus group, n = 5), community leaders (2 focus groups, n = 14), community volunteer health workers (1 focus group, n = 5) and Bangladeshi LF researchers and planners (1 focus group, n = 8). Focus group methodology was informed by local culture in consultation with cultural mentors and local advisors, often going against standard focus group procedures. Data were collected through note taking, audio taping, transcripts, observational notes and a reflection diary. Open coding of transcript data was completed until data saturation was achieved. RESULTS: Forty-three constructs were identified through the focus groups that had not previously been identified in the literature, including constructs relating to environmental supports and barriers, activities, participation and psychological impacts. There were marked differences between the impacts reported by different groups, highlighting the need for a comprehensive purposive sample. In particular, contributions from participants who would not traditionally be viewed as "experts" were vital. CONCLUSIONS: The use of focus groups strongly contributed to the operationalisation of the concept of QOL in Bangladesh for people living with LF. Use of literature review or expert opinion alone would have missed vital constructs.

Knowledge and practice related to compliance with mass drug administration during the Egyptian national filariasis elimination program.

Lymphatic filariasis (LF) has been targeted for global elimination by 2020. The primary tool for the program is mass drug administration (MDA) with antifilarial medications to reduce the source of microfilariae required for mosquito transmission of the parasite. This strategy requires high MDA compliance rates. Egypt initiated a national filariasis elimination program in 2000 that targeted approximately 2.7 million persons in 181 disease-endemic localities. This study assessed factors associated with MDA compliance in year three of the Egyptian LF elimination program. 2,859 subjects were interviewed in six villages. The surveyed compliance rate for MDA in these villages was 85.3% (95% confidence interval = 83.9-86.5%). Compliance with MDA was positively associated with LF knowledge scores, male sex, and older age. Adverse events reported by 18.4% of participants were mild and more common in females. This study has provided new information on factors associated with MDA compliance during Egypt's successful LF elimination program.

Impact of community-based lymphedema management on perceived disability among patients with lymphatic filariasis in Orissa State, India.

BACKGROUND: Lymphatic filariasis (LF) infects approximately 120 million people worldwide. As many as 40 million have symptoms of LF disease, including lymphedema, elephantiasis, and hydrocele. India constitutes approximately 45% of the world's burden of LF. The Indian NGO Church's Auxiliary for Social Action (CASA) has been conducting a community-based lymphedema management program in Orissa State since 2007 that aims to reduce the morbidity associated with lymphedema and elephantiasis. The objective of this analysis is to evaluate the effects of this program on lymphedema patients' perceived disability. METHODOLOGY/PRINCIPAL FINDINGS: For this prospective cohort study, 370 patients ≥14 years of age, who reported lymphedema lasting more than three months in one or both legs, were recruited from villages in the Bolagarh sub-district, Khurda District, Orissa, India. The World Health Organization Disability Assessment Schedule II was administered to participants at baseline (July, 2009), and then at regular intervals through 24 months (July, 2011), to assess patients' perceived disability. Disability scores decreased significantly (p<0.0001) from baseline to 24 months. Multivariable analysis using mixed effects modeling found that employment and time in the program were significantly associated with lower disability scores after two years of program involvement. Older age, female gender, the presence of other chronic health conditions, moderate (Stage 3) or advanced (Stage 4-7) lymphedema, reporting an adenolymphangitis (ADL) episode during the previous 30 days, and the presence of inter-digital lesions were associated with higher disability scores. Patients with moderate or advanced lymphedema experienced greater improvements in perceived disability over time. Patients participating in the program for at least 12 months also reported losing 2.5 fewer work days per month (p<0.001) due to their lymphedema, compared to baseline. SIGNIFICANCE: These results indicate that community-based lymphedema management programs can reduce disability and prevent days of work lost. These effects were sustained over a 24 month period.

Cognitive testing of the WHOQOL-BREF Bangladesh tool in a northern rural Bangladeshi population with lymphatic filariasis.

PURPOSE: The purpose of this study was to test the cultural suitability of the WHOQOL-BREF Bangladesh for a rural village population in Bangladesh. METHODS: Participants (n = 35) were purposefully stratified for age, gender, education level and location from the Nilphamari district in northern rural Bangladesh. Cognitive interviews were conducted via an emergent probing method to identify issues with language and constructs within the tool. Data were collected through note taking and recordings of interviews. A coding framework was used to identify key issues with questions, which were analysed using SPSS version 19 and Chi-square analysis using a Fisher's exact test to determine statistically significant variances within the sample. RESULTS: Twenty-two of the 26 questions in the tool were found to be problematic. The majority of problems with questions related to wording and conceptual difficulties. The majority of participants found the tool to be overly formal. Issues with translation appeared to affect the interpretation of a number of questions, and some concepts in the tool were found to be irrelevant in a village setting. There were statistically significant differences between those of different educational backgrounds and between genders. CONCLUSIONS: The study found that the WHOQOL-BREF Bangladesh as it currently stands is not culturally or linguistically suitable for use within a rural northern Bangladeshi population.