Health-related quality of life and associated factors among adult podoconiosis patients in Debre Elias district Northwest, Ethiopia.

BACKGROUND: Podoconiosis is endemic non-filarial elephantiasis and non-infective neglected tropical disease. It has a wide impact on the physical, social and psychological aspects of the well-being of a person. However, limited information is available about the disease burden on health-related quality of life and associated factors in Ethiopia. OBJECTIVE: This study aimed is to determine health-related quality of life and associated factors among adult podoconiosis patients in Debre Elias district, Northwest, Ethiopia. METHODS: A community-based cross-sectional study was conducted from February 1 to March 30, 2020 in the Debre Elias district. A multi-stage stratified; systematic random sampling technique was employed to select 403 podoconiosis patients. The data were collected through an interviewer-administered questionnaire. Data were entered into Epi data version 4.6 and exported to STATA version 14 for analysis. After the assumption check for the linear regression model, simple and multiple regression was done to see the association between the predictor and outcome variables. Predictor variables that had p-value <0.2 at simple linear regression were taken into multiple linear regression. ß coefficient with 95% CI and p-value of <0.05 was considered as statistically significant variables in multiple linear regression analysis. RESULT: The overall mean quality of life score among podoconiosis patients was 61.93±17.14. The mean quality of life score for the physical, psychological, social, and environmental domains were 75.57±21.86, 60.43±18.58, 30.34±10.46, and 81.38±22.77 respectively. Foot care had a statically significant association with all domains. Higher quality of life podoconiosis patients was associated with foot care. Lower quality of life was associated with the presence of anxiety, advanced stage of the disease, and frequent adenolymphangitis attack. CONCLUSION: Social and psychological domains of quality of life were lowest as compared to physical and environmental domains of quality of life. Early medical treatment, psychosocial support, and home-based foot care should be encouraged to improve the quality of life in podoconiosis patients.

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.

Podoconiosis in Rwanda: Knowledge, attitudes and practices among health professionals and environmental officers.

BACKGROUND: Podoconiosis is a neglected tropical disease commonly found in volcanic regions, where soil is rich in silica. It usually manifests as bilateral lower limb edema. The majority of people affected by podoconiosis are farmers who do not wear shoes. The condition was recently documented in all 30 districts in Rwanda but knowledge, attitudes and practices (KAP) of Rwandan health professionals and environmental officers towards podoconiosis are unknown. METHODOLOGY/FINDINGS: The objective of this study was to assess the knowledge, attitudes and practices (KAP) of Rwandan health providers and environmental officers towards podoconiosis in order to improve patient healthcare experiences and health outcomes, and to reduce stigma against affected individuals. To achieve this goal, we administered a KAP assessment to physicians (N = 13), nurses/midwives (N = 59), community health workers (N = 226), and environmental officers (N = 38) in the third highest podoconiosis prevalence district in Rwanda (Musanze). All 336 respondents had heard of podoconiosis, but 147 (44%) respondents correctly identified soil as the only direct cause of podoconiosis. The awareness of signs and symptoms and risk groups was lower than any other category (31.5% and 47.5%, respectively). The overall attitude toward podoconiosis was positive (86.1%), with CHWs least likely to harbor negative beliefs against podoconiosis patients. One particular area where most respondents (76%) expressed negative attitude was that they saw people with podoconiosis as a threat to their own health and their family's health. Prescription of antibiotics and use of ointments/soap to manage wounds was low (5% and 32.2%, respectively), in part due to supply shortages at health facilities. CONCLUSIONS: This study identified clear gaps in health provider knowledge and practices that affect patient care for those with podoconiosis. Improved access to essential medicines at health facilities and podoconiosis-focused training sessions for practicing health providers are necessary to minimize the burden and stigma of affected individuals.

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.

'I should not feed such a weak woman'. Intimate partner violence among women living with podoconiosis: A qualitative study in northern Ethiopia.

BACKGROUND: Intimate Partner Violence (IPV) is a serious, preventable public health problem that affects millions of people worldwide. Research indicates that adults suffering from long term, disabling conditions are more likely to be victims of IPV due to the intersection of disease-associated stigma and discrimination. IPV in turn is known to worsen the overall health and wellbeing of those affected by it. Little research however explores the relationship between neglected tropical diseases such as podoconiosis and IPV. This study explores the relationship between IPV and podoconiosis in northern Ethiopia with the aim of identifying new avenues for limiting disability and promoting the wellbeing of people affected by this neglected tropical disease. METHODS: The study was conducted in East and West Gojjam zones, located in the Amhara Regional State of Ethiopia. Research participants were first screened using the domestic violence screening tool Hurt-Insult-Threaten-Scream (HITS). Data were collected by native speakers of the local language (Amharic) in the form of semi-structured interviews during January and February 2016. Thematic and content data analysis was carried out, using the Open Code 3.4 qualitative data analysis software for coding. RESULTS: A total of 15 women living with podoconiosis and experiencing IPV were interviewed (aged 31 to 75). Women experienced different forms of IPV, including beatings (with or without an object), insults, name calling, undermining, denial of equal rights over common assets, movement monitoring, cheating, abandonment, forced divorce, obstruction of health care access, inhibition of decision-making and sexual coercion. Podoconiosis increases the frequency and severity of IPV and in occasions shapes a change from physical to psychological and financial violence. In turn, frequent episodes of IPV worsen disease outcomes and contribute to disease persistence in the region, in that these impede women's ability to manage the disease and help perpetuate the conditions of poverty that influence disease onset. CONCLUSIONS: Women living with podoconiosis are victims of various, overlapping forms of IPV that negatively impact their health and wellbeing. Poverty, scarce IPV prevention services in the area together with a social acceptance of IPV and these women's decreased ability to work due to the debilitating effects of podoconiosis and childcare responsibilities frequently prompt these women to tolerate IPV and remain in abusive relationships. Tackling disease-associated taboo and stigma, developing accessible IPV interventions, working towards greater gender equality at the household and societal levels and developing sustainable strategies for improving the socio-economic assets of women affected by podoconiosis are all necessary to both prevent IPV and to improve disease outcome.

Rural youths' understanding of gene x environmental contributors to heritable health conditions: The case of podoconiosis in Ethiopia.

OBJECTIVES: Assess the feasibility of engaging youth to disseminate accurate information about gene by environmental (GxE) influences on podoconiosis, a neglected tropical lymphedema endemic in southern Ethiopia. METHODS: A cross sectional survey was conducted with 377 youth randomly selected from 2 districts of Southern Ethiopia. Measures included GxE knowledge (4 true/false statements), preventive action knowledge (endorse wearing shoes and foot hygiene), causal misconceptions (11 items related to contagion) and confidence to explain GxE (9 disagree/agree statements). RESULTS: Over half (59%) accurately endorsed joint contributions of gene and environment to podoconiosis and preventive mechanisms (e.g., wearing protective shoes and keeping foot hygiene). Multivariable logistic regression showed that youth with accurate understanding about GxE contributors reported having: some education, friends or kin who were affected by the condition, and prior interactions with health extension workers. Surprisingly, higher accurate GxE knowledge was positively associated with endorsing contagion as a causal factor. Accuracy of GxE and preventive action knowledge were positively associated with youth's confidence to explain podoconiosis-related information. CONCLUSIONS: Youth have the potential to be competent disseminators of GxE information about podoconiosis. Interventions to foster confidence among youth in social or kin relationships with affected individuals may be most promising. Efforts to challenge youth's co-existing inaccurate beliefs about contagion could strengthen the link of GxE explanations to preventive actions.

Depression and disability in people with podoconiosis: a comparative cross-sectional study in rural Northern Ethiopia.

BACKGROUND: Little is known about depressive symptoms in podoconiosis despite the independent contribution of depression to worse health outcomes and disability in people with other chronic disorders. METHOD: Two-hundred and seventy-one individuals with podoconiosis and 268 healthy neighbours (individuals from the nearest household in any direction) were investigated for depressive symptoms using a validated Amharic version of the Patient Health Questionnaire (PHQ-9). The WHO Disability Assessment Schedule II (WHODAS II) tool was used to measure disability. Logistic regression and zero inflated negative binomial regression were used to identify factors associated with elevated depressive symptoms, and disability, respectively. RESULTS: Among study participants with podoconiosis, 12.6% (34/269) had high levels of depressive symptoms (scoring 5 or more points on the PHQ-9, on two assessments two weeks apart) compared to 0.7% (2/268) of healthy neighbours (p<0.001). Having podoconiosis and being older were significantly associated with increased odds of a high PHQ-9 score (adjusted odds ratios [AOR] 11.42; 95% CI: 2.44-53.44 and AOR 1.04; 95% CI: 1.00-1.08, respectively). Significant predictors of a higher disability score were having podoconiosis (WHODAS II multiplier value: 1.48; 95% CI: 1.39-1.58) and having a high PHQ-9 score (1.07; 95% CI: 1.06-1.08). CONCLUSION: We recommend integrating evidence-based treatments for depression into podoconiosis interventions.

Podoconiosis treatment in northern Ethiopia (GoLBet): study protocol for a randomised controlled trial.

BACKGROUND: Podoconiosis is one of the forgotten types of leg swelling (elephantiasis) in the tropics. Unlike the other, better-known types of leg swelling, podoconiosis is not caused by any parasite, virus or bacterium, but by an abnormal reaction to minerals found in the clay soils of some tropical highland areas. Non-governmental Organizations (NGOs) have been responsible for the development of simple treatment methods without systematic evaluation of its effectiveness. It is essential that a large scale, fully controlled, pragmatic trial of the intervention is conducted. We aim to test the hypothesis that community-based treatment of podoconiosis lymphoedema reduces the frequency of acute dermatolymphangioadenitis episodes ('acute attacks') and improves other clinical, social and economic outcomes. METHODS/DESIGN: This is a pragmatic, individually randomised controlled trial. We plan to randomly allocate 680 podoconiosis patients from the East Gojjam Zone in northern Ethiopia to one of two groups: 'Standard Treatment' or 'Delayed Treatment'. Those randomised to standard treatment will receive the hygiene and foot-care intervention from May 2015 for one year, whereas those in the control arm will be followed through 2015 and be offered the intervention in 2016. The trial will be preceded by an economic context survey and a Rapid Ethical Assessment to identify optimal methods of conveying information about the trial and the approaches to obtaining informed consent preferred by the community. The primary outcome will be measured by recording patient recall and using a simple, patient-held diary that will be developed to record episodes of acute attacks. Adherence to treatment, clinical stage of disease, quality of life, disability and stigma will be considered secondary outcome measures. Other outcomes will include adverse events and economic productivity. Assessments will be made at baseline and at 3, 6, 9 and 12 months thereafter. DISCUSSION: The evidence is highly likely to inform implementation of the new master plan for integrated control of Neglected Tropical Diseases (NTDs), in which podoconiosis is identified as one of eight NTDs prioritised for control. Potentially, an estimated 3 million patients in Ethiopia will therefore benefit from the results of this trial. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number. REGISTRATION NUMBER: ISRCTN67805210. Date of registration: 24 January 2013.

Mental distress and podoconiosis in Northern Ethiopia: a comparative cross-sectional study.

BACKGROUND: The stigma, deformity and disability related to most neglected tropical diseases may lead to poor mental health. We aimed to assess the comorbidity of podoconiosis and mental distress. METHODS: A comparative cross-sectional study was conducted in 2012, including 346 people with podoconiosis and 349 healthy neighbourhood controls. Symptoms of mental distress were assessed using the validated Amharic translation of the Kessler-10 scale (K10). A linear regression analysis was conducted to identify factors associated with mental distress. RESULTS: The mean K10 score was 15.92 (95% CI: 15.27 to 16.57) in people with podoconiosis and 14.49 (95% CI: 13.85 to 15.12) in controls (average K10 scores 1.43 points higher [95% CI: 0.52 to 2.34]). In multivariate linear regression of K10 scores, the difference remained significant when adjusted for gender, income, alcohol use, age, place of residence and family history of mental illness. In the adjusted model, people with podoconiosis had K10 scores 1.37 points higher than controls (95% CI: 0.64 to 2.18). Other variables were also associated with high K10 scores: women had K10 scores 1.41 points higher than men (95% CI: 0.63 to 2.18). Those with family history of mental illness had K10 scores 3.56 points higher than those without (95% CI: 0.55 to 6.56). CONCLUSIONS: This study documented a high burden of mental distress among people with podoconiosis compared with healthy controls. Taking this finding in the context of the high stigma and reduced quality of life, we recommend integration of psychosocial care into the current morbidity management of podoconiosis.

Stigma towards a neglected tropical disease: felt and enacted stigma scores among podoconiosis patients in Northern Ethiopia.

BACKGROUND: Podoconiosis, or non-filarial elephantiasis, is a neglected tropical disease (NTD) characterised by swelling of the lower legs. When left untreated, this disfiguring condition has a significant social impact. This study aimed to describe the stigma experience among podoconiosis patients in Dembecha, Northern Ethiopia and assess potential associations between stigma and sociodemographic determinants. METHODS: The study was conducted in May 2012 in Northern Ethiopia. A questionnaire-based cross-sectional study design was used and stigma was assessed using a validated podoconiosis stigma scale including 'felt' and 'enacted' stigma domains. Enacted stigma includes the experience of discrimination such as abuse, loss of employment or prejudicial attitudes, while felt stigma is the perceived fear of enacted stigma. A multivariable linear regression model was used to explore determinants that may be associated with stigma. RESULTS: A total of 346 clinically confirmed podoconiosis patients participated in the study. The total mean score of all stigma scale items was 30.7 (Range = 0 to 96). There was a higher mean score of scale items in domains of felt stigma (21.7; Range = 0 to 45) as compared to enacted stigma (9.0; Range = 0 to 51). The total mean score of all stigma scale items appeared to increase with disease stage. A final adjusted linear regression model found an association between stigma and factors including monthly income, duration lived in the current residence, and disease stage, after controlling for confounders. CONCLUSION: Podoconiosis is a stigmatized disease with a clear social impact. This paper documented the burden of podoconiosis-related stigma and identified associated factors. Programs aimed at preventing and treating podoconiosis should incorporate interventions to mitigate both felt and enacted stigma. Interventions targeting patients should prioritize those with advanced disease.

The impact of podoconiosis on quality of life in Northern Ethiopia.

BACKGROUND: Podoconiosis is one of the most neglected tropical diseases, which untreated, causes considerable physical disability and stigma for affected individuals. Little is known about the quality of life (QoL) of patients with podoconiosis. This study aimed to assess the QoL of patients with podoconiosis in comparison with healthy controls in Ethiopia. METHODS: A comparative cross-sectional study was conducted in May 2012, among 346 clinically confirmed adult patients with podoconiosis, and 349 healthy adult neighbourhood controls in Dembecha woreda (district) in northern Ethiopia. QoL was assessed using the validated Amharic version of the World Health Organisation Quality of Life questionnaire (WHOQoL-BREF) scale; in addition, mental health and stigma were assessed by the Kessler-10 scale and podoconiosis stigma scale respectively. Logistic regression analysis was done to identify factors associated with QoL. RESULTS: Patients with podoconiosis had significantly lower mean overall QoL than the controls (52.05 versus 64.39), and this was also true in all four sub domains (physical, psychological, social and environmental). Controls were 7 times more likely to have high (above median) QoL (Odds Ratio = 6.74, 95% Confidence Interval 4.62 to 9.84) than cases. Factors associated with lower QoL were: experiencing high levels of stigma, living in an urban area, being illiterate, having additional co-morbidities, and being unmarried. Mental illness was associated with lower scores in psychological and physical domains. CONCLUSIONS: Programs targeting podoconiosis interventions should include QoL as an indicator for monitoring progress. Interventions targeting improvement of QoL among patients with podoconiosis should address depression, stigma and other co-morbidities.

Development of a scale to measure stigma related to podoconiosis in Southern Ethiopia.

BACKGROUND: Health-related stigma adds to the physical and economic burdens experienced by people suffering from neglected tropical diseases (NTDs). Previous research into the NTD podoconiosis showed significant stigma towards those with the disease, yet no formal instrument exists by which to assess stigma or interventions to reduce stigma. We aimed to develop, pilot and validate scales to measure the extent of stigma towards podoconiosis among patients and in podoconiosis-endemic communities. METHODS: Indicators of stigma were drawn from existing qualitative podoconiosis research and a literature review on measuring leprosy stigma. These were then formulated into items for questioning and evaluated through a Delphi process in which irrelevant items were discounted. The final items formed four scales measuring two distinct forms of stigma (felt stigma and enacted stigma) for those with podoconiosis and those without the disease. The scales were formatted as two questionnaires, one for podoconiosis patients and one for unaffected community members. 150 podoconiosis patients and 500 unaffected community members from Wolaita zone, Southern Ethiopia were selected through multistage random sampling to complete the questionnaires which were interview-administered. The scales were evaluated through reliability assessment, content and construct validity analysis of the items, factor analysis and internal consistency analysis. RESULTS: All scales had Cronbach's alpha over 0.7, indicating good consistency. The content and construct validity of the scales were satisfactory with modest correlation between items. There was significant correlation between the felt and enacted stigma scales among patients (Spearman's r = 0.892; p < 0.001) and within the community (Spearman's r = 0.794; p < 0.001). CONCLUSION: We report the development and testing of the first standardised measures of podoconiosis stigma. Although further research is needed to validate the scales in other contexts, we anticipate they will be useful in situational analysis and in designing, monitoring and evaluating interventions. The scales will enable an evidence-based approach to mitigating stigma which will enable implementation of more effective disease control and help break the cycle of poverty and NTDs.

Factors related to discontinued clinic attendance by patients with podoconiosis in southern Ethiopia: a qualitative study.

BACKGROUND: Podoconiosis is a lymphoedema of non-infectious cause which results in long-term ill health in affected individuals. Simple, effective treatment is available in certain parts of Ethiopia, but evidence indicates that not all patients continue collecting treatment supplies from clinic sites once started. We used qualitative techniques to explore factors related to discontinued attendance at outreach clinics of a non-government organization in southern Ethiopia. METHODS: A cross-sectional qualitative study was conducted in four clinic sites through unstructured in-depth interviews, key informant interviews and focus group discussions with the involvement of 88 study subjects. RESULTS: Discontinuation of clinic visits is common among podoconiosis patients. The reasons were: remoteness from the clinic sites, unrealistic expectation of 'special' aid, worry about increasing stigma, illness and misconceptions about treatment. CONCLUSIONS: Several of these factors are remediable through community and individual information and education. Appropriate routes to deliver this information must be identified. Certain factors (such as distance to clinic sites and stigma) require substantial expansion of services or liaison with village-level government health services.

The association of beliefs about heredity with preventive and interpersonal behaviors in communities affected by podoconiosis in rural Ethiopia.

Little is known about how beliefs about heredity as a cause of health conditions might influence preventive and interpersonal behaviors among those individuals with low genetic and health literacy. We explored causal beliefs about podoconiosis, a neglected tropical disease (NTD) endemic in Ethiopia. Podoconiosis clusters in families but can be prevented if individuals at genetically high risk wear shoes consistently. Adults (N = 242) from four rural Ethiopian communities participated in qualitative assessments of beliefs about the causes of podoconiosis. Heredity was commonly mentioned, with heredity being perceived as (1) the sole cause of podoconiosis, (2) not a causal factor, or (3) one of multiple causes. These beliefs influenced the perceived controllability of podoconiosis and in turn, whether individuals endorsed preventive and interpersonal stigmatizing behaviors. Culturally informed education programs that increase the perceived controllability of stigmatized hereditary health conditions like podoconiosis have promise for increasing preventive behaviors and reducing interpersonal stigma.

Health professionals' attitudes and misconceptions regarding podoconiosis: potential impact on integration of care in southern Ethiopia.

Offering long-term community care for patients with podoconiosis (endemic non-filarial elephantiasis) is challenging, and requires co-operation between patients and their families, the community and health care professionals. Health professionals who harbour misconceptions about podoconiosis or stigmatize patients are likely to deliver substandard services and propagate such attitudes within the community. In January 2007, we used a structured self-administered questionnaire to assess knowledge of and attitudes towards podoconiosis among 275 health professionals in public and private health institutions in southern Ethiopia. Nearly all (97.8%) health professionals held at least one significant misconception about the cause of podoconiosis, and 97.1% responded incorrectly to one or more questions about signs and symptoms of podoconiosis. Around half (53.9%) incorrectly considered podoconiosis to be an infectious disease and were afraid of acquiring podoconiosis while providing care. All (100%) held one or more stigmatizing attitudes towards people with podoconiosis. These high levels of misconceptions and stigmatizing attitudes suggest negative effects of health professionals, seriously undermining integration between themselves, patients and community partners. We recommend pre- and in-service training of health professionals to overcome these misconceptions, to diminish stigma and to improve integration among those offering community care of patients with podoconiosis.

Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study.

BACKGROUND: The consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Ethiopia because of the widely held opinion that the disease runs in families and is untreatable. The aim of this study was to explore the impact of social stigma on the process of obtaining consent for a study on the genetics of podoconiosis in Southern Ethiopia. METHODS: We adapted a rapid assessment tool validated in The Gambia. The methodology was qualitative involving focus-group discussions (n = 4) and in-depth interviews (n = 25) with community members, fieldworkers, researchers and staff of the Mossy Foot Treatment and Prevention Association (MFTPA) working on prevention and treatment of podoconiosis. RESULTS: We found that patients were afraid of participation in a genetic study for fear the study might aggravate stigmatization by publicizing the familial nature of the disease. The MFTPA was also concerned that discussion about the familial nature of podoconiosis would disappoint patients and would threaten the trust they have in the organization. In addition, participants of the rapid assessment stressed that the genetic study should be approved at family level before prospective participants are approached for consent. Based on this feedback, we developed and implemented a consent process involving community consensus and education of fieldworkers, community members and health workers. In addition, we utilized the experience and established trust of the MFTPA to diminish the perceived risk. CONCLUSION: The study showed that the consent process developed based on issues highlighted in the rapid assessment facilitated recruitment of participants and increased their confidence that the genetic research would not fuel stigma. Therefore, investigators must seek to assess and address risks of research from prospective participants' perspectives. This involves understanding the issues in the society, the culture, community dialogues and developing a consent process that takes all these into consideration.

High levels of misconceptions and stigma in a community highly endemic for podoconiosis in southern Ethiopia.

The impact of public health interventions for tropical diseases is limited by lack of understanding of the sociocultural context into which these interventions are delivered. Podoconiosis (endemic non-filarial elephantiasis) is a considerable public health problem in Ethiopia, yet little is known about community understanding of it. This study aimed to assess the knowledge, attitudes and practices of community members towards podoconiosis in a highly endemic area in southern Ethiopia. A cross-sectional study was conducted in January 2007 among 438 study participants selected by multistage probability sampling. Most respondents (93.5%) had seen a patient with podoconiosis and 91.6% had heard of the local terms for podoconiosis. The proportion of respondents holding at least one misconception about causation was 93.4% (95% CI 91.1-95.7%). More than one-half (55.8%) showed stigmatising attitudes towards social interactions with podoconiosis patients and 63.8% had unfavourable attitudes towards the condition. Just over one-half (55.2%) of respondents were wearing shoes during the interview, but shoe wearing was inconsistent and inadequate to prevent podoconiosis. In this highly endemic area, the community held significant misconceptions about causation, care, treatment and prevention of podoconiosis. Community interventions for podoconiosis must include education components aimed at dispelling misconceptions and stigma.

A survey of knowledge, attitudes, and perceptions (KAPs) of lymphatic filariasis, elephantiasis, and hydrocele among residents in an endemic area in Haiti.

To assess knowledge, attitudes, and perceptions about bancroftian filariasis, 104 residents of an endemic area in Haiti were interviewed. Questions focused on 1) whether people understood the relationship between infection and disease, 2) recognition of the role that mosquitoes play in transmission, 3) perceived importance of hydrocele and elephantiasis in relation to other recognized diseases, and 4) the willingness of the community to participate in a control program. Fewer than 50% of residents had heard of filariasis and only 6% of those surveyed knew that it was transmitted by mosquitoes. In contrast, all persons knew of the clinical conditions of hydrocele and elephantiasis. Hydrocele was thought to be caused by trauma (60%) or trapped gas (30%); elephantiasis by walking bare foot on soil or water (37%) or by use of ceremonial powder that had been sprinkled on the ground (23%). Of 76 respondents, 53% and 38% thought that hydrocele could be treated through surgery or a drug, respectively, whereas 86 respondents, 85% and 15% believed that either surgery or a drug could be used to treat elephantiasis. In this context, persons were not referring to a specific drug; rather, they believed a drug existed (possibly in some other country) that could cure these conditions. Hydrocele and elephantiasis ranked second to acquired immunodeficiency syndrome as perceived health problems, most likely because residents believed treatment for conditions such as malaria, intestinal worms, anemia, and diarrhea was easily obtained. Responses were influenced by age, sex, and symptoms, but none of these effects were statistically significant except that persons with hydrocele or elephantiasis were more likely to have sought treatment than persons without these conditions (P = 0.0006). The survey results indicate that awareness of the causes of disease, the relationship between infection and disease, and goals of treatment must be heightened through community-based education campaigns to increase the possibility of acceptance and support of control programs.