Nudge strategies for behavior-based prevention and control of neglected tropical diseases: A scoping review and ethical assessment.

BACKGROUND: Nudging, a strategy that uses subtle stimuli to direct people's behavior, has recently been included as an effective and low-cost behavior change strategy in low- and middle- income countries (LMIC), targeting behavior-based prevention and control of neglected tropical diseases (NTDs). The present scoping review aims to provide a timely overview of how nudge interventions have been applied within this field. In addition, the review proposes a framework for the ethical consideration of nudges for NTD prevention and control, or more broadly global health promotion. METHODS: A comprehensive search was performed in several databases: MEDLINE, PsycINFO, and Embase (Ovid), Web of Science Core Collection, CINAHL, ERIC and Econ.Lit (EBSCO), as well as registered trials and reviews in CENTRAL and PROSPERO to identify ongoing or unpublished studies. Additionally, studies were included through a handpicked search on websites of governmental nudge units and global health or development organizations. RESULTS: This scoping review identified 33 relevant studies, with only two studies targeting NTDs in particular, resulting in a total of 67 nudge strategies. Most nudges targeted handwashing behavior and were focused on general health practices rather than targeting a specific disease. The most common nudge strategies were those targeting decision assistance, such as facilitating commitment and reminder actions. The majority of nudges were of moderate to high ethical standards, with the highest standards being those that had the most immediate and significant health benefits, and those implemented by agents in a trust relationship with the target audience. CONCLUSION: Three key recommendations should inform research investigating nudge strategies in global health promotion in general. Firstly, future efforts should investigate the different opportunities that nudges present for targeting NTDs in particular, rather than relying solely on integrated health promotion approaches. Secondly, to apply robust study designs including rigorous process and impact evaluation which allow for a better understanding of 'what works' and 'how it works'. Finally, to consider the ethical implications of implementing nudge strategies, specifically in LMIC.

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 state utility values in people living with HTLV-1 and in patients with HAM/TSP: The impact of a neglected disease on the quality of life.

BACKGROUND: HTLV-1 is a neglected sexually transmitted infection despite being the cause of disabling neurological disease HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). There is no treatment for this infection and public health policies are essential to reduce its transmission. However, there are no data to support adequate cost-effective analysis in this field. The aim of this study was to obtain health state utility values for individuals with HAM/TSP and HTLV-1 asymptomatic carriers (AC). The impact of both states on quality of life (QoL) is described and compared to other diseases. METHODS: A cross-sectional observational study of 141 individuals infected with HTLV-1 (79 with HAM/TSP and 62 AC) from three Brazilian states (Rio de Janeiro, São Paulo and Alagoas) and from the United Kingdom. Participants completed a validated general health questionnaire (EQ-5D, Euroqol) from which country specific health state utility values are generated. Clinical and epidemiological data were collated. PRINCIPAL FINDINGS: Health state utility value for HAM/TSP was 0.2991. QoL for 130 reported clinical conditions ranges from 0.35 to 0.847. 12% reported their quality of life as worse as death. Low QoL was associated with severity rather than duration of disease with a moderate inverse correlation between QoL and Osame's Motor Disability Score (-0.4933) Patients who are wheelchair dependent had lowest QoL whilst those still walking unaided had the highest. AC also reported impaired QoL (0.7121) compared to general population. CONCLUSION: HTLV-1 and its associated neurological disease has a marked impact on QoL. This study provides robust data to support the development of cost-utility analysis of interventions for HTLV-1.

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.

Head lice infestations in rural Honduras: the need for an integrated approach to control neglected tropical diseases.

BACKGROUND: Pediculosis capitis is a neglected tropical disease (NTD) that receives little attention in countries where it continues to be endemic. This study aimed to understand the impact of Pediculus humanus capitis infestations in the lives of Honduran children living in extreme poverty. METHODS: A qualitative study on head lice infestation was conducted in June 2016 in a rural community in Honduras. Parents were invited to bring their children for head lice inspection using a dry-combing technique with a stainless steel-toothed comb with suction power. A semistructured questionnaire was administered to participants. Questions were broadly grouped into knowledge about transmission, control practices, barriers to treatment, and the overall impact of these infestations in children's wellbeing. Responses were coded, categorized, and organized through a theme-based approach. RESULTS: In total, 52 children aged 2-14 years (42 girls) and their mothers were enrolled in the study. The overall proportion of children with an infestation was 83%. Response analysis revealed a lack of understanding regarding lice transmission and stigmatization of infested children and the widespread belief that head lice were acquired during bathing in the slow-flowing river running through the village. An agricultural plaguicide was commonly used to rid children of head lice. CONCLUSIONS: The study underscores the dire situation of the rural poor, their physical and mental health affected by pediculosis capitis as well as other NTDs. These results highlight the need to reassess approaches and action towards combating NTDS under an integrated framework.

Social stigma towards neglected tropical diseases: a systematic review.

BACKGROUND: People affected by neglected tropical diseases (NTDs) are frequently the target of social stigmatization. To date not much attention has been given to stigma in relation to NTDs. The objective of this review is to identify the extent of social stigma and the similarities and differences in the causes, manifestations, impact of stigma and interventions used between the NTDs. METHODS: A systematic review was conducted in Pubmed, ScienceDirect, PsycINFO and Web of Knowledge. The search encompassed 17 NTDs, including podoconiosis, but not leprosy as this NTD has recently been reviewed. However, leprosy was included in the discussion. RESULTS: The 52 selected articles provided evidence on stigma related to lymphatic filariasis (LF), podoconiosis, Buruli ulcer, onchocerciasis, schistosomiasis, leishmaniasis, Chagas disease, trachoma, soil-transmitted helminthiasis (STH) and human African trypanosomiasis. The similarities predominated in stigma related to the various NTDs; only minimal differences in stigma reasons and measures were found. CONCLUSION: These similarities suggest that joint approaches to reduce stigmatization may be feasible. Lessons from leprosy and other stigmatized health conditions can be used to plan such joint approaches. Further research will be necessary to study the efficacy of joint interventions and to investigate stigma related to NTDs for which no evidence is available yet.

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.

Evaluation of suffering in individuals with multiple chemical sensitivity / Evaluation of suffering in individuals with multiple chemical sensitivity

Qualitative studies show that patients suffering from Multiple Chemical Sensitivity (MCS) or Idiopathic Environmental Intolerance (IEI) are aware of health-care professionals' non-awareness of the disease, making communication difficult. The objective of this paper is to describe the suffering in individuals with MCS and to assess the disease's impact on each measured dimension of suffering by means of a descriptive and correlational study. A sample of 125 subjects fill out a survey consisting of three scales for assessing the impact of MCS and three scales for assessing suffering. The results show that MCS affects mostly women. Assessment with the Quick Environmental Exposure and Sensitivity Inventory (QEESI) showed that participants have high levels of disease. The physical sphere of suffering is the most affected, followed by the psychological and the existential. There are high correlations between the QEESI and suffering scales. A multivariate regression equation explained 38.2% of the variance of suffering observed. We conclude that MCS generates physical, psychological, and existential suffering. Severity of symptoms is the variable that generates most suffering, followed by life impact. Psychological distress is marked by anxiety or worry and lack of gaiety; existential suffering reveals thoughts of failure and lack of inner harmony. A detailed description of suffering in MCS is a useful basis for therapy. Lack of awareness among health-care personnel implies inattention of these patients within the general health-care service. With this investigation we hope to raise awareness of this emerging disease in order to improve the communication between health-care workers and patients

Los estudios cualitativos muestran que las personas que padecen sensibilidad química múltiple (SQM), o intolerancia ambiental idiopática, piensan que existe una falta de conciencia por parte de los profesionales sanitarios acerca de la enfermedad, lo que dificulta la comunicación. El objetivo de este trabajo es describir el sufrimiento de las personas que padecen SQM y evaluar la repercusión de la enfermedad en cada dimensión del sufrimiento, mediante un estudio descriptivo y correlacional. Una muestra compuesta por 125 personas cumplimentaron una encuesta de tres escalas que miden el impacto de la SQM y tres escalas que miden el sufrimiento. Los resultados revelan que la SQM afecta sobre todo a mujeres. La evaluación mediante el Inventario Rápido de Exposición y Sensibilidad al Entorno (QEESI) mostró que los participantes padecían la enfermedad en grado elevado. La esfera física del sufrimiento es la más afectada, seguida de la psicológica y la existencial. La correlación entre el QUEESI y las escalas de sufrimiento es elevada. La ecuación de regresión multivariada explicaba el 38.2% de la varianza del sufrimiento observada. Se concluye que la SQM produce sufrimiento físico, psicológico y existencial. La gravedad de los síntomas es las variable que más sufrimiento produce, seguido de la repercusión vital. El sufrimiento psicológico se caracteriza por la ansiedad o la preocupación y la falta de alegría. El sufrimiento existencial revela pensamientos de fracaso y falta de armonía interior. La detallada descripción del sufrimiento en la SQM constituye una base útil para la terapia. La carencia de conocimiento entre los profesionales sanitarios provoca falta de atención a estos pacientes por parte de los profesionales sanitarios. Esperamos con esta investigación inducir la toma de conciencia sobre esta enfermedad emergente para así poder mejorar la comunicación entre el personal sanitario y los pacientes

Leprosy as a neglected disease and its stigma in the northeast of Brazil.

Hansen's disease is an infectious and degenerative chronic disease with a high potential for incapacitation. Due to the explosive epidemic of leprosy cases worldwide (especially in Brazil), the social difficulties faced by these patients are an important subject for research. This work aimed to identify the stigma experienced by these patients. The qualitative research for this study was completed at the National Reference Centre in Dermatology in Fortaleza. The study took place in northeast Brazil from September 2010 to November 2012. The research subjects included 20 people with Hansen's disease of both sexes between 20 and 70 years old. The data collection consisted of a semi-structured interview. From the discourse analysis of the participants, several changes experienced by persons affected by leprosy were noted from the empiric categories emerged. Changes occurred in the family, the receptiveness of neighbours and co-workers and the patients' social lives were experienced by the persons affected after the diagnosis of Hansen's disease. From the data obtained, it was concluded that the patients are stigmatised. Sometimes they are forced to hide from relatives, friends, neighbours and co-workers. Despite their social exclusion, they believe their isolation is justified. Leprosy is a chronic, degenerative and curable infectious illness that continues to be a serious public health problem, mainly in the poorest region of Brazil.

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.

Assessment of the quality of life of patients with cutaneous leishmaniasis in Belo Horizonte, Brazil, 2009-2010. A pilot study.

BACKGROUND: Cutaneous leishmaniasis (CL) may manifest as single or multiple skin lesions, causing significant aesthetic impact and affecting the patient's quality of life (QoL). The objective of this study was to assess the impact of CL on the QoL. METHODS: The QoL of 20 patients with CL was assessed by the Dermatology Life Quality Index (DLQI). RESULTS: For 70% of patients CL had a moderate/large impact on their QoL, with 'Work and School' being the most affected domain. This is the first study to use the DLQI to assess the impact of CL. CONCLUSION: CL has a moderate to large negative effect on QoL.