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"Buruli ulcer and leprosy, they are intertwined": Patient experiences of integrated case management of skin neglected tropical diseases in Liberia.

ABSTRACT: BACKGROUND:Skin neglected tropical diseases (NTDs) such as Buruli ulcer (BU) and leprosy produce significant stigma and disability. Shared clinical presentations and needs for care present opportunities for integrated case management in co-endemic areas. As global policies are translated into local integrated services, there remains a need to monitor what new configurations of care emerge and how individuals experience them. METHODS:To explore patient experiences of integrated case management for skin NTDs, in 2018, we conducted a field-based qualitative case series in a leprosy rehabilitation centre in Ganta, Liberia where BU services were recently introduced. Twenty patients with BU (n = 10) and leprosy (n = 10) participated in in-depth interviews that incorporated photography methods. We contextualised our findings with field observations and unstructured interviews with health workers. FINDINGS:The integration of care for BU and leprosy prompted new conceptualisations of these diseases and experiences of NTD stigma. Some patients felt anxiety about using services because they feared being infected with the other disease. Other patients viewed the two diseases as 'intertwined': related manifestations of the same condition. Configurations of inter-disease stigma due to fear of transmission were buffered by joint health education sessions which also appeared to facilitate social support between patients in the facility. For both diseases, medication and wound care were viewed as the cornerstones of care and appreciated as interventions that led to rehabilitation of the whole patient group through shared experiences of healing, avoidance of physical deformities and stigma reduction. Patient accounts of intense pain during wound care for BU and inability of staff to manage severe complications, however, exposed some shortcomings of medical care for the newly integrated service, as did patient fears of long-lasting disability due to lack of physiotherapy services. SIGNIFICANCE:Under integrated care policies, the possibility of new discourses about skin NTD identities emerging along with new configurations of stigma may have unanticipated consequences for patients' experiences of case management. The social experience of integrated medication and wound dressing has the potential to link patients within a single, supportive patient community. Control programmes with resource constraints should anticipate potential challenges of integrating care, including the need to ameliorate lasting disability and provide adequate clinical management of severe BU cases.

SUBMITTER: Prochazka M

PROVIDER: S-EPMC7001903 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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"Buruli ulcer and leprosy, they are intertwined": Patient experiences of integrated case management of skin neglected tropical diseases in Liberia.

Prochazka Mateo M Timothy Joseph J Pullan Rachel R Kollie Karsor K Rogers Emerson E Wright Abednego A Palmer Jennifer J

PLoS neglected tropical diseases 20200205 2

<h4>Background</h4>Skin neglected tropical diseases (NTDs) such as Buruli ulcer (BU) and leprosy produce significant stigma and disability. Shared clinical presentations and needs for care present opportunities for integrated case management in co-endemic areas. As global policies are translated into local integrated services, there remains a need to monitor what new configurations of care emerge and how individuals experience them.<h4>Methods</h4>To explore patient experiences of integrated cas ...[more]

PMID: 32023242

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Project description:BackgroundNeglected Tropical Diseases (NTDs) are a group of several communicable diseases prevalent in the tropical and subtropical areas. The co-endemicity of these diseases, the similarity of the clinical signs, and need to maximize limited financial and human resources have necessitated implementation of integrated approach. Our study aims to share the lessons of this integrated approach in the fight against Buruli ulcer (BU), leprosy and yaws in a rural district in Benin.MethodsIt is a cross-sectional study using a single set of activities data conducted from May 2016 to December 2016. Health workers and community health volunteers involved in this study were trained on integrated approach of the Buruli ulcer, leprosy and yaws. Village chiefs were briefed about the activity. The trained team visited the villages and schools in the district of Lalo in Benin. After the education and awareness raising sessions, all persons with a skin lesion who presented voluntarily to the team were carefully examined in a well-lit area which respected their privacy. Suspected cases were tested as needed. The socio-demographic information and the characteristics of the lesions were collected using a form. A descriptive analysis of the epidemiological, clinical and laboratory variables of the cases was made using Excel 2013 and SPSS version 22.00.Principal findingsIn the study period, 1106 people were examined. The median (IQR) age of those examined was 11 (8; 27) years. Of 34 (3.1%) suspected BU cases, 15 (1.4%) were confirmed by PCR. Only three cases of leprosy were confirmed. The 185 (16.7%) suspected cases of yaws were all negative with the rapid test. The majority of cases were other skin conditions, including fungal infections, eczema and traumatic lesions.ConclusionThe integrated approach of skin NTD allows optimal use of resources and surveillance of these diseases. Sustaining this skin NTD integrated control will require the training of peripheral health workers not only on skin NTD but also on basic dermatology.

Project description:BackgroundNeglected tropical diseases (NTDs) represent a diverse group of 20 communicable diseases that occur in tropical and subtropical areas in 149 countries, affecting over 1 billion people and costing developing economies billions of dollars every year. Within these diseases, those that present lesions on the skin surface are classified as skin NTDs (sNTDs). Mobile health interventions are currently being used worldwide to manage skin diseases and can be a good strategy in the epidemiological and clinical management of sNTDs.ObjectiveWe aimed to analyze existing evidence about mobile health interventions to control and manage sNTDs in low- and middle-income countries (LMICs) and make recommendations for what should be considered in future interventions.MethodsA systematic review was conducted of the MEDLINE, Embase, and Scopus databases over 10 years up to April 30, 2020. All types of clinical studies were considered. Data were synthesized into evidence tables. Apps were selected through a comprehensive systematic search in the Google Play Store and Apple App Store conducted between March 20 and April 15, 2020.ResultsFrom 133 potentially relevant publications, 13 studies met our criteria (9.8%). These analyzed eight different interventions (three SMS text messaging interventions and five app interventions). Six of the 13 (46%) studies were community-based cross-sectional studies intended to epidemiologically map a specific disease, mainly lymphatic filariasis, but also cutaneous leishmaniasis, leprosy, and NTDs, as well as sNTDs in general. Most of the studies were considered to have a high (5/13, 39%) or moderate (4/13, 31%) risk of bias. Fifteen apps were identified in the Google Play Store, of which three were also in the Apple App Store. Most of the apps (11/15, 73%) were targeted at health care professionals, with only four targeted at patients. The apps focused on scabies (3/15, 20%), lymphatic filariasis (3/15, 20%), cutaneous leishmaniasis (1/15, 7%), leprosy (1/15, 7%), yaws and Buruli ulcer (1/15, 7%), tropical diseases including more than one sNTDs (3/15, 20%), and NTDs including sNTDs (2/15, 13%). Only 1 (7%) app focused on the clinical management of sNTDs.ConclusionsAll mobile health interventions that were identified face technological, legal, final user, and organizational issues. There was a remarkable heterogeneity among studies, and the majority had methodological limitations that leave considerable room for improvement. Based on existing evidence, eight recommendations have been made for future interventions.

Project description: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.

Project description:Neglected Tropical Diseases (NTDs) are a group of chronic infectious diseases of poverty affecting over one billion people globally. Intersections of NTDs, disability, and mental ill-health are increasingly evidenced but are rarely studied from a mixed-methods perspective. Here, we advance syndemic understandings by further assessing and contextualising the syndemic relationship between NTDs (particularly their associated disability) and mental distress in Liberia. Participatory qualitative methods, including body mapping (56 participants), social mapping (28 participants), and in-depth interviews (12) provided space for persons affected by NTDs to narrate their experiences. Simultaneously, 201 surveys explored experiences of common mental health conditions among persons affected by skin NTDs. An intersectionality approach was applied within the analysis for both qualitative and quantitative methods informed by Meyer's minority stress model, adapted for NTDs. Qualitative data was analysed thematically and gender-disaggregated, univariable and multivariable analyses were applied to survey data for the outcome measures depression (PHQ-9) and anxiety (GAD-7). Disability was associated with higher levels of depression and anxiety (p < 0.001). An interaction between disability and being a women increased incidence risk ratio of depression (p < 0.001). In alignment with qualitative findings, persons affected experienced additional generalised (financial concerns), external (experience of stigma) and internal (experience of pain and physical symptoms) minority stressors, to varying degrees, which contributed towards their mental distress, and mental health conditions. These findings were used to co-develop a syndemic-informed person-centred health system response to address the suffering associated with NTDs and mental distress, including a focus on strengthening relationships between formal and informal community health actors and the broader health system.

Project description:BackgroundLymphatic filariasis (LF), Buruli ulcer (BU) and leprosy are neglected tropical diseases (NTDs) of the skin co-endemic in some communities in Nigeria. Not enough is known about the effectiveness of integrated morbidity management and disability prevention in people with these conditions. An integrated self-care intervention was carried out for people with these skin NTDs in two endemic communities of Anambra state, Nigeria. The objective of the study was to assess the effectiveness of self-care practices on costs of care, disability status and health-related quality of life.MethodsThis study utilised a quasi-experimental pre-test/post-test design to assess the effectiveness of the self-care interventions for people affected by NTDs to care for these impairments at home. Data were collected using questionnaires administered at the beginning and at the end of the intervention on monthly cost of morbidity care, and on participants' disability status and their quality of life (QoL). Focus group discussions (FGDs) were held with both the participants and healthcare workers at follow-up.ResultsForty-eight participants were recruited. Thirty participants (62.5%) continued the self-care interventions until the end of the project. Of those, 25 (83%) demonstrated improvement from their baseline impairment status. The mean household costs of morbidity care per participant decreased by 66% after the intervention, falling from US$157.50 at baseline to US$53.24 after 6 months of self-care (p = 0.004). The mean disability score at baseline was 22.3; this decreased to 12.5 after 6 months of self-care (p < 0.001). Among the 30 participants who continued the interventions until the end of the project, 26 (86.7%) had severe disability score (i.e. a score of 10-46) at baseline, and the number with severe disability fell to 18 (60%) of the 30 after the intervention. The mean QoL score increased from 45.7 at baseline to 57.5 at the end of the intervention (p = 0.004).ConclusionsThe 6-month self-care intervention for participants affected by BU, leprosy, or LF led to lower costs of care (including out-of-pocket costs and lost earnings due to morbidity), improved QoL scores, and reduced disability status.Trial registrationISRCTN Registry: ISRCTN20317241 ; 27/08/2021, Retrospectively registered.

Dataset Information

"Buruli ulcer and leprosy, they are intertwined": Patient experiences of integrated case management of skin neglected tropical diseases in Liberia.

Publications

"Buruli ulcer and leprosy, they are intertwined": Patient experiences of integrated case management of skin neglected tropical diseases in Liberia.

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