Journal Article > ResearchFull Text
Oxford Medical Journal. 6 November 2024; Online ahead of print; DOI:10.1093/inthealth/ihae066
Harrison RE, Shyleika V, Vishneuski R, Leonovich O, Vetushko D, et al.
Oxford Medical Journal. 6 November 2024; Online ahead of print; DOI:10.1093/inthealth/ihae066
BACKGROUND
TB is concentrated in populations with complex health and social issues, including alcohol use disorders (AUD). We describe treatment adherence and outcomes in a person-centred, multidisciplinary, psychosocial support and harm reduction intervention for people with multidrug-resistant or rifampicin-resistant TB (MDR/RR-TB) with harmful alcohol use.
METHODS
An observational cohort study, including multilevel mixed-effects logistic regression and survival analysis with people living in Minsk admitted with MDR/RR-TB and AUD during January 2019–November 2021 who received this person-centred, multidisciplinary, psychosocial support and harm reduction intervention, was conducted.
RESULTS
There were 89 participants enrolled in the intervention, with a median follow-up of 12.2 (IQR: 8.1–20.5) mo. The majority (n=80; 89.9%) of participants had AUD, 11 (12.4%) also had a dependence on other substances, six (6.7%) a dependence on opioids and three (3.4%) a personality disorder. Fifty-eight had a history of past incarceration (65.2%), homelessness (n=9; 10.1%) or unemployment (n=55; 61.8%). Median adherence was 95.4% (IQR: 90.4–99.6%) and outpatient adherence was 91.2% (IQR: 65.1–97.0%). Lower adherence was associated with hepatitis C, alcohol plus other substance use and outpatient facility-based treatment, rather than video-observed treatment, home-based or inpatient treatment support.
CONCLUSIONS
This intervention led to good adherence to MDR/RR-TB treatment in people with harmful use of alcohol, a group usually at risk of poor outcomes. Poor outcomes were associated with hepatitis C, other substance misuse and outpatient facility-based treatment support.
Journal Article > ResearchFull Text
Confl Health. 30 January 2024; Volume 18 (Issue 1); 13.; DOI:10.1186/s13031-024-00571-y
Baertlein L, Dubad BA, Sahelie B, Damulak IC, Osman M, et al.
Confl Health. 30 January 2024; Volume 18 (Issue 1); 13.; DOI:10.1186/s13031-024-00571-y
BACKGROUND
This study evaluated an early warning, alert and response system for a crisis-affected population in Doolo zone, Somali Region, Ethiopia, in 2019–2021, with a history of epidemics of outbreak-prone diseases. To adequately cover an area populated by a semi-nomadic pastoralist, or livestock herding, population with sparse access to healthcare facilities, the surveillance system included four components: health facility indicator-based surveillance, community indicator- and event-based surveillance, and alerts from other actors in the area. This evaluation described the usefulness, acceptability, completeness, timeliness, positive predictive value, and representativeness of these components.
METHODS
We carried out a mixed-methods study retrospectively analysing data from the surveillance system February 2019–January 2021 along with key informant interviews with system implementers, and focus group discussions with local communities. Transcripts were analyzed using a mixed deductive and inductive approach. Surveillance quality indicators assessed included completeness, timeliness, and positive predictive value, among others.
RESULTS
1010 signals were analysed; these resulted in 168 verified events, 58 alerts, and 29 responses. Most of the alerts (46/58) and responses (22/29) were initiated through the community event-based branch of the surveillance system. In comparison, one alert and one response was initiated via the community indicator-based branch. Positive predictive value of signals received was about 6%. About 80% of signals were verified within 24 h of reports, and 40% were risk assessed within 48 h. System responses included new mobile clinic sites, measles vaccination catch-ups, and water and sanitation-related interventions. Focus group discussions emphasized that responses generated were an expected return by participant communities for their role in data collection and reporting. Participant communities found the system acceptable when it led to the responses they expected. Some event types, such as those around animal health, led to the community’s response expectations not being met.
CONCLUSIONS
Event-based surveillance can produce useful data for localized public health action for pastoralist populations. Improvements could include greater community involvement in the system design and potentially incorporating One Health approaches.
This study evaluated an early warning, alert and response system for a crisis-affected population in Doolo zone, Somali Region, Ethiopia, in 2019–2021, with a history of epidemics of outbreak-prone diseases. To adequately cover an area populated by a semi-nomadic pastoralist, or livestock herding, population with sparse access to healthcare facilities, the surveillance system included four components: health facility indicator-based surveillance, community indicator- and event-based surveillance, and alerts from other actors in the area. This evaluation described the usefulness, acceptability, completeness, timeliness, positive predictive value, and representativeness of these components.
METHODS
We carried out a mixed-methods study retrospectively analysing data from the surveillance system February 2019–January 2021 along with key informant interviews with system implementers, and focus group discussions with local communities. Transcripts were analyzed using a mixed deductive and inductive approach. Surveillance quality indicators assessed included completeness, timeliness, and positive predictive value, among others.
RESULTS
1010 signals were analysed; these resulted in 168 verified events, 58 alerts, and 29 responses. Most of the alerts (46/58) and responses (22/29) were initiated through the community event-based branch of the surveillance system. In comparison, one alert and one response was initiated via the community indicator-based branch. Positive predictive value of signals received was about 6%. About 80% of signals were verified within 24 h of reports, and 40% were risk assessed within 48 h. System responses included new mobile clinic sites, measles vaccination catch-ups, and water and sanitation-related interventions. Focus group discussions emphasized that responses generated were an expected return by participant communities for their role in data collection and reporting. Participant communities found the system acceptable when it led to the responses they expected. Some event types, such as those around animal health, led to the community’s response expectations not being met.
CONCLUSIONS
Event-based surveillance can produce useful data for localized public health action for pastoralist populations. Improvements could include greater community involvement in the system design and potentially incorporating One Health approaches.
Conference Material > Slide Presentation
Stringer B, Lowton K, Cusinato M, Fielding K, Liverko I, et al.
MSF Scientific Day International 2023. 7 June 2023; DOI:10.57740/by3w-4h53
Conference Material > Video
Stringer B
MSF Scientific Day International 2023. 7 June 2023; DOI:10.57740/gpb9-ds36
Conference Material > Abstract
Stringer B, Lowton K, Cusinato M, Fielding K, Liverko I, et al.
MSF Scientific Day International 2023. 7 June 2023; DOI:10.57740/0589-cg13
INTRODUCTION
The TB-PRACTECAL study trialed a shorter, more tolerable regimen of oral drugs than standard of care (SoC) – which can last for up to 20 months and involve both injectables and up to 20 tablets a day. In this sub-study, PRACTECAL-PRO, we measured and explored trial participant quality of life, experiences, and perspectives on treatment, to understand outcomes more fully. Both studies were conducted in Uzbekistan, South Africa, and Belarus.
METHODS
We conducted a mixed-methods evaluation using quality of life (QoL) surveys and in-depth interviews. Participants in investigational and SoC arms completed the Short Form 12 (SF-12) and St George’s Respiratory Questionnaire (SGRQ) at four timepoints (baseline, 12, 24, and 48 weeks). Healthy age- and sex-matched volunteers were surveyed at a single timepoint to establish locally relevant controls. Participants from investigational arms were purposively sampled for in-depth interviews to describe qualitatively patient satisfaction and experience with the investigational arm trial, including factors enabling toleration or rejection of a novel treatment by patients.
ETHICS
This study was approved by the MSF Ethics Review Board and by the ethics review committees of the Ministry of Health of the Republic of Uzbekistan; the Republican Scientific and Practical Centre for Pulmonology and Tuberculosis, Belarus; the regulatory authority of the Ministry of Health of the Republic of Belarus and Pharma Ethics Independent Ethics Committee, South Africa.
RESULTS
Overall, of 137 trial participants 28.5% (39) and 71.5% (98) were randomised to the SoC arm and one of three investigational arms, respectively. Statistically significant univariate scores by arm were observed at week 48 for SGRQ Impact domain (median -3.8, 95% confidence interval (CI), -5.7 to 0.0) and at week 24 for SF-12 physical component score (median 3.1, 95%CI 0.2 to 6.7). Longitudinal analysis showed that the proportional reduction in SGRQ scores per month was higher in the investigational group compared to the SoC for all domains and the total score. For both the SGRQ and SF-12, baseline scores indicated worse quality of life for the trial participant group (that is, investigational arms and SoC together) than for the healthy control group. Qualitative analysis showed early treatment satisfaction was a useful predictor of better adherence. Treatment acceptability was linked to participants’ support networks and their experience of counselling and clinical advice. Tolerability of the regimen helped reassure patients and household members on efficacy and value of the treatment. Participants reported that early improvement helped them return to productive lives sooner, with the potential to address social determinants with financial protection schemes for a shorter investment period. Patient perspectives around residual burden of disease can help inform clinicians about ongoing care.
CONCLUSION
All PRACTECAL-PRO participants reported worse generic and disease-specific QoL at baseline, compared to an age and sex-matched healthy control group. Participants taking a novel shortened oral regimens demonstrated both a quicker improvement in their respiratory disease-specific QoL over 48 weeks than those receiving SoC, and an improvement that exceeded the SGRQ’s minimum clinically important difference. In-depth interviews give insights suggesting investment toward patient-sensitive and socially responsive treatment and care. For interviewees, the supportive care experienced was as important as their satisfaction and tolerability of the novel drug regimen. Patient perspectives are an essential component of assessing clinical trial outcomes.
CONFLCITS OF INTEREST
None declared.
The TB-PRACTECAL study trialed a shorter, more tolerable regimen of oral drugs than standard of care (SoC) – which can last for up to 20 months and involve both injectables and up to 20 tablets a day. In this sub-study, PRACTECAL-PRO, we measured and explored trial participant quality of life, experiences, and perspectives on treatment, to understand outcomes more fully. Both studies were conducted in Uzbekistan, South Africa, and Belarus.
METHODS
We conducted a mixed-methods evaluation using quality of life (QoL) surveys and in-depth interviews. Participants in investigational and SoC arms completed the Short Form 12 (SF-12) and St George’s Respiratory Questionnaire (SGRQ) at four timepoints (baseline, 12, 24, and 48 weeks). Healthy age- and sex-matched volunteers were surveyed at a single timepoint to establish locally relevant controls. Participants from investigational arms were purposively sampled for in-depth interviews to describe qualitatively patient satisfaction and experience with the investigational arm trial, including factors enabling toleration or rejection of a novel treatment by patients.
ETHICS
This study was approved by the MSF Ethics Review Board and by the ethics review committees of the Ministry of Health of the Republic of Uzbekistan; the Republican Scientific and Practical Centre for Pulmonology and Tuberculosis, Belarus; the regulatory authority of the Ministry of Health of the Republic of Belarus and Pharma Ethics Independent Ethics Committee, South Africa.
RESULTS
Overall, of 137 trial participants 28.5% (39) and 71.5% (98) were randomised to the SoC arm and one of three investigational arms, respectively. Statistically significant univariate scores by arm were observed at week 48 for SGRQ Impact domain (median -3.8, 95% confidence interval (CI), -5.7 to 0.0) and at week 24 for SF-12 physical component score (median 3.1, 95%CI 0.2 to 6.7). Longitudinal analysis showed that the proportional reduction in SGRQ scores per month was higher in the investigational group compared to the SoC for all domains and the total score. For both the SGRQ and SF-12, baseline scores indicated worse quality of life for the trial participant group (that is, investigational arms and SoC together) than for the healthy control group. Qualitative analysis showed early treatment satisfaction was a useful predictor of better adherence. Treatment acceptability was linked to participants’ support networks and their experience of counselling and clinical advice. Tolerability of the regimen helped reassure patients and household members on efficacy and value of the treatment. Participants reported that early improvement helped them return to productive lives sooner, with the potential to address social determinants with financial protection schemes for a shorter investment period. Patient perspectives around residual burden of disease can help inform clinicians about ongoing care.
CONCLUSION
All PRACTECAL-PRO participants reported worse generic and disease-specific QoL at baseline, compared to an age and sex-matched healthy control group. Participants taking a novel shortened oral regimens demonstrated both a quicker improvement in their respiratory disease-specific QoL over 48 weeks than those receiving SoC, and an improvement that exceeded the SGRQ’s minimum clinically important difference. In-depth interviews give insights suggesting investment toward patient-sensitive and socially responsive treatment and care. For interviewees, the supportive care experienced was as important as their satisfaction and tolerability of the novel drug regimen. Patient perspectives are an essential component of assessing clinical trial outcomes.
CONFLCITS OF INTEREST
None declared.
Journal Article > ResearchFull Text
PLOS One. 24 September 2014; Volume 9 (Issue 9); DOI:10.1371/journal.pone.0108591
Horter SCB, Stringer B, Venis S, du Cros PAK
PLOS One. 24 September 2014; Volume 9 (Issue 9); DOI:10.1371/journal.pone.0108591
In 2011, Médecins Sans Frontières (MSF) established a blogging project, "TB&Me," to enable patients with multidrug-resistant tuberculosis (MDR-TB) to share their experiences. By September 2012, 13 MDR-TB patients had blogged, either directly or with assistance, from the UK, Australia, Philippines, Swaziland, Central African Republic, Uganda, South Africa, India, and Armenia. Due to the lack of research on the potential for social media to support MDR-TB treatment and the innovative nature of the blog, we decided to conduct a qualitative study to examine patient and staff experiences. Our aim was to identify potential risks and benefits associated with blogging to enable us to determine whether social media had a role to play in supporting patients with MDR-TB.
Conference Material > Abstract
Croft LA, Puig-García M, Silver C, Pearlman J, Stellmach DUS, et al.
MSF Scientific Days International 2022. 9 May 2022; DOI:10.57740/b641-d608
INTRODUCTION
Between 2020 and 2021, MSF’s social sciences team designed and supported implementation of qualitative assessments to better understand community-level outbreak responses and well-being in the context of Covid-19. Assessments were conducted in seven sites, specifically Nigeria, Sierra Leone, Chad, Iraq, Tajikistan, Syria, and Somaliland. Although a single protocol was designed and followed, each site was unique in terms of its setting (e.g. camp, conflict, urban, or rural), who implemented assessments (e.g. field epidemiologists, health promotion staff), timing of implementation (early phase of the pandemic versus late phase), and community involvement. Here we present a synthesis of the assessments to inform future public health responses.
METHODS
Synthesis involved secondary analysis of qualitative reports over five iterative phases. Phase 1 involved in-depth reading of each report, during which analytic annotation and note-taking took place. In Phase 2, each report was coded inductively. In Phase 3, codes were reviewed, defined, and clustered into initial categories and themes. Phase 4 involved reviewing and refining codes, categories, and themes, and establishing connections. In Phase 5, synthesis findings were organised and written up. The process was managed using the software ATLAS.ti.
ETHICS
This synthesis is an a posteriori analysis of secondary data. Ethics approval for primary data was granted by officials in Nigeria, Sierra Leone, Chad, Iraq, Tajikistan, Syria, and Somaliland and the MSF Ethics Review Board.
RESULTS
Overall 138, people participated in the assessments, of which 21 (15%) were women. Participants included health workers, community members, traditional healers, chiefs, young people, women’s leaders and local staff. Four themes were identified: 1) exacerbation of pre-existing vulnerabilities and inequalities; 2) disruption of coping mechanisms; 3) awareness of the risks of Covid-19; 4) community as a public health enabler. The pandemic was seen to magnify existing social inequalities and overall health burden. Public health measures to control the spread of Covid-19 often disrupted community coping mechanisms by causing fear of separation and practical challenges around compliance. Awareness of the risks of Covid-19 and understanding of prevention measures were high, with socio-economic costs of compliance relying on external funding and relief. A community led intervention for effective public health controls varied between sites, depending on previous outbreak experiences (e.g. Ebola and tuberculosis), and/or settings experiencing protracted conflict (e.g. Syria, and Iraq).
CONCLUSION
Our synthesis illustrates syndemic effects of the pandemic. From an operational perspective, there is a need to diversify humanitarian, social, and health interventions, and strengthen approaches to working with communities to identify how best to take forward public health measures in humanitarian settings.
CONFLICTS OF INTEREST
None declared.
Between 2020 and 2021, MSF’s social sciences team designed and supported implementation of qualitative assessments to better understand community-level outbreak responses and well-being in the context of Covid-19. Assessments were conducted in seven sites, specifically Nigeria, Sierra Leone, Chad, Iraq, Tajikistan, Syria, and Somaliland. Although a single protocol was designed and followed, each site was unique in terms of its setting (e.g. camp, conflict, urban, or rural), who implemented assessments (e.g. field epidemiologists, health promotion staff), timing of implementation (early phase of the pandemic versus late phase), and community involvement. Here we present a synthesis of the assessments to inform future public health responses.
METHODS
Synthesis involved secondary analysis of qualitative reports over five iterative phases. Phase 1 involved in-depth reading of each report, during which analytic annotation and note-taking took place. In Phase 2, each report was coded inductively. In Phase 3, codes were reviewed, defined, and clustered into initial categories and themes. Phase 4 involved reviewing and refining codes, categories, and themes, and establishing connections. In Phase 5, synthesis findings were organised and written up. The process was managed using the software ATLAS.ti.
ETHICS
This synthesis is an a posteriori analysis of secondary data. Ethics approval for primary data was granted by officials in Nigeria, Sierra Leone, Chad, Iraq, Tajikistan, Syria, and Somaliland and the MSF Ethics Review Board.
RESULTS
Overall 138, people participated in the assessments, of which 21 (15%) were women. Participants included health workers, community members, traditional healers, chiefs, young people, women’s leaders and local staff. Four themes were identified: 1) exacerbation of pre-existing vulnerabilities and inequalities; 2) disruption of coping mechanisms; 3) awareness of the risks of Covid-19; 4) community as a public health enabler. The pandemic was seen to magnify existing social inequalities and overall health burden. Public health measures to control the spread of Covid-19 often disrupted community coping mechanisms by causing fear of separation and practical challenges around compliance. Awareness of the risks of Covid-19 and understanding of prevention measures were high, with socio-economic costs of compliance relying on external funding and relief. A community led intervention for effective public health controls varied between sites, depending on previous outbreak experiences (e.g. Ebola and tuberculosis), and/or settings experiencing protracted conflict (e.g. Syria, and Iraq).
CONCLUSION
Our synthesis illustrates syndemic effects of the pandemic. From an operational perspective, there is a need to diversify humanitarian, social, and health interventions, and strengthen approaches to working with communities to identify how best to take forward public health measures in humanitarian settings.
CONFLICTS OF INTEREST
None declared.
Conference Material > Slide Presentation
Ali Dubad B, Baertlein L, Piening T, Chindong I, Sahelie B, et al.
MSF Scientific Days International 2022. 12 May 2022; DOI:10.57740/8bp2-4234
Journal Article > ResearchFull Text
Trials. 4 December 2021; Volume 22; 881 .; DOI:10.1186/s13063-021-05850-0
Wharton-Smith A, Horter SCB, Douch E, Gray NSB, James N, et al.
Trials. 4 December 2021; Volume 22; 881 .; DOI:10.1186/s13063-021-05850-0
BACKGROUND
Addressing the global burden of multidrug-resistant tuberculosis (MDR-TB) requires identification of shorter, less toxic treatment regimens. Médecins Sans Frontières (MSF) is currently conducting a phase II/III randomised controlled clinical trial, to find more effective, shorter and tolerable treatments for people with MDR-TB. Recruitment to the trial in Uzbekistan has been slower than expected; we aimed to study patient and health worker experiences of the trial, examining potential factors perceived to impede and facilitate trial recruitment, as well as general perceptions of clinical research in this context.
METHODS
We conducted a qualitative study using maximum variation, purposive sampling of participants. We carried out in-depth interviews (IDIs) and focus group discussions (FGDs) guided by semi-structured topic guides. In December 2019 and January 2020, 26 interviews were conducted with patients, Ministry of Health (MoH) and MSF staff and trial health workers, to explore challenges and barriers to patient recruitment as well as perceptions of the trial and research in general. Preliminary findings from the interviews informed three subsequent focus group discussions held with patients, nurses and counsellors. Focus groups adopted a person-centred design, brainstorming potential solutions to problems and barriers. Interviews and FGDs were audio recorded, translated and transcribed verbatim. Thematic analysis, drawing on constant comparison, was used to analyse the data.
RESULTS
Health system contexts may compete with new approaches especially when legislative health regulations or policy around treatment is ingrained in staff beliefs, perceptions and practice, which can undermine clinical trial recruitment. Trust plays a significant role in how patients engage with the trial. Decision-making processes are dynamic and associated with relationship to diagnosis, assimilation of information, previous knowledge or experience and influence of peers and close relations.
CONCLUSIONS
This qualitative analysis highlights ways in which insights developed together with patients and healthcare workers might inform approaches towards improved recruitment into trials, with the overall objective of delivering evidence for better treatments.
Addressing the global burden of multidrug-resistant tuberculosis (MDR-TB) requires identification of shorter, less toxic treatment regimens. Médecins Sans Frontières (MSF) is currently conducting a phase II/III randomised controlled clinical trial, to find more effective, shorter and tolerable treatments for people with MDR-TB. Recruitment to the trial in Uzbekistan has been slower than expected; we aimed to study patient and health worker experiences of the trial, examining potential factors perceived to impede and facilitate trial recruitment, as well as general perceptions of clinical research in this context.
METHODS
We conducted a qualitative study using maximum variation, purposive sampling of participants. We carried out in-depth interviews (IDIs) and focus group discussions (FGDs) guided by semi-structured topic guides. In December 2019 and January 2020, 26 interviews were conducted with patients, Ministry of Health (MoH) and MSF staff and trial health workers, to explore challenges and barriers to patient recruitment as well as perceptions of the trial and research in general. Preliminary findings from the interviews informed three subsequent focus group discussions held with patients, nurses and counsellors. Focus groups adopted a person-centred design, brainstorming potential solutions to problems and barriers. Interviews and FGDs were audio recorded, translated and transcribed verbatim. Thematic analysis, drawing on constant comparison, was used to analyse the data.
RESULTS
Health system contexts may compete with new approaches especially when legislative health regulations or policy around treatment is ingrained in staff beliefs, perceptions and practice, which can undermine clinical trial recruitment. Trust plays a significant role in how patients engage with the trial. Decision-making processes are dynamic and associated with relationship to diagnosis, assimilation of information, previous knowledge or experience and influence of peers and close relations.
CONCLUSIONS
This qualitative analysis highlights ways in which insights developed together with patients and healthcare workers might inform approaches towards improved recruitment into trials, with the overall objective of delivering evidence for better treatments.
Protocol > Research Protocol
Lenglet AD, Farley ES, Trienekens S, Amirtharajah M, Bil K, et al.
1 July 2018
BACKGROUND
Noma is an orofacial gangrene that rapidly eats away at the hard and soft tissue as well as the bones in the face. Noma has a 90% mortality rate, and the disease affects mostly children under the age of 5. Little is known about Noma as the majority of cases live in underserved, difficult to reach locations. MSF runs projects at the Noma Children’s Hospital in Sokoto, northern Nigeria and currently assists with surgical interventions for the patients who have survived and sought care at the hospital. Community outreach and active case finding are also taking place. These projects place MSF in a unique position to study Noma, and to add to the scant body of knowledge around the disease.
AIM
To identify risk factors for Noma in northwest Nigeria in terms of epidemiological (demographic characteristics, medical history), socio-economic-behavioural aspects and access to health care in order to better guide existing prevention strategies.
SPECIFIC OBJECTIVES
1. To understand concepts and perceptions of Noma within the population of northwestern Nigeria, specifically those affected (caretakers of Noma cases) by the disease, and controls matching these cases. To describe the epidemiological profile of all cases of Noma that have been treated at the MSF Noma Children’s Hospital from August 2015 until June 2016;
2. To describe the current Noma patient’s clinical history before the onset of the disease, the start of the disease and the care/treatment sought as well as the impact of Noma on the patient;
3. To assess Noma risk factors by comparing cases enrolled at the Noma Children’s Hospital and controls matched to cases by sex, age, and village of residence;
All of these objectives are in order to assess if there are intervention opportunities in the unique Nigerian setting that could prevent further Noma case development.
METHODS
1) Qualitative phase: focus groups will take place with care takers (guardians or parents) of cases as well as key informant interviews with health care workers to better understand the local concepts, vocabulary and expressions used to describe Noma in this part of Nigeria.
2) Descriptive epidemiology: description of all available medical, nutritional and mental health data associated with the Noma patients operated on at the Noma Children’s Hospital over the last year.
3) Case control study: assessing risk factors for Noma using care takers of cases recruited from the Noma Children’s Hospital and care takers of controls that are recruited from cases village of residence and matched by age and sex.
OUTCOMES
• Initiate the MSF operational research agenda around Noma in Nigeria;
• Improved understanding of local beliefs, traditions and language used to describe Noma;
• Improved understanding of Noma patients at the Sokoto Children’s hospital;
• Identification of preventable risk factors for Noma development in our patients;
• Integration of information obtained into outreach programming, improved community engagements, options for preventative campaigns and overall improved clinical and mental health care of Noma patients and caretakers in the MSF project.
Noma is an orofacial gangrene that rapidly eats away at the hard and soft tissue as well as the bones in the face. Noma has a 90% mortality rate, and the disease affects mostly children under the age of 5. Little is known about Noma as the majority of cases live in underserved, difficult to reach locations. MSF runs projects at the Noma Children’s Hospital in Sokoto, northern Nigeria and currently assists with surgical interventions for the patients who have survived and sought care at the hospital. Community outreach and active case finding are also taking place. These projects place MSF in a unique position to study Noma, and to add to the scant body of knowledge around the disease.
AIM
To identify risk factors for Noma in northwest Nigeria in terms of epidemiological (demographic characteristics, medical history), socio-economic-behavioural aspects and access to health care in order to better guide existing prevention strategies.
SPECIFIC OBJECTIVES
1. To understand concepts and perceptions of Noma within the population of northwestern Nigeria, specifically those affected (caretakers of Noma cases) by the disease, and controls matching these cases. To describe the epidemiological profile of all cases of Noma that have been treated at the MSF Noma Children’s Hospital from August 2015 until June 2016;
2. To describe the current Noma patient’s clinical history before the onset of the disease, the start of the disease and the care/treatment sought as well as the impact of Noma on the patient;
3. To assess Noma risk factors by comparing cases enrolled at the Noma Children’s Hospital and controls matched to cases by sex, age, and village of residence;
All of these objectives are in order to assess if there are intervention opportunities in the unique Nigerian setting that could prevent further Noma case development.
METHODS
1) Qualitative phase: focus groups will take place with care takers (guardians or parents) of cases as well as key informant interviews with health care workers to better understand the local concepts, vocabulary and expressions used to describe Noma in this part of Nigeria.
2) Descriptive epidemiology: description of all available medical, nutritional and mental health data associated with the Noma patients operated on at the Noma Children’s Hospital over the last year.
3) Case control study: assessing risk factors for Noma using care takers of cases recruited from the Noma Children’s Hospital and care takers of controls that are recruited from cases village of residence and matched by age and sex.
OUTCOMES
• Initiate the MSF operational research agenda around Noma in Nigeria;
• Improved understanding of local beliefs, traditions and language used to describe Noma;
• Improved understanding of Noma patients at the Sokoto Children’s hospital;
• Identification of preventable risk factors for Noma development in our patients;
• Integration of information obtained into outreach programming, improved community engagements, options for preventative campaigns and overall improved clinical and mental health care of Noma patients and caretakers in the MSF project.