Conference Material > Video (talk)
Ajamah S
MSF Paediatric Days 2022. 2022 December 1; DOI:10.57740/95q8-ne84
Journal Article > ReviewFull Text
PLoS Negl Trop Dis. 2021 December 14; Volume 15 (Issue 12); e0009844.; DOI:10.1371/journal.pntd.0009844
Farley ES, Mehta UC, Srour ML, Lenglet AD
PLoS Negl Trop Dis. 2021 December 14; Volume 15 (Issue 12); e0009844.; DOI:10.1371/journal.pntd.0009844
BACKGROUND
Noma (cancrum oris) is an ancient but neglected and poorly understood preventable disease, afflicting the most disenfranchised populations in the world. It is a devastating and often fatal condition that requires urgent and intensive clinical and surgical care, often difficult to access as most cases of noma occur in resource-limited settings. We conducted a scoping review of the literature published on noma to understand the size and scope of available research on the disease and identify research gaps that need to be addressed to evolve our understanding of how to address this disease.
METHODS
We searched 11 databases and collected primary peer reviewed articles on noma in all languages, the final search was conducted on 24th August 2021. The oldest manuscript identified was from 28th March 1843 and the most recently published manuscript was from 3rd June 2021. Search terms included cancrum oris and noma. Data was extracted using a standardised data extraction tool and key areas of interest were identified. The Preferred Reporting Items for Systemic review and Meta-Analyses requirements were followed.
RESULTS
The review included 147 articles, the majority of the studies (n = 94, 64%) were case reports. Most manuscripts (n = 81, 55%) were published in the 2000s, 49 (33%) were from the 1900s and 17 (12%) from the 1800s. The main areas of interest identified were the history and epidemiology of the disease, noma's clinical progression and aetiology, treatment regimens, mortality rates and the risk factors for the development of noma.
CONCLUSIONS
Noma has been reported in the literature for hundreds of years; however important gaps in our understanding of the disease remain. Future research should focus on determining the burden and distribution of disease; the true mortality rate, pathogenic cause(s) and the factors that influence prognosis and outcomes after treatment.
Noma (cancrum oris) is an ancient but neglected and poorly understood preventable disease, afflicting the most disenfranchised populations in the world. It is a devastating and often fatal condition that requires urgent and intensive clinical and surgical care, often difficult to access as most cases of noma occur in resource-limited settings. We conducted a scoping review of the literature published on noma to understand the size and scope of available research on the disease and identify research gaps that need to be addressed to evolve our understanding of how to address this disease.
METHODS
We searched 11 databases and collected primary peer reviewed articles on noma in all languages, the final search was conducted on 24th August 2021. The oldest manuscript identified was from 28th March 1843 and the most recently published manuscript was from 3rd June 2021. Search terms included cancrum oris and noma. Data was extracted using a standardised data extraction tool and key areas of interest were identified. The Preferred Reporting Items for Systemic review and Meta-Analyses requirements were followed.
RESULTS
The review included 147 articles, the majority of the studies (n = 94, 64%) were case reports. Most manuscripts (n = 81, 55%) were published in the 2000s, 49 (33%) were from the 1900s and 17 (12%) from the 1800s. The main areas of interest identified were the history and epidemiology of the disease, noma's clinical progression and aetiology, treatment regimens, mortality rates and the risk factors for the development of noma.
CONCLUSIONS
Noma has been reported in the literature for hundreds of years; however important gaps in our understanding of the disease remain. Future research should focus on determining the burden and distribution of disease; the true mortality rate, pathogenic cause(s) and the factors that influence prognosis and outcomes after treatment.
Protocol > Research Study
Lenglet AD, Farley ES, Trienekens S, Amirtharajah M, Bil K, et al.
2018 July 1
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.
Journal Article > ReviewFull Text
Facial Plast Surg. 2021 January 31; Volume 37 (Issue 04); 439-445.; DOI:10.1055/s-0041-1722894
Miller LE, Shaye DA
Facial Plast Surg. 2021 January 31; Volume 37 (Issue 04); 439-445.; DOI:10.1055/s-0041-1722894
Necrotizing fasciitis (NF) is part of the class of necrotizing soft tissue infections characterized by rapid fascial spread and necrosis of the skin, subcutaneous tissue, and superficial fascia. If left untreated, NF can rapidly deteriorate into multiorgan shock and systemic failure. NF most commonly infects the trunk and lower extremities, although it can sometimes present in the head and neck region. This review provides an overview of NF as it relates specifically to the head and neck region, including its associated clinical features and options for treatment. Noma, a related but relatively unknown disease, is then described along with its relationship with severe poverty.
Journal Article > Case Report/SeriesFull Text
Trans R Soc Trop Med Hyg. 2020 August 12; Volume 114 (Issue 11); 812-819.; DOI:10.1093/trstmh/traa061
Farley ES, Amirtharajah M, Winters RD, Taiwo AO, Oyemakinde MJ, et al.
Trans R Soc Trop Med Hyg. 2020 August 12; Volume 114 (Issue 11); 812-819.; DOI:10.1093/trstmh/traa061
BACKGROUND
Noma is a rapidly progressing infection of the oral cavity frequently resulting in severe facial disfigurement. We present a case series of noma patients surgically treated in northwest Nigeria.
METHODS
A retrospective analysis of routinely collected data (demographics, diagnosis and surgical procedures undergone) and in-person follow-up assessments (anthropometry, mouth opening and quality of life measurements) were conducted with patients who had surgery >6 mo prior to data collection.
RESULTS
Of the 37 patients included, 21 (56.8%) were male and 22 (62.9%) were aged >6 y. The median number of months between last surgery and follow-up was 18 (IQR 13, 25) mo. At admission, the most severely affected anatomical area was the outer cheek (n = 9; 36.0% of patients had lost between 26% and 50%). The most frequent surgical procedures were the deltopectoral flap (n = 16; 43.2%) and trismus release (n = 12; 32.4%). For the eight trismus-release patients where mouth opening was documented at admission, all had a mouth opening of 0–20 mm at follow-up. All patients reported that the surgery had improved their quality of life.
CONCLUSIONS
Following their last surgical intervention, noma patients do experience some improvements in their quality of life, but debilitating long-term sequelae persist.
Noma is a rapidly progressing infection of the oral cavity frequently resulting in severe facial disfigurement. We present a case series of noma patients surgically treated in northwest Nigeria.
METHODS
A retrospective analysis of routinely collected data (demographics, diagnosis and surgical procedures undergone) and in-person follow-up assessments (anthropometry, mouth opening and quality of life measurements) were conducted with patients who had surgery >6 mo prior to data collection.
RESULTS
Of the 37 patients included, 21 (56.8%) were male and 22 (62.9%) were aged >6 y. The median number of months between last surgery and follow-up was 18 (IQR 13, 25) mo. At admission, the most severely affected anatomical area was the outer cheek (n = 9; 36.0% of patients had lost between 26% and 50%). The most frequent surgical procedures were the deltopectoral flap (n = 16; 43.2%) and trismus release (n = 12; 32.4%). For the eight trismus-release patients where mouth opening was documented at admission, all had a mouth opening of 0–20 mm at follow-up. All patients reported that the surgery had improved their quality of life.
CONCLUSIONS
Following their last surgical intervention, noma patients do experience some improvements in their quality of life, but debilitating long-term sequelae persist.
Journal Article > CommentaryFull Text
PLoS Negl Trop Dis. 2021 June 17; Volume 15 (Issue 6); e0009437.; DOI:10.1371/journal.pntd.0009437
Farley ES, Ariti C, Amirtharajah M, Kamu C, Oluyide B, et al.
PLoS Negl Trop Dis. 2021 June 17; Volume 15 (Issue 6); e0009437.; DOI:10.1371/journal.pntd.0009437
Journal Article > CommentaryFull Text
Trop Med Int Health. 2021 June 3; Volume 26 (Issue 9); 1088-1097.; DOI:10.1111/tmi.13630
Isah S, Amirtharajah M, Farley ES, Adetunji AS, Samuel J, et al.
Trop Med Int Health. 2021 June 3; Volume 26 (Issue 9); 1088-1097.; DOI:10.1111/tmi.13630
The Nigerian Ministry of Health has been offering care for noma patients for many years at the Noma Children's Hospital (NCH) in Sokoto, northwest Nigeria, and Médecins Sans Frontières has supported these initiatives since 2014. The comprehensive model of care consists of four main components: acute care, care for noma sequelae, integrated hospital-based services and community-based services. The model of care is based on the limited evidence available for prevention and treatment of noma and follows WHO's protocols for acute patients and best practice guidelines for the surgical treatment of noma survivors. The model is updated continually as new evidence becomes available, including evidence generated through the operational research studies performed at NCH. By describing the model of care, we wish to share the lessons learned with other actors working in the noma and neglected tropical disease sphere in the hope of guiding programme development.
Journal Article > ResearchFull Text
PLoS Negl Trop Dis. 2018 August 23; Volume 12 (Issue 8); DOI:10.1371/journal.pntd.0006631
Farley ES, Lenglet AD, Ariti C, Jiya NM, Adetunji AS, et al.
PLoS Negl Trop Dis. 2018 August 23; Volume 12 (Issue 8); DOI:10.1371/journal.pntd.0006631
Noma (cancrum oris), a neglected tropical disease, rapidly disintegrates the hard and soft tissue of the face and leads to severe disfiguration and high mortality. The disease is poorly understood. We aimed to estimate risk factors for diagnosed noma to better guide existing prevention and treatment strategies using a case-control study design.
Journal Article > ResearchFull Text
PLoS Negl Trop Dis. 2020 January 23; Volume 14 (Issue 1); e0007972.; DOI:10.1371/journal.pntd.0007972
Farley ES, Lenglet AD, Abubakar A, Bil K, Fotso A, et al.
PLoS Negl Trop Dis. 2020 January 23; Volume 14 (Issue 1); e0007972.; DOI:10.1371/journal.pntd.0007972
BACKGROUND
Noma is an orofacial gangrene that rapidly disintegrates the tissues of the face. Little is known about noma, as most patients live in underserved and inaccessible regions. We aimed to assess the descriptive language used and beliefs around noma, at the Noma Children's Hospital in Sokoto, Nigeria. Findings will be used to inform prevention programs.
METHODS
Five focus group discussions (FGD) were held with caretakers of patients with noma who were admitted to the hospital at the time of interview, and 12 in-depth interviews (IDI) were held with staff at the hospital. Topic guides used for interviews were adapted to encourage the natural flow of conversation. Emergent codes, patterns and themes were deciphered from the data derived from IDI's and FGDs.
RESULTS
Our study uncovered two main themes: names, descriptions and explanations for the disease, and risks and consequences of noma. Naming of the disease differed between caretakers and heath care workers. The general names used for noma illustrate the beliefs and social system used to explain the disease. Beliefs were varied; participant responses demonstrate a wide range of understanding of the disease and its causes. Difficulty in accessing care for patients with noma was evident and the findings suggest a variety of actions taking place before reaching a health center or health worker. Patient caretakers mentioned that barriers to care included a lack of knowledge regarding this medical condition, as well as a lack of trust in seeking medical care. Participants in our study spoke of the mental health strain the disease placed on them, particularly due to the stigma that is associated with noma.
CONCLUSIONS
Caretaker and practitioner perspectives enhance our understanding of the disease in this context and can be used to improve treatment and prevention programs, and to better understand barriers to accessing health care. Differences in disease naming illustrate the difference in beliefs about the disease. This has an impact on health seeking behaviours, which for noma cases has important ramifications on outcomes, due to the rapid progression of the disease.
Noma is an orofacial gangrene that rapidly disintegrates the tissues of the face. Little is known about noma, as most patients live in underserved and inaccessible regions. We aimed to assess the descriptive language used and beliefs around noma, at the Noma Children's Hospital in Sokoto, Nigeria. Findings will be used to inform prevention programs.
METHODS
Five focus group discussions (FGD) were held with caretakers of patients with noma who were admitted to the hospital at the time of interview, and 12 in-depth interviews (IDI) were held with staff at the hospital. Topic guides used for interviews were adapted to encourage the natural flow of conversation. Emergent codes, patterns and themes were deciphered from the data derived from IDI's and FGDs.
RESULTS
Our study uncovered two main themes: names, descriptions and explanations for the disease, and risks and consequences of noma. Naming of the disease differed between caretakers and heath care workers. The general names used for noma illustrate the beliefs and social system used to explain the disease. Beliefs were varied; participant responses demonstrate a wide range of understanding of the disease and its causes. Difficulty in accessing care for patients with noma was evident and the findings suggest a variety of actions taking place before reaching a health center or health worker. Patient caretakers mentioned that barriers to care included a lack of knowledge regarding this medical condition, as well as a lack of trust in seeking medical care. Participants in our study spoke of the mental health strain the disease placed on them, particularly due to the stigma that is associated with noma.
CONCLUSIONS
Caretaker and practitioner perspectives enhance our understanding of the disease in this context and can be used to improve treatment and prevention programs, and to better understand barriers to accessing health care. Differences in disease naming illustrate the difference in beliefs about the disease. This has an impact on health seeking behaviours, which for noma cases has important ramifications on outcomes, due to the rapid progression of the disease.
Journal Article > ResearchFull Text
PLOS Glob Public Health. 2023 September 1; Volume 3 (Issue 9); e0001995.; DOI:10.1371/journal.pgph.0001995
Oluwalomola OV, Briskin E, Olaleye M, Samuel J, Oluyide B, et al.
PLOS Glob Public Health. 2023 September 1; Volume 3 (Issue 9); e0001995.; DOI:10.1371/journal.pgph.0001995
Noma is a rapidly progressing infection of the oral cavity, which can cause the disintegration of the cheek, nose and eye, in under a week. One of the most disabling sequelae is trismus, the restriction of mouth opening, which results in difficulties in speech, mastication, social feeding habits and maintenance of oral hygiene. Restriction of mouth opening among noma patients mostly begins during the transition between World Health Organisation (WHO) stage 3 (gangrene) and stage 4 (scarring) of the disease. This study aims to describe the impact of physiotherapy in noma patients hospitalised with stages 3 and 4 of the disease and to identify factors that influence change in mouth opening of noma patients. This study is a retrospective analysis of routinely collected data from patients admitted at Noma Children Hospital, Sokoto, Northwest Nigeria between 1 May 2018 and 1 May 2020. Eligible patients included stage 3 and 4 noma patients who had not undergone any surgical reconstruction or trismus release surgery but received physiotherapy assessment and treatment during initial hospitalization. Factors associated with a change in mouth opening were identified using paired t-test analysis, bivariate and multivariate analyses. The mean difference in the mouth opening from admission to discharge was 6.9mm (95% CI: 5.4 to 8.3, p < 0.0001). Increased number of physiotherapy sessions and patient age above three years were significant predictors of improvement in mouth opening (p-value 0.011, 0.001 respectively). Physiotherapy treatment received within an adequate number of physiotherapy sessions for stage 3 and 4 noma patients during the period of the first hospitalization is important and results in a significant increase in mouth opening. Hence, noma patients at these stages should routinely undergo physiotherapy as part of a holistic approach to treatment.