Noma, also known as cancrum oris, is a rapidly progressing life-threatening infection that affects the mouth and face. Noma is preventable and easy to treat if addressed in the early reversible stages, but most often deadly if untreated. The disease most commonly affects children who are chronically malnourished or whose immune systems are otherwise compromised. Noma affects an estimated 140,000 children annually. Noma was added to the WHO's list of Neglected Tropical Diseases in 2023.
MSF is working to discover more about noma. This collection highlights MSF's mixed methods research on treatment outcomes, burden of disease, attitudes towards the disease and other aspects of noma.
For more information on MSF's work on noma, you can also visit https://noma.msf.org/.
10 result(s)
Journal Article > ResearchFull Text
Facial Plast Surg Aesthet Med, Facial plastic surgery and aesthetic medicine, JAMA Facial Plastic Surgery. 2024 July 26; Volume 26 (Issue 4); 488-496.
Amirtharajah M, Olaleye M, Oluyide B, Lenglet A, Ariti C, et al.
Facial Plast Surg Aesthet Med, Facial plastic surgery and aesthetic medicine, JAMA Facial Plastic Surgery. 2024 July 26; Volume 26 (Issue 4); 488-496.
BACKGROUND
Noma is a gangrenous infection of the face that results in severe facial deformity, occurring primarily in malnourished and impoverished populations.
OBJECTIVE
To assess clinician- and patient-reported outcomes (PROs) before and after reconstructive surgery for patients with noma in northwest Nigeria.
METHODS
Objective outcomes were recorded using the noma-specific NOITULP (nose, outer cheek, inner cheek, trismus, upper/lower lip, particularities) classification system. PROs were recorded using a locally developed tool. Postsurgical changes were assessed by Wilcoxon signed-rank testing. Linear regression was used to look for associated risk factors. The inter-rater reliability (IRR) of the NOITULP score was assessed using the weighted kappa statistic.
RESULTS
Forty-nine patients (median age 25 years, 71% male) underwent local/regional flap reconstruction and/or trismus release. Twelve complications were reported. Univariate analysis showed a 3.20 change in PRO score (95% confidence interval 0.59 to 5.81, p = 0.018) per kilogram the patient underwent at time of surgery. The NOITULP score improved from a presurgery median of 3.5 to 2.3 (p < 0.0001), however, the IRR was poor (kappa = 0.0894, p < 0.0001). The PRO score also improved from a median of 7.0 to 12.0 (p < 0.0001).
CONCLUSIONS
Facial reconstructive surgery improves the NOITULP score and PROs in patients with noma in northwest Nigeria.
Journal Article > ReviewAbstract Only
Curr Opin Otolaryngol Head Neck Surg. 2022 July 5; Volume 30 (Issue 4); 219-225.
Farley ES, Amirtharajah M, Shaye DA
Curr Opin Otolaryngol Head Neck Surg. 2022 July 5; Volume 30 (Issue 4); 219-225.
PURPOSE OF REVIEW
There is a need for concerted effort to increase global awareness about noma (cancrum oris). This paper aims to summarize the recent literature on noma and provide suggestions that could be implemented to raise awareness about this neglected disease.
RECENT FINDINGS
Noma has been recognized, diagnosed and reported for centuries. Despite significant progress in scientific methods over time, the published literature on noma has predominantly been of low level clinical and scientific evidence. Recent studies have reported on noma's global distribution and its predisposing risk factors, its treatment, its knowledge and beliefs and has included a number of literature reviews. Noma cases are being reported from an increasingly diverse set of geographical locations.
SUMMARY
Noma has largely been neglected in the research sphere. Noma is a preventable disease and its progression can be halted if patients are recognized and treated in the early stages of disease. Treatment for late stage noma survivors remains complex and time consuming, requiring substantial human and financial resources most commonly not achieving functional and cosmetic anatomy. The ultimate aim is therefore prevention, initiatives should be integrated into existing health programs.
There is a need for concerted effort to increase global awareness about noma (cancrum oris). This paper aims to summarize the recent literature on noma and provide suggestions that could be implemented to raise awareness about this neglected disease.
RECENT FINDINGS
Noma has been recognized, diagnosed and reported for centuries. Despite significant progress in scientific methods over time, the published literature on noma has predominantly been of low level clinical and scientific evidence. Recent studies have reported on noma's global distribution and its predisposing risk factors, its treatment, its knowledge and beliefs and has included a number of literature reviews. Noma cases are being reported from an increasingly diverse set of geographical locations.
SUMMARY
Noma has largely been neglected in the research sphere. Noma is a preventable disease and its progression can be halted if patients are recognized and treated in the early stages of disease. Treatment for late stage noma survivors remains complex and time consuming, requiring substantial human and financial resources most commonly not achieving functional and cosmetic anatomy. The ultimate aim is therefore prevention, initiatives should be integrated into existing health programs.
Journal Article > ReviewFull Text
PLoS Negl Trop Dis. 2021 December 14; Volume 15 (Issue 12); e0009844.
Farley ES, Mehta UC, Srour ML, Lenglet AD
PLoS Negl Trop Dis. 2021 December 14; Volume 15 (Issue 12); e0009844.
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.
Journal Article > CommentaryFull Text
PLoS Negl Trop Dis. 2021 June 17; Volume 15 (Issue 6); e0009437.
Farley ES, Ariti C, Amirtharajah M, Kamu C, Oluyide B, et al.
PLoS Negl Trop Dis. 2021 June 17; Volume 15 (Issue 6); e0009437.
Journal Article > CommentaryFull Text
Trop Med Int Health. 2021 June 3; Volume 26 (Issue 9); 1088-1097.
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.
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 > Case Report/SeriesFull Text
Trans R Soc Trop Med Hyg. 2020 August 12; Volume 114 (Issue 11); 812-819.
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.
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 > ResearchFull Text
BMJ Glob Health. 2020 April 14; Volume 5 (Issue 4); e002141.
Farley ES, Oyemakinde MJ, Schuurmans J, Ariti C, Saleh F, et al.
BMJ Glob Health. 2020 April 14; Volume 5 (Issue 4); e002141.
BACKGROUND
Noma, a rapidly progressing infection of the oral cavity, mainly affects children. The true burden is unknown. This study reports estimated noma prevalence in children in northwest Nigeria.
METHODS
Oral screening was performed on all ≤15 year olds, with caretaker consent, in selected households during this cross-sectional survey. Noma stages were classified using WHO criteria and caretakers answered survey questions. The prevalence of noma was estimated stratified by age group (0–5 and 6–15 years). Factors associated with noma were estimated using logistic regression.
RESULTS
A total of 177 clusters, 3499 households and 7122 children were included. In this sample, 4239 (59.8%) were 0–5 years and 3692 (52.1%) were female. Simple gingivitis was identified in 3.1% (n=181; 95% CI 2.6 to 3.8), acute necrotising gingivitis in 0.1% (n=10; CI 0.1 to 0.3) and oedema in 0.05% (n=3; CI 0.02 to 0.2). No cases of late-stage noma were detected. Multivariable analysis in the group aged 0–5 years showed having a well as the drinking water source (adjusted odds ratio (aOR) 2.1; CI 1.2 to 3.6) and being aged 3–5 years (aOR 3.9; CI 2.1 to 7.8) was associated with being a noma case. In 6–15 year olds, being male (aOR 1.5; CI 1.0 to 2.2) was associated with being a noma case and preparing pap once or more per week (aOR 0.4; CI 0.2 to 0.8) was associated with not having noma. We estimated that 129120 (CI 105294 to 1 52 947) individuals <15 years of age would have any stage of noma at the time of the survey within the two states. Most of these cases (93%; n=120 082) would be children with simple gingivitis.
CONCLUSIONS
Our study identified a high prevalence of children at risk of developing advanced noma. This disease is important but neglected and therefore merits inclusion in the WHO neglected tropical diseases list.
Noma, a rapidly progressing infection of the oral cavity, mainly affects children. The true burden is unknown. This study reports estimated noma prevalence in children in northwest Nigeria.
METHODS
Oral screening was performed on all ≤15 year olds, with caretaker consent, in selected households during this cross-sectional survey. Noma stages were classified using WHO criteria and caretakers answered survey questions. The prevalence of noma was estimated stratified by age group (0–5 and 6–15 years). Factors associated with noma were estimated using logistic regression.
RESULTS
A total of 177 clusters, 3499 households and 7122 children were included. In this sample, 4239 (59.8%) were 0–5 years and 3692 (52.1%) were female. Simple gingivitis was identified in 3.1% (n=181; 95% CI 2.6 to 3.8), acute necrotising gingivitis in 0.1% (n=10; CI 0.1 to 0.3) and oedema in 0.05% (n=3; CI 0.02 to 0.2). No cases of late-stage noma were detected. Multivariable analysis in the group aged 0–5 years showed having a well as the drinking water source (adjusted odds ratio (aOR) 2.1; CI 1.2 to 3.6) and being aged 3–5 years (aOR 3.9; CI 2.1 to 7.8) was associated with being a noma case. In 6–15 year olds, being male (aOR 1.5; CI 1.0 to 2.2) was associated with being a noma case and preparing pap once or more per week (aOR 0.4; CI 0.2 to 0.8) was associated with not having noma. We estimated that 129120 (CI 105294 to 1 52 947) individuals <15 years of age would have any stage of noma at the time of the survey within the two states. Most of these cases (93%; n=120 082) would be children with simple gingivitis.
CONCLUSIONS
Our study identified a high prevalence of children at risk of developing advanced noma. This disease is important but neglected and therefore merits inclusion in the WHO neglected tropical diseases list.
Journal Article > ResearchFull Text
PLoS Negl Trop Dis. 2020 January 23; Volume 14 (Issue 1); e0007972.
Farley ES, Lenglet AD, Abubakar A, Bil K, Fotso A, et al.
PLoS Negl Trop Dis. 2020 January 23; Volume 14 (Issue 1); e0007972.
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
Int Health. 2020 January 1; Volume 12 (Issue 1); 28-35.
Farley ES, Bala HM, Lenglet AD, Mehta UC, Abubakar N, et al.
Int Health. 2020 January 1; Volume 12 (Issue 1); 28-35.
BACKGROUND
Noma, a neglected disease mostly affecting children, with a 90% mortality rate if untreated, is an orofacial gangrene that disintegrates the tissues of the face in <1 wk. Noma can become inactive with early stage antibiotic treatment. Traditional healers, known as mai maganin gargajiya in Hausa, play an important role in the health system and provide care to noma patients.
METHODS
We conducted 12 in-depth interviews with caretakers who were looking after noma patients admitted at the Noma Children's Hospital and 15 traditional healers in their home villages in Sokoto state, northwest Nigeria. We explored perceptions of noma, relationship dynamics, healthcare practices and intervention opportunities. Interviews were audiorecorded, transcribed and translated. Manual coding and thematic analysis were utilised.
RESULTS
Traditional healers offered specialised forms of care for specific conditions and referral guidance. They viewed the stages of noma as different conditions with individualised remedies and were willing to refer noma patients. Caretakers trusted traditional healers.
CONCLUSIONS
Traditional healers could play a crucial role in the early detection of noma and the health-seeking decision-making process of patients. Intervention programmes should include traditional healers through training and referral partnerships. This collaboration could save lives and reduce the severity of noma complications.
Noma, a neglected disease mostly affecting children, with a 90% mortality rate if untreated, is an orofacial gangrene that disintegrates the tissues of the face in <1 wk. Noma can become inactive with early stage antibiotic treatment. Traditional healers, known as mai maganin gargajiya in Hausa, play an important role in the health system and provide care to noma patients.
METHODS
We conducted 12 in-depth interviews with caretakers who were looking after noma patients admitted at the Noma Children's Hospital and 15 traditional healers in their home villages in Sokoto state, northwest Nigeria. We explored perceptions of noma, relationship dynamics, healthcare practices and intervention opportunities. Interviews were audiorecorded, transcribed and translated. Manual coding and thematic analysis were utilised.
RESULTS
Traditional healers offered specialised forms of care for specific conditions and referral guidance. They viewed the stages of noma as different conditions with individualised remedies and were willing to refer noma patients. Caretakers trusted traditional healers.
CONCLUSIONS
Traditional healers could play a crucial role in the early detection of noma and the health-seeking decision-making process of patients. Intervention programmes should include traditional healers through training and referral partnerships. This collaboration could save lives and reduce the severity of noma complications.
Journal Article > ResearchFull Text
PLoS Negl Trop Dis. 2018 August 23; Volume 12 (Issue 8)
Farley ES, Lenglet AD, Ariti C, Jiya NM, Adetunji AS, et al.
PLoS Negl Trop Dis. 2018 August 23; Volume 12 (Issue 8)
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.
