Noma, a neglected disease: prevention is better than cure : Current Opinion in Otolaryngology & Head and Neck Surgery

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FACIAL PLASTIC SURGERY: Edited by David A. Shaye

Noma, a neglected disease: prevention is better than cure

Farley, Elisea,b; Amirtharajah, Mohanac; Shaye, David A.c,d,e

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Current Opinion in Otolaryngology & Head and Neck Surgery 30(4):p 219-225, August 2022. | DOI: 10.1097/MOO.0000000000000819
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Abstract

INTRODUCTION

The word ‘noma’ is derived from Greek, loosely translated as ‘the devouring of a pasture by a flock’ [1] credited for its first use by Dutch surgeon Cornelis van de Voorde in 1680 [2]. He described a rapidly spreading ulceration originating in wet soft tissues in children, ‘typical of the mouth’ [2]. Noma, or cancrum oris, is currently described as a rapidly progressing infection of the oral cavity, associated with a reported 90% mortality rate within weeks from onset if untreated [3]. Noma mostly affects young children who lack access to basic nutrition and healthcare (specifically childhood immunizations), although uncommon cases have been reported in immunocompromised adults [3]. Noma is preventable, and as living conditions in areas improve, noma is eradicated [3]. 

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Box 1:
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Pathogenesis

The pathogenesis of noma is poorly understood and the microbiology is debated. A range of organisms have been identified in the oral flora of noma patients but none have been consistently present casting doubt on a specific organism's role in the development of the disease [4–9].

Epidemiology and staging

Currently, noma is most commonly reported in low and middle-income countries in Africa and Asia [10]. In 1998, the World Health Organization (WHO) estimated that 140 000 new cases of noma occur each year globally and that 770 000 patients were living with noma sequelae at that time [11]. For the purposes of case detection, the WHO has classified noma into stages; Stage 0: simple gingivitis; Stage 1: acute necrotizing gingivitis; Stage 2: edema; Stage 3: gangrene; Stage 4: scarring and Stage 5: sequelae [3] (Figs. 1 and 2). The aesthetic and functional sequelae of noma are compounded by the psychosocial impact of the disease due to the social isolation and shunning of survivors and their families, bullying, a lack of access to education, difficulties finding jobs, and limited marital prospects [12–16].

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FIGURE 1:
A 3-year old with WHO Stage 3 noma, note the defect of the lower lip and gum with the near-complete necrosis at the centre. Photo published with consent from caretaker of the child.
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FIGURE 2:
A 3-year old with WHO Stage 5 noma who has been left with a significant defect affecting the left eye and cheek. Photo published with consent from caretaker of the child.

NEGLECT OF NOMA RESEARCH

Noma has been reported in the scientific literature for centuries. Despite significant progress in scientific methods since these ancient reports, the literature on noma has predominantly been comprised of low level evidence such as case reports [10]. The focus of recent literature on noma (2019–2021) includes noma's distribution and risk factors [17–19], treatment [20–34], knowledge and beliefs about the disease [14,35–37] along with reviews of the literature and viewpoints [38–41]. Recent literature (2019–2021) has shown that noma cases are being reported from an increasingly diverse set of geographical locations outside of Africa including China [22,28], India [23], Vietnam, [24] and Indonesia [33] (Fig. 3). There have also been two landmark publications in 2022, one systematic review [42▪▪] and one case series from Lao [43▪▪] mirroring this wider distribution which dispels the prior claim that there is a so called ‘noma-belt’ in Africa. This increase in reporting could either indicate an increase in awareness about noma by treating physicians (who then write up case reports), or perhaps an increase in health seeking by patients to these physicians, or an increase in the publication of literature on noma. Whatever the reason, the increase in reporting of noma is assisting researchers to better understand the disease distribution; however, in order to further this understanding, robust primary studies on the distribution and burden of disease are needed.

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FIGURE 3:
Map of noma cases reported from 2019 to 2021 (map made using Data Wrapper: https://datawrapper.dwcdn.net/BY3TA/1/).

Gaps in knowledge

The neglect of noma in the research sector has led to several major gaps in knowledge about the disease including a lack of robust estimates of the global distribution and burden of disease; incomplete understanding of the true mortality rate and pathogenic cause(s) of noma; and limited understanding of factors that influence prognosis and the long-term outcomes after care (surgical and nonsurgical) [43▪▪,44–46].

TREATMENT OF NOMA

A comprehensive treatment package for noma addresses treatment of acute noma, treatment of secondary noma sequelae through surgery, and treatment of the psychosocial aspects of the disease (models of care are discussed in greater detail below).

Acute noma care

Treatment with antibiotics, conservative wound debridement, and nutritional support in the early, reversible stages of the disease can reduce the duration and severity of the acute phase and the extent of tissue damage, thus reducing mortality and morbidity of noma (Table 1) [3]. The current WHO guidelines for the management of the acute stages in clinical settings include: oral hygiene (mouthwash with chlorhexidine 0.2%, 10 ml), antibiotic treatment (amoxicillin and metronidazole), nutritional support (high protein diet), wound cleaning (compresses soaked in diluted hydrogen peroxide) and dressing (honey for local dressing and for antibacterial action and regeneration) [3].

Table 1 - Description of each stage of noma and treatment per stage based on the WHO guidelines [3] (more information on other aspects of management can be found in the guidelines [3])
Stage Description Treatment
Stage 0: simple gingivitis Bleeding gums when touchedRed/purple gumsGum swelling Mouthwash with chlorhexidine 0.2%, 10 ml/3 times dailyMouthwash with betadine/2 times daily can be used for children aged 0–6 years: clean the inflamed area with a compressVitamin A supplements
Stage 1: acute necrotizing gingivitis Spontaneous bleeding of gumPainful ulceration of gumFetid breathExcessive salivation Amoxicillin PO 100 mg/ kg every 12 h for 14 days + metronidazole PO 15 mg/kg every 12 h for 14 daysMouthwash with chlorhexidine 0.2%, 10 ml/3 times daily •Aspirin or paracetamol • Use compresses soaked in hydrogen peroxide 20 volumes to clean the gum lesionsVitamin A supplements • Nutritional rehabilitation: high-energy, ready to use paste, 3 sachets/daily
Stage 2: oedema Rapid extension of gingival ulcerationFetid breathFacial swelling/oedemaPainful cheekHigh feverExcessive salivationMouth sorenessDifficulty eating/anorexiaLymphadenopathy Antibiotic treatment Option 1: Amoxicillin & clavulanic acid, 50 mg/kg intravenously every 6 h for 14 days + slow intravenous administration of gentamycin, 5 mg /kg every 24 h for 5–7 days + slow intravenous administration of metronidazole, 15 mg/kg every 12 h for 14 days Option 2: Ampicillin intravenously, 100 mg/ kg every 6 h for 14 days + slow intravenous administration of gentamycin, 5 mg/kg every 24 h for 5–7 days + slow intravenous administration of metronidazole, 15 mg/kg every 12 h for 14 daysMouthwash with Chlorhexidine 0,2%, 10 ml 3 times daily
Stage 3: gangrene Destruction of intraoral and soft and hard tissueLesion with blackened center and well demarcated perimeterSloughing with a hole in the face, often near cheeks or lipsDifficulty eatingRapid perforation of the cheekExposure of teeth and bonesTransition from wet to dry gangreneAnorexia and/or apathy Antibiotics, intravenous for 14 days, as in Stage 2
Stage 4: scarring Trismus may occurSequestration of the teethExposure of boneScarring Antibiotics, intravenous for 14 days, as in Stage 2
Stage 5: sequelae Disfigurement, Tooth lossTrismusFeeding and speech difficultiesSalivary leakTooth displacement and/or dental anarchyFusion of mandible and maxillaNasal regurgitation Surgical managementPhysiotherapyOccupational therapy

Care for patients with sequelae

Those who survive the early stages will often have severe sequelae such as difficulty eating, vision loss, trismus, drooling, and dental anarchy [3,30,47]. Many survivors only receive complex surgical reconstruction to address these difficulties decades after the acute infection has resolved [30,43▪▪,44]. The most commonly used classification systems for noma surgical programs are the Montandon system which focuses classification on the area of the face implicated [48], the WHO noma classification system which classifies noma according to distinct stages of clinical progression [3] and the nose, outer lining, inner lining, trismus, upper lip, lower lip, particularities (NOITULP) grading tool which classifies noma cases based on the percentage loss of each anatomical unit [49]. Appropriate reconstructive surgery is performed to repair defects and restore esthetic form and function, utilizing local, regional, pedicled, and free flaps along with surgery of the craniofacial skeleton [23,24,28,29,33,48,50–53]. Surgical plans are formulated from a multidisciplinary group, with special consideration for airway management, postoperative care settings, and physical therapy needs.

Stigma and discrimination

The aesthetic and functional sequelae of noma are compounded by the psychological impacts of the disease, not only on the patient, but also on family members and caretakers. A 2020 Ethiopian study of 80 patients found that before surgery, 65% of survivors covered their face in public, 59% reported difficulty eating, 81% were unhappy with their appearance, and 71% experienced bullying [30]. These findings are mirrored in a Lao study (n = 50) whose respondents also mentioned not being able to get married due to the discrimination they faced because of noma [43▪▪]. Other studies have shown that noma survivors face stigmatization, excessive questions about their physical appearance [12–15], a lack of access to education, difficulties finding jobs, and limited marital prospects [12,16]. All of these factors contribute to the mental strain of survivors and their families [54,55]. For many survivors, this stigmatization is the leading reason for seeking care [31,51]. As such, treatment programs should encompass a mental health component [34]. This component should be paired with a concerted effort to sensitize communities by sharing information about noma in an attempt to decrease the stigma survivors’ face.

Normal anatomy not restored

Complete restoration of normal anatomy is not a realistic aim of noma surgery due to the widespread destruction of the orofacial tissues. As such, the goal of noma surgery is to improve function where possible and the quality of life of the survivor. Recent studies have shown that a range of methods are used to treat noma cases, and that although prenoma functionality is not often restored, surgical treatment does improve patients’ quality of life [20–34]. Specific improvements included decreased social isolation and improved functionality such as eating and speaking [31].

Recent literature has pointed to the need for a standardized noma patient reported outcome tool which can be used in a range of settings where noma surgery takes place [31,45]. This standardization would allow for comparison between study results in different locations. The collection of this data from a variety of noma care service providers would contribute to a better understanding of the lived experiences of noma survivors and their families.

Trismus – an unsolved problem

Trismus, caused by soft tissue and muscle contraction during healing from acute noma, is one of the most debilitating sequelae of noma. Trismus can lead to complications such as aspiration, malnutrition, poor oral hygiene, speech deficits, a compromised airway, and pain [29]. The goals of surgery for noma-related trismus include increasing the mouth opening to ensure the patient is able to eat, speak, and live with as little restriction of mouth opening as possible. Challenges with anaesthesia for noma survivors have been reported, particularly in patients with severe trismus, making the availability of fiberoptic intubation a necessity for performance of trismus release surgery [23,26,27,33].

Trismus surgery for noma is associated with high rates of recurrence, further exacerbated by a lack of access to continual physiotherapy [29,34]. Noma patients frequently live in remote locations with limited access to healthcare, and access to specialized physiotherapy is rare. Without this continued care, reoccurrence rates increase.

This point is highlighted in a recent study including 40 noma patients treated for trismus in Niger using distraction therapy. In this study, although the mean interincisal distance of 2.7 ± 0.5 cm obtained immediately after treatment was retained for the first 6 months, 3–5 years after treatment some signs of relapse were detected, and the average mouth opening decreased to 1.5 ± 1.9 cm [29]. This cohort of patients did not have access to physiotherapy [29]. As trismus is a common and severe sequelae of noma, a rigorous physiotherapy program for all patients with a restriction of mouth opening is important to include in any treatment plan.

Program integration

Noma patients are most frequently cared for by the ministries of health in their home countries. The WHO have developed guidelines for care [3] as well as a step-by-step guide to develop national action plans for noma prevention and control in priority countries [13]. The number of surgeons who have the required skill set to treat the sequelae of noma is very limited globally, and especially in noma-endemic countries. To fill this gap, nongovernmental organizations (NGO's) also provide care for noma patients. NGO's use different models to provide care. Some organizations transport patients to established hospitals (in the capitals/urban centres of the home countries of patients or internationally to a high-resource setting) where multistage treatment is provided (patients can spend months or years away from home). This treatment is often provided by medical teams who have been flown in to endemic countries [30,34]. These models of care have limitations: the COVID-19 pandemic and ensuing travel restrictions have exacerbated and highlighted these limitations as many surgical teams have been unable to travel to these locations, and as a result patients have not undergone the planned reconstructive surgery [56]. This points to the importance of moving away from a vertical, substitution approach (where a small sub-specialized international surgical team spends a short amount of time in a hospital providing only surgical treatment for noma). Instead, horizontal care models focussing on a sustainable approach that builds local surgical capacity and integrates surgical treatment with health promotion, education, preventive and curative services, and appropriate follow-up care are needed.

Cross-cutting initiatives

Recent research has indicated that integrated, cross cutting mechanisms can move past the ‘silo’ of surgical care to the prevention of disease, and, failing that, the early detection and treatment of survivors in the reversible stages of disease [45]. These initiatives can address more than one disease, strengthen reporting structures and upskill human resources in a cost-effective manner. They include improving surveillance of noma at a community level (current surveillance mechanisms are mainly hospital based), more robust health financing systems, and widespread healthcare worker training (including training for traditional healers) [25,35,36]. These components would improve early detection of patients and hopefully speed up access to life-saving treatment in the crucial early, reversible stages of infection.

A further innovative approach would be for epidemiological surveys to be incorporated into routine primary healthcare assessments, vaccine coverage surveys and malnutrition surveys. This inclusion would improve our understanding of the burden and distribution of noma. Such cross-cutting initiatives will need adoption from a range of stakeholders, a further reason to increase awareness about the disease.

RECOGNITION OF NOMA ON THE GLOBAL STAGE

The neglected nature of noma is clear. A 2020 paper argued that this neglect spreads to the detection of noma, prevention, treatment, research and policy on the disease [37]. This neglect can be officially recognized by the WHO by including noma on the list of neglected tropical diseases (NTD) [37,39,40]. There is a unified and concerted effort in support of this initiative from the ministries of health in endemic countries, the various nongovernmental organizations providing care for noma patients, human rights advocates and the noma research community. It is the hope that the addition of noma to the WHO NTD list will raise awareness about the disease and spark research interest, and attract funding for research, treatment and prevention.

In order to increase awareness about this disease, noma should be included in infectious disease and tropical medicine courses globally, as well as nursing, dentistry and medical training courses in endemic countries. Journals and conferences should encourage submissions on noma. This increase in awareness will hopefully lead to more research and a deeper understanding of this neglected disease.

CONCLUSION

This paper provides an overview of the most recent literature on noma. Since noma has largely been neglected in the research sphere, more robust research on the disease is needed. What is clear from the existing literature is that noma is entirely preventable, and its progression can be halted if patients are treated in the early stages of the disease. Treatment for survivors with the later stages of noma remains complex and requires significant human and financial resources. As such, prevention remains key.

Acknowledgements

The authors are grateful to all of the all of the authors who work on noma and add to the scant body of knowledge about this disease. Every study helps. Patient consent has been received forFigs. 1 and 2.

Financial support and sponsorship

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Conflicts of interest

There are no conflicts of interest. The views and opinions expressed in this article are those of the authors and do not necessarily reflect those of the institutions they are affiliated to.

REFERENCES AND RECOMMENDED READING

Papers of particular interest, published within the annual period of review, have been highlighted as:

▪ of special interest

▪▪ of outstanding interest

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Keywords:

cancrum oris; neglected tropical disease; noma

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