Psychosocial aspects of Noma (Cancrum Oris) in sub-Saharan Africa: A scoping review

Background

Noma (cancrum oris) is a neglected destructive, disfiguring disease predominantly of children from an underserved population with multiple indices of social disadvantage such as poverty and malnutrition. ¹ It is estimated that 2–14 per 10,000 children develop the disease in sub-Saharan Africa (SSA), ² with a mortality rate of 90% within two weeks if untreated; this calculates at 1–10 million disability adjusted life years in the region. ² Particularly in the so-called Noma belt, located directly south of the Sahara, the disease has a significant impact. ¹ However, while poverty and malnutrition play a significant role in its aetiology, their effects may be influenced by other factors that are still not fully understood. To explain this phenomenon, some authors have proposed that living with herbivorous livestock may be a risk factor, ³ while others suggest that mechanisms causing gangrene after a bacterial infection may be explained by bacterial genetic factors or the genetic host vulnerability factors but not specifically the bacteria, or perhaps the pattern of prevalence may simply be an epiphenomenon. ¹ In spite of these theories, there are serious psychosocial issues across the whole duration of illness continuum.^4,5

The few studies addressing psychosocial aspects in Noma^4–6 are unanimous in their findings of significant psychological and social issues either as complications of the disease^4–6 or contributing to help-seeking. ⁵ Psychiatric disorders are known to be common among the facially disfigured and have been estimated to range from 30–50% with anxiety-related and depressive disorders being predominant. ⁷ Social problems such as inability to marry, stigma and discrimination are also very common in persons with Noma.^8,9

However, these studies have been described in isolation without any regional integrative analysis, except for one systematic review which included 15 studies focusing on disfigurement. ⁷ Our scoping review sought to answer the question: what is the volume and scope of peer-reviewed articles on psychosocial issues of in SSA?

Review methodology

Scoping reviews are a type of descriptive review intended to map the body of literature surrounding a specific issue. They often have a wider scope than systematic reviews ¹⁰ and can be used to guide future research by pointing out gaps in the body of knowledge as well as to pinpoint topics that may have a substantial body of literature to merit a systematic review. ¹⁰ Our primary goal was to determine the volume of peer-reviewed original research publications on psychosocial concerns of persons with Noma in SSA. We used a methodology, which includes defining the problem (step 1), locating research (step 2), choosing pertinent studies (step 3), charting the data and compiling it (step 4) as shown in Table 1 and summarizing and reporting the findings (step 5). ¹¹ Details of the steps are shown in Table 2 and Figure 1.

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Table 1.

Summary of the articles.

S/no	Author and year	Country	Study characteristics	Summary of findings
1.	Mpinga et al., 2022	Burkina Faso & Niger	The social and financial costs of Noma were calculated. It used three basic methods to determine direct costs (such as medical, surgical, psychological, social, and vocational care, among others). The disease's impact on productivity was used to compute indirect costs.	The direct cost of Noma in Burkina Faso and Niger was 30 and 31 million USD, respectively. In Burkina Faso and Niger, respectively, the indirect cost as a result of lost output was 20 and 16 million USD.
2.	Kagone et al., 2022	Burkina Faso	A semi-structured interview was used in this qualitative study to examine the psychosocial effects of Noma from the viewpoints of survivors, community leaders, and healthcare experts.	Even after surgery, Noma survivors encounter discrimination and shame. The stigma is connected to disfigurement and apprehension about social contagion.
3.	Rickart et al., 2020	Ethiopia	Retrospective study of 80 Noma patients who underwent surgery to determine, among other things, the social issues related to the disease.	The participants’ list of psychosocial issues includes: having been bullied (70.5%), hiding one's face in public (65.4%), withdrawing from social situations (15.4%), and just roughly 19.2% of participants were content with their appearance.
4.	Farley et al., 2020	Nigeria	The study's qualitative methodology was intended to describe the Noma in Nigeria's languages and beliefs. Five focused group discussions with caregivers and 12 in-depth interviews with hospital employees were used in the study. Thematic analysis was employed.	The nomenclature given to the illness by caregivers and medical personnel differed. The titles supplied by the caretakers are a reflection of their worldview and the societal structures that they employ to justify the condition. The majority of the beliefs about causes were supernatural (such as demons, jinn, and God). The belief on causation affected the pathway to care seeking. The participants highlighted the huge mental health and social needs of patients and family members.
5.	Wamba, 2013	Niger	The study examined the possible link between Noma and social practices surrounding childbirth. An ethnographic qualitative method was used, involving four villages with 18 mothers.	They found that socio-cultural practices related to infant feeding practices are insufficient to initiate the disease process.
6.	Yunusa & Obembe, 2012	Nigeria	This was a cross-sectional study to determine the prevalence of psychiatric morbidity among patients with Noma. A General Health Questionnaire was used to ascertain psychiatric morbidity.	A prevalence of psychiatric morbidity of 37% was reported. This prevalence was about three times higher than a healthy control.

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Table 2.

Steps in review methodology.

Steps	Description
Step 1 – Identifying the research question	In order to cover all pertinent publications on the topic, a broad research question was established for this scoping review. What is the volume of research and the scope of published peer-reviewed articles on psychosocial concerns of Noma in SSA?
Step 2 – Identifying relevant studies	All peer-reviewed original research articles published in the past three decades (January 1993 to January 2023) that dealt with psychological and socio-cultural concerns in persons with noma in SSA were searched for individually by each author in PubMed. Moreover, searches were done on African Index Medicus and Google Scholar. We tracked both the forward and backward citations of relevant journal publications. For the Google Scholar searches, Boolean operators were combined with specific subject headings and phrases, such as (psychosocial) OR (psychiatric morbidities)) OR (psychiatric disorders)) OR (depression)) OR (psychosis)) OR (social)) OR (socio-cultural)))))))) OR (anxiety disorders))) OR (body distress disorder)) AND (body dysmorphic disorder))))))))). Using the advanced search option in PubMed, a three-step procedure (the building block approach) was carried out. Initially, each search term and phrase was looked up separately using the MeSH topic title. Second, the history was updated to include the MeSH names and keywords. Lastly, the histories were combined using a chart builder.
Step 3 – Study selection	No article was excluded because of any quality criteria because this was only a scoping review. Case studies, review articles, theses, and conference reports/abstracts were not accepted, nevertheless. Five duplicate articles were sorted out after the import of the citations into EndNote. After deleting duplicates, relevant publications were found, and they were examined for additional qualifying requirements (Figure 1). Each title and abstract were individually reviewed for inclusion by the authors (JUO, DOA, and CNO). In cases where a choice could not be made at this point, the entire article was read before a choice was made. At a joint conference of the authors, the final papers included for this review were harmonized by consensus. The authors reviewed the entire texts of all papers that satisfied the inclusion requirements. Figure 1 depicts the flowchart for the article selection procedure.
Step 4 – Charting the data	The authors (JUO, DOA & CNO) decided to describe the results without categorizing them into topic groups because the volume of articles was so tiny after compiling and reading through the entire texts of all qualifying papers. The first author's name, the year of publication, study details, and a summary of the key findings were all collected from each included article by the authors, as shown in Table 1
Step 5 – Synthesis of findings	Each author examined the publications and used a single sentence to describe the main findings (i.e., a code). Each author independently created a summary of their findings, which were later harmonized in numerous consensus discussions held via a virtual platform. It was determined by consensus what should be reported in the current review after the findings from each article as presented by its authors were examined for consistency with the data presented in the tables or figures within the study

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Figure 1.

Articles selection process.

Results

A total of six studies including a total of 220 patients with Noma that satisfied the criteria for inclusion (i.e. peer-reviewed original articles published in SSA on the topic) covering four of the 46 SSA nations, namely Burkina Faso, Niger, Nigeria, Ethiopia, and both Niger and Burkina Faso, three studies are qualitative, two cross-sectional and one retrospective. Key conclusions are: (1) one-third experience significant psychological distress ⁵ ; (2) social issues such as bullying, social exclusion and isolation are frequent^9,12; (3) the disease has significant social and economic costs, with lost productivity estimated between 16 and 20 m US$ ⁶ ; and (4) many patients and caregivers are involved.

Discussion

The prevalence of substantial psychological distress was found to be 37% in those with Noma who had psychiatric illness. According to this, one out of every three people with Noma is suffering from a serious mental illness. This highlights the necessity of enshrining mental health screening in those who have this illness, which is currently not the case in the majority of SSA nations. The effectiveness of Noma treatment is also significantly impacted by psychological distress. ² In this patient population, deformity on the one hand causes psychological anguish, and on the other, psychological discomfort may cause delayed seeking of care, a reduction in recovery and a reduction in rehabilitation. ²

This review also brought attention to some socio-cultural effects on individuals with Noma in SSA. Marriage-related problems, bullying, stigma and social exclusion are regularly reported consequences of the illness, and supernatural influences are frequently shown to be the cause. The abundance of social issues detailed in this research further supports the idea that people with Noma should be assessed and treated using the biopsychosocial model. ¹³ The idea that diseases in the SSA are caused by supernatural forces is not unusual, but it has significant detrimental effects on how people receive care because the type of assistance requested depends on how the ailment is perceived by the person. ¹⁴

Future research in psychology of Noma should focus (1) a need to describe the various psychological disorders using rigorous methodology, using, for example, diagnostic instead of screening tools used in previous studies. For primary mental health preventive programmes, longitudinal studies assessing the efficacy of early psychosocial interventions across the disease continuum would be required. Such research, given the recent move to list Noma as a neglected tropical disease, should stimulate this. ¹⁵ Secondly, studies on social support and religiosity as a coping resource and how the socio-cultural milieu mediates the pathway to care are necessary. Thirdly, studies that test various models to implement the integration of interventions such as screening, treatment, follow-up and referral for psychosocial problems. Finally, treatment outcomes (e.g., response, remission, and recovery), functional and quality of life need to be investigated to determine that interventions are successful.