Access to myelomeningocele care in Sub-Saharan Africa

Abstract

Background:

Neural tube defects (NTDs), particularly myelomeningocele, account for one of the highest disease burdens in Sub-Saharan Africa. The pooled birth prevalence of spina bifida on the continent is around 13/10,000 births, with Eastern Africa reaching approximately 33/10,000 and Ethiopia approaching 60/10,000. Myelomeningocele is associated with Chiari II malformation and secondary hydrocephalus in up to 80–90% of cases. Mandatory folic acid food fortification remains unevenly implemented across the continent, with Angola and most Portuguese-speaking African countries (PALOP) lacking such policies. This review aimed to systematically map the determinants of access to surgical treatment for myelomeningocele in Angola and across Sub-Saharan Africa, integrating primary prevention, surgical models, and clinical outcomes.

Methods:

This scoping review followed Joanna Briggs Institute methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews reporting guideline. Ten international and regional databases, together with gray literature, were searched in four languages (English, Portuguese, French, and Spanish) between January 01, 1990 and June 19, 2026. Two independent reviewers conducted study selection and data extraction (Cohen’s kappa 0.82).

Results:

Twenty-eight sources were included (21 primary studies and 7 reviews/reports/gray literature sources). Seven domains of access determinants emerged: geographical, economic, systemic, sociocultural, temporal, follow-up, and primary prevention. Scientific output is concentrated in Eastern and Western Africa, with a near-complete absence of data from the PALOP. Postnatal closure largely occurs outside the optimal 48–72-h window, with median ages at surgery of 7–11 days in series from Nigeria, Zambia, and Ethiopia, hospital mortality between 5% and 15%, and postoperative infection rates between 12% and 30%. Folic acid fortification coverage is heterogeneous: South Africa reduced NTD prevalence by more than 30% after policy adoption in 2003, whereas Angola and most PALOP still lack mandatory fortification.

Conclusion:

Surgical outcomes for myelomeningocele in Sub-Saharan Africa are shaped largely outside the operating theater. They depend on primary prevention, early identification, neonatal surgical capacity, and integrated long-term follow-up. For Angola and other PALOP, generating local primary evidence, evaluating mandatory folic acid fortification, and organizing dedicated neonatal referral pathways are urgent priorities.

INTRODUCTION

Myelomeningocele is one of the most consequential pediatric neurosurgical conditions in subSaharan Africa and, at the same time, one of the least visible in the scientific literature. It is the most severe form of spina bifida, characterized by exposure of neural tissue to the external environment, motor and sensory impairment below the level of the lesion, and the usual association with Chiari II malformation and secondary hydrocephalus. In many African settings, the condition combines high incidence, delayed presentation at first specialist contact, and limited capacity for early surgical management.[19,29,37]

Available data confirm a disproportionate disease burden. The pooled birth prevalence of spina bifida in Africa is around 13/10,000 births.[37] In Eastern Africa, the pooled prevalence of neural tube defects (NTD) is approximately 33/10,000, with Ethiopia approaching 60/10,000 and Malawi reporting figures close to 5/10,000.[4,29] These rates are consistently 4–5 times higher than those observed in countries with mandatory folic acid fortification of wheat and maize flour.[5,15]

Most African series report delayed clinical presentation, with arrival at the referral hospital beyond the optimal window for neurosurgical closure (48–72 h after birth). The study by Idowu and Apemiye in Lagos described a median age at surgery of 11 days, with early neonatal and infant mortality of approximately 22%.[14] In Lusaka, Zambia, the cohort reported by Mubita-Bbalo et al. documented similar delays, sac rupture at presentation, and substantial postoperative infection rates.[21] In Mbale, Uganda, Warf et al., showed that 5-year survival depends heavily on factors that are not strictly surgical: family poverty, distance to the center, and lack of follow-up.[33]

Associated hydrocephalus is the rule rather than the exception. Chiari II malformation is associated with clinically significant hydrocephalus in up to 80–90% of African infants with myelomeningocele, effectively doubling the care challenge: closing the spinal defect in the 1^st days of life and subsequently managing hydrocephalus by ventriculoperitoneal shunting (VPS) or endoscopic third ventriculostomy, either alone or combined with choroid plexus cauterization (ETV/CPC).[8,19,34] The Management of Myelomeningocele Study (MOMS) trial showed that fetal surgery reduces the need for shunting at 12 months by about 40% and improves motor outcomes at 30 months,[1] with measurable benefit persisting into school age.[13] However, the MOMS model requires a level of organization – systematic prenatal screening, a multidisciplinary fetal team, and a tertiary center with a Neonatal Intensive Care Unit (NICU) – that is not replicable across most of Sub-Saharan Africa.

Primary prevention represents the key point of leverage in this field. Evidence accumulated over the past two decades shows that mandatory folic acid fortification of wheat and/or maize flour consistently reduces the prevalence of NTD by 30–70%, with excellent cost-effectiveness.[5,15,16] South Africa, the first African country to implement this policy in 2003, documented a decline of approximately 30.5% in neural tube defect prevalence over the 4 years following its introduction.[27] Globally, the model proposed by Kancherla estimates that only about one quarter of cases of spina bifida and anencephaly preventable by folic acid are currently being prevented through existing programs.[15] In Sub-Saharan Africa, heterogeneous coverage remains the norm, and Angola had not implemented a mandatory policy at the time of this review.

The health-system context in which these patients are treated is highly constrained. In several regions of Sub-Saharan Africa, neurosurgical workforce density is approximately one neurosurgeon per 5–10 million inhabitants.[2,10,31] with most specialists concentrated in South Africa and North Africa. In many countries, care is organized around a small number of centers, often supported by organizations such as CURE International, BethanyKids, and IF Global. Access to intensive neonatal care and safe neonatal anesthesia – indispensable conditions for early defect closure – is particularly limited outside capital cities.

Despite growth in African scholarship on myelomeningocele, there is a geographical gap that cannot be ignored. The Portuguese-speaking African countries (PALOP) – Angola, Cape Verde, Guinea-Bissau, Mozambique, and São Tomé and Príncipe – are almost entirely absent from major regional syntheses on NTD and myelomeningocele treatment. Primary literature from Mozambique is limited to occasional hospital series.[26] For Angola in particular, this review found no primary studies published in indexed databases specifically dedicated to myelomeningocele, which has direct implications for health policy and care organization.

Accordingly, this scoping review aimed to systematically map the literature on determinants of access to neurosurgical treatment for myelomeningocele in subSaharan Africa, with particular attention to Angola and the Lusophone setting. The research question was formulated according to the Population, Concept, Context (PCC) framework: what are the determinants of access to neurosurgical treatment for myelomeningocele in Angola and Sub-Saharan Africa, and how do they interact with primary prevention policies and with the clinical outcomes reported in the literature? The specific objectives were (i) to identify and classify barriers to treatment access; (ii) to map policies and coverage of folic acid food fortification and supplementation in Africa, with a focus on the PALOP; (iii) to synthesize the surgical models described (timing of closure, technique, and management of associated hydrocephalus); (iv) to describe relevant clinical outcomes; (v) to characterize evidence gaps; and (vi) to inventory the instruments used to assess accessibility in this context. The protocol for this review was developed and approved before the searches began and was archived by the research team as the operative reference document.

MATERIALS AND METHODS

Study design

A scoping review was selected and conducted in accordance with Joanna Briggs Institute methodological guidance for this type of evidence synthesis.[23] The conceptual framework followed the original model proposed by Arksey and O’Malley,[3] with the refinements suggested by Levac et al.[17] The manuscript is reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guideline,[30] supplemented by PRISMA-S for the search strategy[24] and PRISMA 2020 for the flow diagram.[22]

Eligibility criteria

Inclusion and exclusion criteria were structured according to the PCC model.

Population

Children and adolescents up to 14 years of age (inclusive) with myelomeningocele, with emphasis on newborns and infants. Studies conducted exclusively in adults and studies focused on occult spina bifida or simple meningocele without a myelomeningocele component were excluded.

Concept

Determinants of access to neurosurgical treatment for myelomeningocele (postnatal closure, fetal surgery in specific series, neurosurgical management of associated hydrocephalus with VPS or ETV/CPC); policies and coverage of primary prevention with folic acid; short-, medium-, and long-term clinical outcomes; and equity of access.

Context

Health systems in Sub-Saharan Africa, with emphasis on Angola and the PALOP, according to the World Bank geopolitical classification.[35]

In typological terms, eligible sources included primary observational and experimental studies, retrospective analyses, cost-effectiveness evaluations, qualitative studies, thematic reviews, institutional reports (World Health Organization, United Nations Children’s Fund [UNICEF], Global initiative for children’s surgery [GICS], IF Global, CURE International, BethanyKids), book chapters, academic theses, and conference proceedings with extractable data. Publications in English, Portuguese, French, and Spanish published between January 01, 1990 and June 19, 2026 were considered.

Sources of information

The search covered seven international bibliographic databases: Medical Literature Analysis and Retrieval System Online (MEDLINE) (via PubMed), Embase, Web of Science Core Collection, Scopus, the Cochrane Library, Cumulative Index to Nursing and Allied Health Literature, and Global Health (Ovid). Given the extent of indexing bias against African literature, three regional databases were also included: African Journals Online, Latin American and Caribbean Health Sciences Literature, and African Index Medicus. To reduce publication bias, gray literature from the World Health Organization, UNICEF, GICS, the International Federation for Spina Bifida and Hydrocephalus (IF Global), CURE International, BethanyKids, the Food Fortification Initiative, the Spina Bifida Association, and thesis repositories (OpenGrey, ProQuest) was consulted. Reference lists of key articles were hand-searched, and field experts were contacted.

Search strategy

The Boolean strategy was iteratively tested and validated by an institutional librarian, based on PRISMA-S recommendations.[24] The search matrix adapted for MEDLINE was as follows:

((“Meningomyelocele”[Mesh] OR myelomeningocele[tiab] OR “spina bifida”[tiab] OR “neural tube defect*”[tiab] OR “spinal dysraphism”[tiab]) AND (child*[tiab] OR infant*[tiab] OR newborn*[tiab] OR neonat*[tiab] OR paediatric[tiab] OR pediatric[tiab]) AND (access*[tiab] OR accessib*[tiab] OR equity[tiab] OR affordability[tiab] OR cost*[tiab] OR “folic acid”[tiab] OR fortif*[tiab] OR prevent*[tiab] OR delay*[tiab] OR transport[tiab] OR distance[tiab] OR referral[tiab] OR follow-up[tiab] OR “loss to follow-up”[tiab] OR workforce[tiab] OR neurosurg*[tiab] OR closure[tiab] OR “surgical timing”[tiab] OR outcome*[tiab] OR mortality[tiab] OR shunt*[tiab]) AND (“Africa South of the Sahara”[Mesh] OR “Sub-Saharan Africa”[tiab] OR Angola[tiab] OR Mozambique[tiab] OR “Cape verde”[tiab] OR “Guinea-Bissau”[tiab] OR “Sao Tome”[tiab] OR Nigeria[tiab] OR Uganda[tiab] OR Kenya[tiab] OR Tanzania[tiab] OR Ghana[tiab] OR Ethiopia[tiab] OR Zambia[tiab] OR Cameroon[tiab] OR Senegal[tiab]))

Selection of sources

Records were exported to Rayyan QCRI, where duplicate records were removed. Title and abstract screening, followed by full-text review, was carried out independently by two reviewers blinded to one another. Prior calibration using 50 jointly assessed records reached a Cohen’s kappa of 0.82. Disagreements were resolved by a third senior reviewer. The entire process was documented according to the PRISMA 2020 flow diagram.[22]

Data extraction

Data charting was conducted using a structured form, piloted in five to ten studies beforehand, which captured metadata, clinical characteristics, surgical modality, management of associated hydrocephalus, determinants of access, and outcomes. Approximately 20% of the final corpus underwent duplicate extraction.

Synthesis of results

The synthesis followed a descriptive and narrative approach,[23] without meta-analysis, given the heterogeneity of the studies. Graphical representations were produced based on the World Bank classification,[35] highlighting inequality between Anglophone and Lusophone countries. The synthesis included a narrative comparison between early postnatal closure, late postnatal closure, and MOMS-style fetal surgery from the perspective of feasibility in Africa.

Narrative quality appraisal

Within scoping reviews, formal risk-of-bias assessment is optional.[23,30] Articles were not excluded on the basis of methodological weaknesses; instead, the limitations of each study were considered at the point at which it was cited in the discussion.

Ethical considerations

This study relied exclusively on the synthesis of publications already available in the public scientific domain. For that reason, it was exempt from formal review by the responsible Institutional Ethics Committee.

RESULTS

Study selection

The search identified 800 records. After removal of 129 duplicates, 671 manuscripts were screened by title and abstract. Of these, 88 articles proceeded to full-text review, and 60 were excluded for the following reasons: inappropriate population (n = 11), setting outside Sub-Saharan Africa (n = 10), absence of data on access or outcomes (n = 16), no pediatric distinction (n = 7), ineligible document type (n = 6), overlapping publication (n = 6), and unavailable full text (n = 4). The final analytical corpus comprised 28 sources of evidence, of which 21 were primary studies and 7 were reviews, technical reports, or gray academic sources. The full pathway is shown in Figure 1.

Figure 1:

Preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews flow diagram of the study selection process for myelomeningocele in Sub-Saharan Africa. PRISMA-ScR: Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews.

Characteristics of the included studies

Retrospective observational cohorts predominated, alongside several relevant prospective hospital series. Five countries accounted for approximately 70% of the studies: Nigeria, Uganda, Ethiopia, South Africa, and Kenya, with important contributions from Zambia, Tanzania, Ghana, and Cameroon. Isolated hospital series were identified in Mozambique, although they were small. Table 1 summarizes the methodological design of each study.

Table 1:

Operationalisation of the research question according to the PCC model (Population, Concept, Context), source types, languages, and time window.

Geographical and temporal distribution

The temporal distribution shows an inflexion point from 2010 onward, with sustained acceleration after 2015, in parallel with publication of the Lancet Commission on Global Surgery and the MOMS trial.[1,20] Figure 2 summarizes the temporal distribution by 5-year period.

Figure 2:

Temporal distribution of included publications on myelomeningocele in Sub-Saharan Africa, by 5-year period (1990– 2026).

The geographical distribution [Figure 3] shows marked asymmetry. Most evidence comes from clearly identifiable regional hubs – Uganda, Nigeria, Ethiopia, South Africa, Kenya, Tanzania, and Zambia. The remaining territories, particularly the PALOP, appear as areas with almost no published output. For Angola in particular, this review identified no primary studies published in indexed databases specifically dedicated to myelomeningocele.

Figure 3:

Geographical distribution of the included studies on myelomeningocele in Sub-Saharan Africa. Lusophone African countries show almost no published output and are highlighted with red dashed lines.

Determinants of access

Analysis of the “Concept” component of the PCC model yielded seven overlapping barrier domains. Figure 4 represents this web of interconnected determinants.

Figure 4:

Radial conceptual map of the seven domains of determinants of access to neurosurgical treatment for myelomeningocele in Sub-Saharan Africa.[18]

Distance and fragile road networks are cross-cutting barriers. Series from Nigeria and Uganda show that rural families travel hundreds of kilometers to reach the only referral neurosurgical center, often in precarious conditions and without the means to return for follow-up.[7,14,33] This geographical dispersion is decisive for newborns with open spinal defects, in whom every hour matters.

The direct costs of postnatal closure, hospitalization, and treatment of associated hydrocephalus, together with the indirect costs of transport, maternal accommodation near the hospital, and loss of income, make the episode financially overwhelming for a substantial proportion of families.[36] In series from Nigeria and Zambia, out-of-pocket costs far exceeded the average monthly income of rural households.[14,21]

System-level weaknesses affect the entire continuum of care. Neurosurgical workforce density is clearly insufficient; access to intensive neonatal care and safe neonatal anesthesia is limited outside capital cities, and there are frequent stock-outs of materials needed for defect closure and for VPS.[10,31,32] Imaging, especially magnetic resonance imaging, is the exception rather than the rule in most public hospitals.

In many settings, the visibility of the spinal defect and subsequent macrocephaly gives rise to social stigma, marginalization of the mother, and attribution of the condition to traditional causes. Traditional medicine is often the first recourse, resulting in delays – sometimes irreversible – before the first contact with the formal health system.[28,32]

The ideal closure window (≤72 h) is rarely achieved. Median ages reported in African series range from 7 to 11 days, with some cases operated on after more than 2 weeks of life.[14,21,33] This interval is associated with a higher risk of infection, sac rupture, and additional neurological morbidity.

Loss to follow-up is one of the most consistent limitations identified across the literature. This is partly due to the parental perception that the child is cured once the lesion has been closed and partly to geographical and economic barriers that make return visits difficult.[33,36] Multidisciplinary follow-up (neurosurgery, urology, orthopedics, rehabilitation) remains, in many African centers, more an aspiration than a structured practice.

Heterogeneity in food fortification and folic acid supplementation policy extends across the continent. South Africa reduced neural tube defect prevalence by more than 30% after adopting its policy in 2003;[27] Nigeria implemented mandatory wheat flour fortification; most PALOP, including Angola, still has no mandatory policy in place.[5,6,15,16] Equity in access to curative treatment for myelomeningocele is therefore, in part, a consequence of equity in access to primary prevention.

Three surgical models are described in the literature from the standpoint of feasibility in Africa: early postnatal closure (<=72 h), late postnatal closure (>72 h), and prenatal fetal surgery according to the MOMS protocol, and prenatal fetal surgery according to the MOMS protocol. Early postnatal closure remains the recommended standard in Sub-Saharan Africa because of its technical and infrastructural feasibility, but it is rarely performed within the ideal window.[14,21,33] MOMS fetal surgery has been shown, in controlled settings, to reduce the need for VPS at 12 months and to improve motor outcomes at 30 months and at school age.[1,11,13] However, under current African health system conditions, it is not a realistic option for routine provision.

Identified metrics and instruments

The literature reveals clear weaknesses in measurement approaches. Most data are collected retrospectively from poorly standardized hospital records and tend to be limited to static kilometer distances between hospitals.[7,14,33] Studies using metrics aligned with proposals from initiatives such as GICS[12] and validated quality-of-life instruments adapted to the African context remain lacking.[36]

One of the most striking findings of this review is the near-total absence of prospective or retrospective studies with substantial cohorts originating from the PALOP. In Mozambique, isolated hospital series were identified;[26] for Angola, Cape Verde, Guinea-Bissau, and São Tomé and Príncipe, no primary studies published in indexed databases specifically dedicated to myelomeningocele could be identified. The contrast with the volume of output from Uganda, Nigeria, and Ethiopia is stark and represents an evidence gap that must be addressed through scientific and institutional initiative.

DISCUSSION

The studies synthesized in this review consistently point to a central reality of myelomeningocele care in Sub-Saharan Africa: outcomes are not determined solely in the operating theater. It is determined beforehand, through primary prevention and the timeliness of referral, and afterward, through the quality of follow-up. This interpretation is consistent with Warf et al.[33] and with Idowu and Apemiye:[14] Delay to surgery, family poverty, and distance to the center weigh more heavily than the technical choice between simple closure and flap closure.

African meta-analyses on neural tube defect prevalence (Ssentongo et al.,[29] Atta et al.,[5] and Atlaw et al.,[4]) reinforce the inverse relationship between coverage of food fortification and folic acid supplementation and the prevalence of spina bifida. Hospital series from Lusaka,[21] Lagos,[14] Mbale,[33] and Zanzibar[25] add the clinical reality to this picture: delayed closure, a high proportion of infectious complications, and prolonged dependence on VPS. The MOMS trial[1] and its 5- and 10-year follow-up studies[11,13] remain the technical benchmark, but in practical terms, they represent a standard that is unattainable in almost all of Sub-Saharan Africa. In recent years, studies such as Bowes et al. on barriers to timely referral have made the organizational dimension of the problem more visible in the indexed literature as shown in supplementary tables 1-4.[7]

A system-level response to myelomeningocele requires three coordinated pillars. The first is primary prevention through mandatory folic acid fortification and supplementation. The second is the capacity for early neonatal closure in centers with NICU support and safe neonatal anesthesia, ideally backed by assisted transport pathways from the provinces. The third is longitudinal multidisciplinary follow-up – neurosurgery, urology, orthopedics, and rehabilitation – capable of keeping the patient connected to the health system throughout childhood and adolescence. The training model of the CURE Hospital in Mbale and the IF Global network illustrate viable pathways for strengthening local capacity in a sustainable way.[12,34]

During the search, a single study published on a nonindexed Angolan portal was identified. It reported a low frequency of congenital malformations of the central nervous system, observed in 5.6% of births (n = 3), with myelomeningocele specifically representing 1.8% of all malformations.[9] This frequency was lower than that found in another study conducted in the same hospital in 2010, in which the frequency was 58.3%, although that latter study was not published or indexed.

The limited volume – and at times the complete absence – of published evidence from the PALOP has concrete consequences. In Angola in particular, no primary studies published in indexed databases specifically dedicated to myelomeningocele could be identified, limiting evidence-based health planning grounded in local data. The absence, at the time of this review, of a mandatory food fortification and folic acid supplementation policy in Angola represents one of the most cost-effective public health measures still to be implemented.[6,15,16] In parallel, the organization of dedicated neonatal referral pathways for open NTD, with assisted transfer to the national reference center within the first 48–72 h, should be an operational priority. The expertise inherited from international collaborations has created the technical capacity for postnatal closure; what is now needed is to articulate that capacity with primary prevention and decentralized follow-up.

The strengths of this review include the linguistic breadth of the search, the systematic inclusion of gray literature (with particular emphasis on IF Global and the Food Fortification Initiative, both highly relevant to this topic), and the attempt to map not only clinical outcomes but also contextual and preventive determinants. Its limitations stem from the scoping review format itself, which does not permit meta-analytic inference, from the heterogeneity of the primary studies, and from the scarcity of reports originating from Lusophone Atlantic Africa.

Prospective clinical registries are needed in Angola and the other PALOP, with rigorous definition of short-, medium-, and long-term outcomes. Cost-effectiveness studies of food fortification and folic acid supplementation tailored to the Angolan context are equally necessary to support policy decision-making.[9]

CONCLUSION

In Sub-Saharan Africa, the treatment of myelomeningocele continues to be determined to a large extent by factors that precede and follow the operating theater: primary prevention with folic acid, the capacity for timely identification and referral, the availability of neonatology and safe neonatal anesthesia, and continuity of multidisciplinary follow-up.

Published series consistently show that delayed closure, family poverty, and geographical dispersion adversely affect both mortality and morbidity. For Angola and the other PALOP, this review highlights three operational priorities: generating local primary evidence; evaluating and implementing mandatory food fortification and folic acid supplementation; and organizing dedicated neonatal referral pathways for open NTD.

To better characterize the Angolan setting, it is essential to develop and validate quantitative instruments to measure intercommunity accessibility in pediatric populations with congenital NTD, which remain largely absent from the African literature as a whole.

Data availability

The extraction matrix, screening record, and list of included sources are presented in the manuscript tables and appendices and may be made available by the corresponding author upon reasonable academic request.

Ethical approval:

Institutional review board approval is not required. This study is a scoping review based exclusively on previously published and publicly available literature (peer-reviewed publications, institutional reports, and gray literature). It did not involve human participants; no patients, families, or health professionals were recruited or contacted; no individual patient data, medical records, tissue, or biological samples were collected or accessed; and no intervention, experimental procedure, or clinical data collection was performed. Under standard international norms for evidence synthesis and the applicable institutional guidelines, research that uses only data already in the public domain is exempt from formal ethics review.

Declaration of patient consent:

Patient’s consent is not required as there are no patients in this study.

Financial support and sponsorship:

Nil.

Conflicts of interest:

There are no conflicts of interest.

Use of artificial intelligence (AI)-assisted technology for manuscript preparation:

The author(s) confirms that they have used artificial intelligence (AI)-assisted technology for Editing/ translation; Image generation.

Supplementary data available at:

https://doi.org/10.25259/SNI_756_2026

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