Abstract
Background: Spina bifida (SB), a major neural tube defect (NTD), is a leading cause of childhood disability in sub-Saharan Africa, with rising incidence in Zambia. It poses complex medical challenges requiring multidisciplinary care; yet, there is limited demographic and prevalence data on the same, particularly in Zambia.
Aim: To examine the demographic profiles, clinical features, management practices, key trends and care delivery gaps in SB care from 2010 to 2014.
Setting: The study was conducted at two Lusaka hospitals.
Methods: A retrospective study reviewed records with complete data on age, diagnosis, lesion location, residence and treatment. Descriptive statistical analysis was conducted using Statistical Package for Social Sciences (SPSS) version 23.0.
Results: Among 180 cases, 69.4% involved myelomeningocele with hydrocephalus, and 53.3% had lumbar lesions. Females constituted 55.6% of cases. Primary interventions included meningoplasty (61.7%) and Ventriculoperitoneal (VP) shunting (41.7%). Lusaka province accounted for 31.1% of cases, while Muchinga and Luapula had minimal referrals, exposing geographical disparities in access to specialised care. Rehabilitation services were severely underutilised, with only 4.0% receiving post-surgical physiotherapy and limited follow-up care.
Conclusion: The rising prevalence of SB highlights critical gaps in care delivery, particularly in underserved provinces and rehabilitation services. Despite early hospital admissions and surgical interventions, rehabilitation remains severely under-resourced.
Contribution: This study identifies key disparities and underutilised rehabilitation services in SB care in Zambia, offering recommendations to improve referral systems, decentralise specialist care and strengthen multidisciplinary frameworks for equitable healthcare access and better outcomes.
Keywords: spina bifida; myelomeningocele; hydrocephalus; rehabilitation; paediatric surgery; healthcare access; Zambia.
Introduction
Globally, spina bifida (SB) occurs more often in low- and middle-income countries, where the healthcare demands are often quite challenging (Jogi et al. 2023; Mweshi et al. 2015). It is one of the birth defects (BD) of the central nervous system (CNS) and is the commonest of the neural tube defects (NTDs) (Adzick et al. 2011; Fletcher & Brei 2010; Mweshi et al. 2011; Poenaru & Bauman 2011). In sub-Saharan Africa, NTDs are the second most common birth defect, occurring eight times more frequently than in the United States (US) (Jeffrey et al. 2023). The burden of NTDs in developing countries is reported to be twice as high as in developed countries. In Africa, the median prevalence of NTDs is 11.7 per 10 000 births. In addition, it is estimated that among children born with NTDs, over 75% die before the age of five (Ssentongo et al. 2022). Although some reports have shown it to be two times higher, the study done by Tesfay et al. (2023) highlights that the prevalence of NTDs in Ethiopia is seven times higher than in Western countries with effective prevention measures. As a result, SB and hydrocephalus are among the most common and disabling malformations in neonates, particularly in sub-Saharan Africa, significantly impacting child development (Fabian, Doyle & Grand 2010; Jeffrey et al. 2023; Liptak & Samra 2010; Mweshi 2016; Mweshi et al. 2017; Qureshi 2010; Sacko et al. 2010).
While foetal myelomeningocele correction surgeries are available in high- and middle-income countries to improve children’s development and quality of life (Zoghi et al. 2024), such options are often unavailable in African developing countries. Patients frequently present late, many with open and contaminated myelomeningoceles. Economic and social challenges lead to late presentations, malnutrition and sepsis, as reported in Zambia and other African nations such as Nigeria, Cameroon, Kenya and Uganda (Djientcheu et al. 2008; Margaron et al. 2010; Mweshi et al. 2011). Despite the complex management challenges reported across Africa, the aetiology of SB and hydrocephalus remains poorly understood, contributing to ongoing cases. These conditions pose a significant public health burden because of the lifelong management they require (Adeleye & Olowookere 2009; Blenchowe et al. 2010; Warf & Kulkarni 2010). Children with SB often face significant functional challenges, impacting their cognitive and motor skills, which in turn affects their daily activities and social participation (Schoenmakers et al. 2005).
Research indicates that children with SB experience mental function issues, leading to problems with intellectual, language, perceptual, memory, executive and attention skills (Bıkmazer et al. 2022; Lindquist et al. 2022). Reduced motor function further complicates tasks such as dressing, feeding, and mobility, while abnormal bowel and bladder functions contribute to poor hygiene and self-management (Boyer, Yeates & Enrile 2006; Lindquist et al. 2008, 2022; Vachha & Adams 2005). A study assessing determinants of functional independence in 122 children with myelomeningocele found that muscle strength, cognitive ability and mobility independence were critical for daily functioning and quality of life (Schoenmakers et al. 2005). Some people born with congenital conditions or who suffered paediatric illness and injuries may require rehabilitation over their lifetime (Louw & Grimmer 2024). This has been observed to be the case in the management of myelomeningocele requiring surgical closure usually within 72 h of birth and constant clinical and rehabilitation care. This presents challenges of both neonatal and neurosurgical anaesthesia (Hartigan & Walsh 2024). It has been observed that most people can benefit from rehabilitation at some life stage, from improving function after a joint injury, regaining general health after surgery, strengthening muscles after injury or childbirth, providing psychological supports and strategies to address mental health challenges, to dealing with the sequelae of catastrophic and life-changing illness or injury and optimising independence (Louw & Grimmer 2024). In order to meet the demands of functional impact rehabilitation for children with SB, a multidisciplinary team (MDT) comprising neurosurgeons, neurologists, orthopaedic surgeons, urologists, physiotherapists, occupational therapy, paediatricians, neuro-nurses, rehabilitation specialists, psychologists and social workers is cardinal (Hartigan & Walsh 2024; Mweshi et al. 2016, 2017; Tarikul et al. 2024).
Several societal issues and a lack of government support especially in most African countries make the management of SB quite complex because of the fragility, expenses involved and needed human specialisation. Education regarding proper closure techniques in myelomeningocele, preferably using a complete 3-layer closure, is necessary (Jogi et al. 2023). Clearly, neurosurgeons should be knowledgeable about initial closure techniques and the basics of SB management, but must also advocate for the patients outside our immediate scope of care. Neurosurgeons are frequently called upon to play a major role in managing conditions beyond the operative management, including helping governments determine best policy for general public health and welfare. Nonetheless, management of children with SB is usually an uphill battle especially in most African countries because of scanty information on demographic characteristics and reliable prevalence rates (Margaron et al. 2010; Mweshi et al. 2016, 2017). To address the lack of information, we conducted a retrospective study to assess the number of children with SB treated at two specialist centres in Lusaka, Zambia: the University Teaching Hospital (UTH) and Beit Cure International Hospital (BCIH). This study also collected information on the demographic profiles and management practices of these children between January 2010 and December 2014.
Research methods and design
Study design
This was a retrospective study, chosen for its ability to utilise existing medical records, allowing for efficient data collection over a defined period without the need for lengthy follow-ups. The advantages of this design include the ability to assess a large sample size quickly and cost-effectively, as well as the opportunity to examine historical data to identify trends in patient demographics and management practices (Kaplan, Chambers & Glasgow 2015). This approach was particularly beneficial in a resource-limited setting, where prospective data collection might pose significant challenges.
Study setting
The research study was done under the auspices of the UTH and BCIH. Both hospitals are found in Lusaka and are the only centres in the entire country providing free specialised care to children with SB and hydrocephalus. However, the UTH is the largest referral hospital in the country that provides several services to the general public by providing specialised diagnostic and surgical procedures, and also conducts research on commonly occurring diseases in the country. The BCIH is a church-run children’s hospital found in Lusaka with some outreach programmes scattered in the nation providing free services.
Study population and sample
The study population consisted of children with SB managed at the UTH and BCIH between January 2010 and December 2014. Therefore, the patients were purposively sampled, which is based on the characteristics of samples needed (Samure & Given 2008). All the files available in the records department of persons with SB during the period under inquiry were used. Inclusion was based on patients being managed during the time frame stated. Exclusion was based on patient files having inadequate information such as the absence of age on admission, diagnosis, location of SB, province of residence and management notes.
Data collection instrument
A data extraction sheet was developed based on the study objectives, the researchers’ experience and similar instruments used in previous studies (Mweshi et al. 2011; Simpamba, Mweshi & Struthers 2018). The purpose of the extraction sheet was to gather information from patient hospital files. To ensure content validity, the instrument was reviewed by research supervisors and a senior physiotherapist at UTH who did not participate in the study. Feedback during the review process highlighted the need to include additional variables, such as the patient’s birth history, the mother’s age at delivery and folic acid intake. It also recommended integrating the medical and surgical sections into a unified management category encompassing diagnosis and treatment location. Subsequently, a pilot study was conducted using 10 randomly selected hospital files of confirmed SB cases from 2009 to evaluate the instrument’s consistency and practicality for data collection.
Data collection process and procedures
This retrospective study, led by the principal researcher (F.B.), involved a systematic review of medical records from 2010 to 2014 at the UTH and BCIH in Lusaka, Zambia. The data collection process began with formal introductions to departmental heads at both institutions. The study protocol, detailing its aims and significance, was presented to the Physiotherapy Head of Department at UTH and the Medical Superintendent at BCIH. The researcher was subsequently directed to the nursing officer and the records department at BCIH to facilitate access to patient records.
Patient files were organised by year and grouped under neurological conditions, necessitating a thorough examination to identify SB cases. Because of the organisation of the filing system, the researcher reviewed all neurological case files to ensure comprehensive identification of relevant cases. To enhance data completeness, particularly for years with incomplete records, ward admission registers were used to cross-reference and verify patient information. Data extraction was conducted systematically to ensure accuracy and organisation. Files were retrieved in batches of 20 to prevent misplacement and maintain order throughout the process. The principal researcher (F.B.) personally performed all data extraction to ensure consistency and reliability. Relevant information from patient files was carefully reviewed and manually entered into the data collection sheet. This manual entry allowed for greater attention to detail, enabling the researcher to cross-check and verify data during the process, reducing errors and ensuring alignment with the study objectives. Once data were extracted, files were promptly returned to their original storage locations to preserve the integrity of the hospital’s filing system. This structured approach ensured comprehensive and accurate capture of SB cases during the study period.
Data analysis
We employed a two-stage approach. Firstly, raw data was organised and cleaned in Microsoft Excel by author (M.M.M). The data were then transferred to IBM® Statistical Package for the Social Sciences (SPSS), version 23 (IBM Corp., Armonk, New York, United States [US]) for comprehensive analysis, chosen for its advanced capabilities in handling missing data and outlier detection. Secondly, data preparation involved thorough cleaning, validation and coding of categorical variables. Descriptive statistics included frequencies and percentages (with 95% confidence intervals [CIs]) for categorical variables, mean, standard deviation (s.d.), and range for continuous variables. For non-normally distributed continuous variables, median and interquartile ranges (IQRs) were also calculated. Results were presented using frequency tables and summary statistics. The principal researcher (F.B.) supervised the entire process, ensuring methodological rigour and accuracy.
Ethical considerations
Ethical approval to conduct the study was obtained from the Senate Research Committee at the University of Western Cape (UWC 15/4/16) and the ERES Converge Ethics Committee (2015-june-025) in Lusaka, Zambia. Given the retrospective nature of the study and the impracticality of obtaining individual consent from caregivers of patients treated between 2010 and 2014, a waiver of informed consent was specifically requested and granted. This waiver was secured prior to accessing any patient records, in accordance with international research ethics guidelines for retrospective medical record reviews (Vassar & Holzmann, 2013). Institutional permissions were also obtained from the management teams of both the participating hospitals. To ensure patient confidentiality, all data were anonymised during extraction, and no personally identifiable information was included in the analysis. Data storage and handling adhered to strict confidentiality protocols as outlined in institutional guidelines. Overall, these ethical considerations ensured that the study was conducted in a manner that respected patient rights and adhered to established ethical standards in research.
Results
The data review aimed to provide a comprehensive overview of the demographic profiles of children with SB under management from January 2010 to December 2014. Figure 1 illustrates the systematic process of retrieving and reviewing patient data. Initially, 207 patient files were collected; however, 27 were excluded because of inadequate information, such as missing demographic details or incomplete clinical records. This thorough review ensured data quality and relevance, resulting in a final study population of 180 individuals.
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FIGURE 1: Records retrieval and review flow diagram. |
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Demographic characteristics of spina bifida sample at University Teaching Hospital and Beit Cure International Hospital
Table 1 summarises the demographic and clinical characteristics of 180 SB patients treated between 2010 and 2014 (mean year: 2012.1 ± 1.4). Admissions were fairly evenly distributed, peaking in 2013 (25.0%, 95% CI: 18.9% – 32.0%). Most patients were referred from district hospitals (74.4%, 95% CI: 67.4% – 80.6%), followed by health centres (12.8%) and direct contacts (9.4%), with provincial hospitals contributing the least (3.4%). The majority were admitted within their first month of life (73.9%, 95% CI: 66.8% – 80.1%), with a mean age at admission of 2.3 ± 8.7 months, ranging from 1 day to 10 years. The gender distribution showed a slight female predominance (55.6% female vs. 44.4% male). Geographically, most patients were from Lusaka province (31.1%, 95% CI: 24.4% – 38.4%), followed by Southern (18.9%) and Eastern (13.9%) provinces. The lowest representation was from Luapula (0.6%) and Muchinga (0%), as can be seen in Figure 2. Clinically, myelomeningocele with hydrocephalus was the most common diagnosis (69.4%, 95% CI: 62.1% – 76.1%), followed by isolated myelomeningocele (15.6%) and meningocele (14.4%). Spina bifida occulta was rare (0.6%). The lumbar region was the most frequent lesion location (53.3%, 95% CI: 45.8% – 60.8%), followed by lumbo-sacral (26.1%) and thoracolumbar (12.8%). Cervical, sacral and thoracic locations were uncommon, making up less than 8% of cases.
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FIGURE 2: Map showing province of residence of children with spina bifida managed at University Teaching Hospital and Beit Cure International Hospital (2010–2014) in Lusaka, Zambia. |
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| TABLE 1: Demographic characteristics of spina bifida sample at University Teaching Hospital and Beit Cure International Hospital. |
Process of rehabilitation and surgical management
The rehabilitation process at UTH and BCIH for children with SB involves comprehensive care from admission to discharge, with outcomes categorised into surgical, physiotherapy and supplementary management approaches, such as nutritional support, infection prevention, wound care and caregiver education. Meningoplasty was the most common surgical intervention, with 61.7% of children undergoing the procedure. Among those with clubfoot, 10.5% had tenotomies, 42.0% received the Ponseti method, and 17.0% did not require surgery. As shown in Figure 3, approximately 21.0% of the children presented with clubfeet. Ventriculoperitoneal shunting (VPS) was the most common surgical intervention for hydrocephalus, performed in 41.7% of cases. In addition, 43.0% of children with hydrocephalus did not undergo any surgical intervention. Various types of management, including counselling given to caregivers, orthotics, orthopaedic surgery and nutritional counselling, were provided to the children and caregivers and documented in the patient’s records. Among the 180 patients, counselling was the most frequently utilised (60.0%), followed by orthopaedics (7.2%), orthosis (2.1%) and nutrition (1.1%).
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FIGURE 3: Surgical management of hydrocephalus. |
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Physiotherapy intervention and referrals
Table 2 provides an overview of the referral status and common physiotherapy interventions for children with SB at various stages of their treatment. Before surgery, a troubling 96% of children did not receive physiotherapy referrals. After surgery, there was only a slight improvement, with 94% still lacking referrals, resulting in just 6% accessing physiotherapy services. This issue was even more pronounced during follow-up care, where only 2% had access to physiotherapy. Prior to surgery, available interventions included positioning techniques, exercise and basic mobility assistance. These interventions were also applied post-surgery, but the limited and inconsistent availability highlights a continued gap in comprehensive rehabilitation. Follow-up care primarily focussed on educating families about home exercises and providing mobility support, rather than offering structured, ongoing rehabilitation services.
| TABLE 2: Physiotherapy intervention and referrals. |
Trends and gaps in spina bifida management in Lusaka, Zambia
Table 3 highlights a growing prevalence of SB, with Lusaka province contributing 31.1% of cases. In contrast, provinces such as Muchinga and Luapula reported minimal referrals, highlighting significant disparities in access to specialised care. Myelomeningocele was the most common diagnosis (69.4%), frequently associated with lumbar lesions (53.3%). Early intervention emerged as a notable trend, with 73.9% of children admitted within their first month of life. Hydrocephalus was a common comorbidity, reinforcing the need for comprehensive, multidisciplinary approaches to care. However, the findings also reveal substantial gaps in SB management, particularly in service accessibility and rehabilitation. Limited referrals from regions such as Muchinga and Luapula further expose geographical inequities in specialised healthcare availability. Physiotherapy, critical for recovery and long-term outcomes, was severely underutilised. Only 4.0% of children received post-surgery physiotherapy referrals, and follow-up care was minimal.
| TABLE 3: Trends and gaps in spina bifida management in Lusaka, Zambia. |
Discussion
This study aimed to address the significant gap in data regarding paediatric SB rehabilitation in Zambia. By analysing demographic characteristics, clinical features, management processes and trends, the study sheds light on systemic factors influencing access to rehabilitation services and treatment outcomes. The findings have illuminated several critical issues and gaps in care that require urgent attention.
One key finding was that most children receiving care resided in Lusaka province, likely because of the geographical proximity of the specialised hospitals (UTH and BCIH). This observation aligns with trends reported in other studies conducted in Zambia and across Africa (Djientcheu et al. 2008; Mutambo & Siapiila 2021; Jeffrey et al. 2023), highlighting how geographical accessibility facilitates healthcare access. However, it also exposes systemic inequities, as children from rural provinces such as Muchinga remain significantly underserved. Minimal referrals from these regions are attributed to logistical and financial barriers, underscoring the need for decentralised specialised services and financial support for families who need to travel to urban centres. In terms of gender distribution, the study revealed a slightly higher proportion of females, contrasting with earlier studies that reported male predominance (Fieggen et al. 2014; Mutambo & Siapiila 2021). This inconsistency may be because of variations in population demographics, reporting practices or study designs. Therefore, further research is needed to better understand potential gender differences in SB prevalence and their influence on treatment-seeking behaviours.
Regarding clinical features, the age at admission showed that most children presented for care within 4 weeks of birth. This is a promising trend that reflects growing awareness of the importance of early surgical intervention for SB, as timely closure of open NTDs is critical for minimising infection risks and improving neurological outcomes (Mutambo & Siapiila 2021). Nevertheless, delayed presentations remain a challenge, particularly for children from rural areas. This highlights the need for enhanced education and outreach programmes targeting underserved communities to improve early diagnosis and timely access to care. Another notable finding was that myelomeningocele was the most common diagnosis, consistent with global studies (Tarikul et al. 2024). The frequent coexistence of hydrocephalus in 80% – 90% of cases highlights the complexity of managing these conditions, especially in resource-limited settings. These findings emphasise the importance of integrated management strategies that address both the neurological and physical complications associated with SB.
Turning to management processes, the study revealed a significant reliance on surgical interventions such as VPS placement for managing hydrocephalus. While these procedures are critical for reducing mortality and improving outcomes, the findings raised concerns about the underutilisation of physiotherapy services during the rehabilitation process. Before surgery, 96% of children had no physiotherapy referrals, and 94% still lacked access after surgery. Alarmingly, during follow-up care, only 2% of children received physiotherapy. This lack of access to rehabilitation services represents a critical gap in care. Physiotherapy is essential for optimising recovery, preventing secondary complications and enhancing mobility and function. Evidence strongly supports that early and sustained physiotherapy can significantly improve functional outcomes (Hartigan & Walsh 2024). However, the underutilisation of physiotherapy highlights broader gaps in the integration of multidisciplinary care for children with SB.
Effective rehabilitation requires the collaboration of multiple disciplines, including surgeons, physiotherapists, neurologists, occupational therapists and social workers, to address both medical and functional outcomes comprehensively. An MDT approach is crucial for optimising care pathways and addressing the systemic inequities observed in this study, such as geographical barriers and limited follow-up care. Advocacy for MDT models that seamlessly integrate surgical, medical and rehabilitation services, including mandatory physiotherapy referrals, is critical to improving outcomes for children with SB. To address these gaps effectively, improved referral pathways, increased training and availability of physiotherapists, and the integration of physiotherapy into routine care are urgently needed. Strengthening MDT collaborations through regular case reviews, inter-professional training and dedicated referral systems could further bridge these gaps and ensure comprehensive care delivery.
When comparing data across studies, this research suggests an increasing prevalence of SB in Zambia. The number of cases reported exceeds earlier findings (Jeffrey et al. 2023; Lungu 2004; Mutambo & Siapiila 2021). This trend may reflect improved diagnosis and reporting, population growth or an actual rise in incidence because of nutritional, environmental or genetic factors. However, despite these advancements, significant gaps in care delivery persist. Children from rural areas and those requiring post-surgical rehabilitation remain particularly underserved. The lack of physiotherapy referrals and limited access to follow-up care underlines systemic weaknesses within Zambia’s healthcare system. To bridge these gaps, policies promoting decentralised services, community-based rehabilitation programmes and caregiver education are urgently needed. These measures could help ensure equitable access to comprehensive care for all children with SB.
Conclusion and clinical implication
This study highlights critical challenge in the management of SB in Zambia, including disparities in healthcare access, delays in patient presentations and insufficient use of physiotherapy services. The increasing prevalence of myelomeningocele, frequently associated with hydrocephalus, emphasises the pressing need for integrated care systems tailored for affected children. To address these issues, the establishment of satellite healthcare facilities in underserved regions such as Muchinga and Luapula, along with the implementation of telemedicine initiatives, could significantly improve access for rural communities. Furthermore, a holistic approach is necessary, which includes obligatory physiotherapy referrals and specialised training for healthcare professionals in rural areas. Preventive strategies, such as enhanced folic acid supplementation and the creation of a national registry for NTDs, are vital for developing data-driven public health initiatives. In addition, an MDT approach that combines surgical medical, and rehabilitative care is essential for delivering optimal support to children with SB. By integrating physiotherapy into standard care protocols, systemic deficiencies can be mitigated, resulting in better health outcomes. In the future, it is crucial to focus on research and education regarding physiotherapy practices, the effectiveness of telemedicine and long-term treatment strategies. Expanding both undergraduate and continuing education programmes will be essential for improving care delivery. Through these collective efforts, it is feasible to enhance both the accessibility and quality of care for children with SB in Zambia.
Acknowledgements
This article is based on the dissertation of F.B., who pursued a Master’s of Science degree in Physiotherapy at the University of the Western Cape. The authors express their gratitude to the management and staff at both the University Teaching Hospital and Beit Cure International Hospital for their assistance in coordinating the records for this study.
This article is partially based on the author (F.B.) thesis entitled ‘Physiotherapy Management of Spina Bifida in Lusaka, Zambia’ towards the degree of Master of Science in Physiotherapy in the Department of Physiotherapy, University of the Western Cape, South Africa, 2016, with supervisors Margaret M. Mweshi and Nondwe Mlenzana, received 2016; it is available here: https://uwcscholar.uwc.ac.za/items/b2e3e5d7-e712-4014-9567-20a01f04ed6e.
Competing interests
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
Authors’ contributions
All authors contributed significantly to the success of this project. F.B. and M.M.M. prepared the initial draft of the article, while F.B., N.M., and M.M.M. were responsible for the study’s conceptualization and planning. L.A.N. conducted a comprehensive review of the final article, which was subsequently approved by all authors.
Funding information
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Data availability
Data are available from the corresponding author, L.A.N., upon reasonable request.
Disclaimer
The views and opinions expressed in this article are those of the authors and are the product of professional research. The article does not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. The authors are responsible for this article’s results, findings and content.
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