Addressing Cleft Care in Low- and Middle-Income Countries Beyond Cleft Lip and Palate with Improvement of Otolaryngology,Audiology,and Speech Services

Abstract

There are many barriers patients and families face in low- and middleincome countries (LMICs) to just receive the initial surgical care for their cleft lip and palate (CLP). Cleft lip/palate care encompasses much more than just the initial primary repairs, especially in the realm of otolaryngology, audiologic health, and speech language pathology. LMICs face many disparities in training and surgical care for secondary cleft surgeries, and addressing these disparities and creating solutions is paramount for the future of CLP patients globally. This editorial aims to highlight these disparities and pave a path forward with solution-based discussions.

Introduction

There are many barriers patients and families face in low- and middle-income countries (LMICs) to just receive the initial surgical care for their cleft lip and palate (CLP).^1,2 In addition to a paucity of trained medical specialists, the barriers often include patient travel costs, lack of financial support, or lack of patient awareness.^1,2 Cleft care encompasses much more than just the initial primary repairs; so, how well is the ancillary care for these patients, such as velopharyngeal dysfunction (VPD), hearing loss, or otitis media, being managed in LMICs? A recent study showed that the otolaryngology – head and neck surgery (OHNS) workforce is considerably less than 1 per 100 000 population in LMICs compared to over 5 per 100 000 in high-income countries. ³ Petrucci, et al. (2023) study showed that OHNS is responsible for otologic care in 80% of the LMICs surveyed as well as shouldering responsibility for 20% of the CLP care. ³ Another survey study in 2013 looking at the OHNS, audiologic and speech language pathology (SLP) workforce in Central America showed 4 out of 6 countries had less than 15 total audiologists for their entire countries and only 1 out of 6 countries had more than 1 SLP per 100 000 population. ⁴ Only Costa Rica and Panama had audiology and SLP training programs. ⁴ While limited audiologic and speech services for an entire country is detrimental, it is amplified in the CLP population given their predilection for prolonged eustachian tube dysfunction (95%-100%), sensorineural and conductive hearing loss, hypernasality prevalence over 30%, and articulation defects as high as 94%.^5,6 We aim to address these disparities in availability and treatment of ancillary CLP care and provide possible solutions to improve this issue for patients globally. Communication services of hearing and speech are all intertwined with OHNS care, so it is important not to just focus on one disparity in this group.

Delivering global healthcare to LMICs is an evolving and multifaceted process, shaped by the unique needs and challenges of each nation. Unlike a one-size-fits-all approach, successful global health initiatives require flexibility, adaptability, and an understanding that the “asks” from each country may vary significantly. It is undeniable that there is a worldwide paucity of national programs that aim to train professionals to mentor and supervise personnel within the clinical context. Depending upon the local educational resources, all overarching goals would aim to locally educate, empower and equip personnel to fill the necessary local voids in trained medical personnel.

Otolaryngology

When it comes to OHNS CLP care, there are two big issues we believe need to be addressed to improve the ancillary care of CLP patients, which are 1) increasing qualified OHNS surgeons in LMICs through local training programs and 2) improving CLP education and surgical skills through teaching and local surgeon empowerment.

One key component of creating a sustainable healthcare system in these contexts is recruitment and support of young local surgeons. Often, additional funding from nonprofits is necessary to enable local surgeons to dedicate the time needed to acquire new skills. This investment is crucial in building a competent and confident local workforce capable of maintaining and advancing the ancillary CLP care needed. One recent study showed otitis media (OM) to be prevalent throughout Africa in 8% of children with cleft palate as the strongest predictor (OR 5.2). ⁷ If chronic OM is not addressed with ear tubes by qualified OHNS, children are at high risk of life-long hearing loss and speech dysfunction. And beyond that, children with CLP have prolonged eustachian tube dysfunction, often necessitating tympanoplasties or even bone-anchored hearing devices. The otologic issues alone in children with CLP emphasize the importance of improving OHNS workforce in LMIC.

Petrucci et al. ³ recommend addressing the OHNS workforce shortage in a couple of ways. First is through a task-sharing model with strategies to train general practitioners, nurses, and community health workers to provide some level of care for conditions of the head and neck. ³ This may be difficult for the surgical aspects of OHNS’ CLP care but can certainly address some of the audiologic and speech/language aspects. Second is financial and time investment into OHNS training programs in LMICs. ⁴ OHNS could adapt other models of training expansion in LMICs that have been shown to be successful, such as in anesthesia.^8,9

Lastly, sustainable opportunities for training and teaching for LMIC surgeons to enhance and hone surgical skills are paramount. Global Smile Foundation is a nonprofit organization that has shown considerable benefit for hosting hands-on simulator training for cleft surgeons and SLPs in LMICs. ¹⁰ Simulator training allows for real-time feedback and guidance through procedure and has been shown to build confidence and improve overall performance. ¹⁰ While the aforementioned simulator training workshop was for primary cleft surgery, simulator training models have increased in demand and availability and there is ample opportunity to introduce simulators for otologic skills such as myringotomy tube placemen or temporal bone drilling that have been validated to increase the confidence and surgical skills of cleft surgeons and otolaryngologists in LMICs.^11,12 The knowledge exchange in a collaborative environment of simulator hands-on surgical education cannot be understated.

Audiology

Perhaps the greatest challenge, in addition to creating sustainable audiology training programs is: identifying and empowering the potential local audiological work force while also equipping the workforce with the necessary sensitive technical equipment (that minimally requires annual servicing and calibration). Afterall, data fallaciously suggesting individuals have normal/near normal hearing who in fact have hearing loss (ie, false positive); or incorrectly dismissing those with hearing loss whose findings suggest normal hearing levels (ie, false negative). In the context of CLP care, a child could be dismissed from otolaryngological and/or audiological treatments due to fallacious findings that suggest normal (or abnormal) middle ear function and normal (or abnormal) hearing capabilities. Not only would local community trust in medical personnel erode, but more harm could result in untreated pathology (false negative) for those with conductive hearing loss or unnecessary treatment provided (false positive) for those with no conductive sequelae.

Disparities in audiologic care for LMICs can affect all of those with hearing loss in a country, especially since hearing loss is known to disproportionally affect LMICs. ¹³ When it comes to the CLP population, the question must be asked “are we doing enough if a child's cleft palate or cleft lip is repaired but their hearing loss is not addressed?”. The incidence of OM in children with CLP is over 90% and is known to be more common and persistent for longer into childhood when compared to children without cleft ¹⁴ If OM is not addressed through myringotomy tube placement (OHNS) or hearing aids, the coinciding conductive hearing loss can have profound negative impacts on speech and language development, academic achievement, and future financial independence. ¹⁵ Syndromic CLP can also carry the risk of sensorineural hearing loss where access to hearing screening and hearing aids is vital. ¹⁵

Equipped personnel can easily become an undeniable asset within the community. An educational “Triad” would aim to: equip community trained personnel to clinically engage with unique populations; maintain all historic and current clinical documents; ensure all equipment calibration is completed annually and maintain scientific standards. Hearing screening programs are paramount to be developed in LMICs and in settings with limited audiologic professions, community-based initiatives or school-based screenings with task sharing is recommended. ¹⁶

Speech

Even following a high-quality surgical repair and comprehensive interdisciplinary care, children with CLP often continue to experience speech disorders. Recent studies indicate that between 65% and 70% of children with CLP have received speech therapy by the age of five, underscoring the importance of accessible, high-quality speech therapy.^17,18 However, many regions lack sufficient cleft-trained speech-language pathologists (SLPs) to meet the need, and in some areas, the SLP profession does not exist at all. ¹⁹ In 2024, an informal survey assessed the number of practicing SLPs in six African countries—Ghana, Kenya, Nigeria, Rwanda, Tanzania, and Uganda. ²⁰ The findings showed that the country with the highest number of SLPs (80) had only 0.174 practitioners per 100 000 people, while the country with the least (3) had fewer than 0.025 per 100 000.^20,21 In contrast, the USA has over 48 SLPs per 100 000 people, highlighting the significant disparity in trained SLPs in LMICs worldwide.^22,23

The medical mission model has gained popularity as a means to address healthcare disparities in LMICs, particularly for CLP care. However, this approach presents several challenges that hinder its effectiveness and can interfere with an LMIC's ability to provide CLP care in the long term. Short-term visits by volunteer teams often result in a lack of continuity of care and follow-up services and are not compatible with disciplines such as speech therapy which require regular, ongoing visits. Additionally, the limited training provided for local care teams can leave them unprepared to manage complex cases after the missions depart, creating dependency on external aid rather than fostering sustainable healthcare systems. ²⁴ If speech services are going to be provided on short-term visit there are a multitude of resources online for language specific strategies and Smile Train –the world's largest cleft charity—has these resources on their website for a wide variety of languages (30+) including Spanish, Hindi, French, Mandarin, Portuguese, among others. ²⁵ These are accessible for the local SLPs and community providers as well. If these short-term models are continued, it should be noted that they often still do not address ongoing support or mentorship for the local SLPs or medical providers to create sustainability and would encourage those involved in these trips to integrate long-term initiatives if possible.

Recognizing the limitations of the medical mission model, Smile Train also addresses the shortage of trained providers and accessible cleft care in LMICs by partnering with local hospitals and medical teams. By funding education, training, and resources for local cleft professionals of all disciplines—surgeons to audiologists to SLPs—Smile Train strengthens local capacity and infrastructure, enabling them to treat patients in their own communities. ²⁶

In the area of speech care, effective sustainable solutions supported by Smile Train in recent years include the development of cleft speech assessment/treatment materials in local languages, integration of cleft speech coursework into local SLP university programs, and the creation of a structured, virtual cleft speech mentorship program for SLPs in LMICs.^27,28 Initiatives focused on education and training empower local medical professionals with the skills to provide high-quality cleft care, promoting sustainable, cost-effective treatment while fostering long-term sustainability in healthcare systems. This model is a strong avenue to improve the disparity of trained SLPs while also filling in the knowledge gap of CLP-specific speech issues as LMICs, where very few SLP programs require a formal course in cleft speech therapy. ²⁸

Conclusion

As global surgery continues to advance and advocate for addressing the primary surgical needs for patients with CLP, we want to ensure that the whole spectrum of CLP care is elevated and addressed. Otologic, audiologic, and speech/language development are important components on the full development of patients and should not be neglected. With acknowledgements on the disparity of professionally developed programs in LMICs one proposal to address this is through task-sharing models with strategies to train general practitioners, nurses, and community health workers to provide some level of care for CLP conditions. Otologic simulator training for LMIC surgeons is also an untapped option for further training of the local providers that allows for real-time feedback and guidance. Continuity of care and sustainability for programs to empower and train the local caregivers for more than just the primary cleft lip and palate surgery is paramount for sustained success for the future of CLP in LMICs.