The unfinished journey: A narrative review of inequities in secondary cleft lip and palate care in low- and middle-income countries

Abstract

Cleft lip and/or palate (CLP) is among the most common congenital anomalies worldwide. While primary surgical repair is essential, comprehensive CLP care also depends on equally important secondary services such as speech therapy, audiologic support, orthodontic care, and revision surgeries. In many low- and middle-income countries (LMICs), these services remain limited or inaccessible, resulting in suboptimal long-term functional, aesthetic, and psychosocial outcomes. Our narrative review searched across PubMed and Embase databases to identify the availability, delivery models, and outcomes of secondary CLP services in LMICs. We found 17 relevant studies and mapped existing evidence, identified key gaps, and explored barriers related to workforce shortages, training, infrastructure, and financial constraints. Our findings highlight the urgent need to strengthen multidisciplinary CLP care pathways beyond primary surgery. Investments in sustainable local capacity, tele-health enabled service models, task-sharing, and community-based interventions are crucial to achieving equitable, high-quality CLP outcomes in resource-limited settings.

Keywords

Cleft lip cleft palate secondary care speech therapy audiology health disparities global surgery barriers low- and middle-income countries

Introduction

Cleft lip and/or palate (CLP) is among the most common congenital anomalies of the face, affecting approximately 1 in every 500–700 live births.¹ CLP compromises nearly all facial functions except vision; impacting feeding, dentition, speech, and hearing. Optimal management requires not only surgery, but speech therapy, hearing aid, and management of otitis, orthodontic care, psychological support, and basic child care, including secondary surgery if required.²

In low- and middle-income countries (LMICs), access to secondary CLP care is often non-existent, constrained by insufficient human resources, infrastructural limitations, and economic barriers, leading to suboptimal long-term outcome.³ Our narrative review aims to examine the extent and nature of these failings and to explore potential solutions.

Methods

A systematic literature search was performed in PubMed, and Embase electronic databases using the following keywords: Cleft conditions (cleft lip, cleft palate), Secondary care services (secondary care, speech therapy, speech-language pathology), Audiology (hearing loss, ENT, otolaryngology), Secondary surgery, Revision surgery, Access and disparity-related terms (health services accessibility, barriers, disparities, inequality, access, availability), Health services needs and demand, Geographical/LMIC indicators (developing countries, low- and middle-income countries, LMIC, Africa, Asia, Latin America, Sub-Saharan Africa, South Asia, Southeast Asia).

Inclusion criteria were as follows: Original article/Opinion/Editorial/Review on Cleft Lip, Cleft Palate, secondary surgery, revision surgery, secondary care, speech therapy, speech-language pathology, audiology, hearing loss,Health Services Accessibility, barriers/disparities/inequality/access/availability/health services needs and demand; in Developing Countries/low- and middle-income countries/LMIC/Africa/Asia/Latin America/Sub-Saharan Africa/South Asia/Southeast Asia/Latin America.

Exclusion criteria were papers from High Income Countries, primary surgical treatment of cleft lip and palate, case reports.

Results

We systematically searched PubMed and Embase electronic databases from 1991 to April 2025, and also searched the reference lists of included studies.

Data extraction, analysis, and synthesis: Our first step in the screening process was carried out by two reviewers (PA and SKY) independently; this involved reading the titles and the abstracts using broad criteria. Each study was coded as eligible, ineligible or doubtful. The full text was then reviewed for articles that were designated as “eligible” or “doubtful” by either reviewer. Disagreements were resolved by discussion amongst all the authors.

A total of 104 articles were retrieved but finally, only 17 studies were included in the qualitative analysis.

Out of these 17, published between 2004 and 2025, 3 were from Uganda and international cohort, 2 from India, Nepal, Nigeria, Laos, and 1 each from Bangladesh, Thailand and the near East. 16 articles were observational studies while one was an interventional study.^4–20 Data extracted included the following: Author (Year), Country/ Region, Study Type, Post-Surgical Barrier(s) and Key Findings (Table 1). Table 1 also highlights that post-cleft surgical care in LMICs is impeded by a recurring constellation of barriers.

Table 1.

Barriers to post-cleft surgery services in LMICs.

Author (Year)	Country/region	Study type	Post-surgical barrier(s)	Key findings
1. Schwarz et al. (2004)	Nepal	Cross-sectional survey	Lack of knowledge, distance, cost, superstition	79% presented late; top causes were unawareness (31%), access (29%), and cost (24%)
2. Aziz et al. (2009)	Bangladesh	Mission-based observational	Late presentation, surgical backlog, lack of local specialists	Adult cleft repair required more complex intervention; highlights need for early detection and local care
3. Reddy et al. (2009)	India	Institutional experience	Poor infrastructure, limited government healthcare capacity, social stigma	Setting up a cleft centre in India revealed systemic challenges in affordability and service delivery
4. Prathanee (2012)	Thailand	Policy/service evaluation	Severe shortage of SLPs, low awareness, poor referral networks	Community-based therapy models proposed for scaling in underserved Thai regions
5. Oladele et al. (2012)	Nigeria	Retrospective review	Late presentation despite free care, stigma, lack of early intervention	24% of CLP patients presented as adolescents/adults; lack of awareness and failed prior interventions were key barriers
6. Lee et al. (2014)	India (Guwahati)	Descriptive institutional review	Limited follow-up, inadequate dental services post-surgery	Transition from mission to permanent cleft care center allowed better longitudinal outcomes and access
7. Massenburg et al. (2016)	Global (multi-regional)	Cross-sectional provider survey (smile train)	Patient travel costs, lack of awareness, lack of financial support	Most common global barriers included travel cost (60.7%), awareness (54.1%), and funding (52.8%)
8. Bruneel et al. (2017)	Uganda	Observational (speech outcomes)	Delayed presentation due to low awareness and financial/travel constraints	Resonance and articulation disorders persisted after delayed palatal repair; emphasizes need for early surgery and speech therapy
9. Pradubwong et al. (2017)	Laos	Workshop-based service evaluation	Lack of surgical tools, limited training, low system capacity	Training enhanced provider knowledge but infrastructure support is needed
10. Alighieri et al. (2019)	Uganda	Pilot study (longitudinal)	Limited access to speech therapy, long travel distances	Intensive short-term therapy showed sustained improvements; supports intensive models in LMICs
11. Lindeborg et al. (2020)	Nepal	Mixed-methods	Family obligations, long distances, lack of SLPs	Task-shifted therapy improved outcomes; barriers include caregiver workload and distance from services
12. Alighieri et al. (2020)	Uganda	Training evaluation (workshop)	Lack of trained SLPs, low professional confidence	Cleft care workshops significantly improved SLPs’ confidence and perceived competency
13. Prathanee et al. (2020)	Laos	Intervention study	No speech therapy professionals, no local infrastructure	Adapted model reduced articulation errors; community-based care feasible in absence of SLPs
14. Kantar et al. (2021)	LMICs (Global smile foundation data)	Survey (workshops)	Financial barriers, lack of multidisciplinary teams	Participants cited funding and lack of team care as main barriers; suggests locally contextualized multidisciplinary model
15. Nabavizadeh et al. (2024)	Eastern mediterranean region	Ecological GBD data analysis	Gender inequality in healthcare access	Burden of OFCs linked to gender inequality; DALYs higher in regions with higher gender disparities
16. Taiwo et al. (2024)	Nigeria (Northwest)	Qualitative study	Poor awareness, financial burden, misinformation, multiple transportation needs	Five core themes identified; recommend community outreach and engagement with religious leaders
17. Belcher et al. (2025)	Global	Perspective/expert opinion	Lack of audiology, OHNS, and speech services; shortage of training programs	Highlights systemic deficits in ancillary CLP care, including ear/speech disorders; recommends simulator training and task-shifting

LMICs: low- and middle-income countries; CLP, cleft lip and palate; SLP, speech-language pathologists; GBD, global burden of disease; OFCs, oro-facial clefts; DALYs, disability-adjusted life year; OHNS, otolaryngology head and neck surgery.

A narrative synthesis was undertaken and the thematic synthesis of these 17 studies showed multiple, interlinked barriers that impede access to comprehensive secondary cleft care across LMICs.The following themes consistently emerged:

High out-of-pocket costs, lack of financial support, and income loss due to travel deter timely access to care.

Long distances, poor infrastructure, and caregiver constraints limit access to surgical and rehabilitative services.

A critical lack of speech-language therapists and audiologists hampers post-surgical rehabilitation.

Low health literacy, misinformation, stigma, and late presentation due to socio-cultural beliefs remain widespread.

Weak referral systems, lack of institutional support, inadequate equipment, and logistical hurdles obstruct continuity of care.

Gender-based disparities affect access and outcomes, particularly for female patients in certain regions.

Reports of successful task-shifting, community-based training, permanent care centers, and media-led awareness strategies.

A Risk Of Bias In Non-randomized Studies of Interventions (ROBINS-I) tool was used.²¹Most included studies demonstrated a moderate to serious risk of bias across multiple domains, particularly in confounding, participant selection, and outcome measurement (Table 2).

Table 2.

Risk of bias in included studies.

Author(Year)	Country/region	Study type	Bias due to confounding	Bias in selection of participants into the study	Bias in classification of interventions	Bias due to deviations from intended interventions	Bias due to missing data	Bias in measurement of outcomes	Bias in selection of the reported result
1. Schwarz & Khadka (2004)	Nepal	Cross-sectional survey	Moderate	Moderate	Low	Low	Moderate	Moderate	Moderate
2. Aziz et al. (2009)	Bangladesh	Mission-based observational	Moderate	Moderate	Moderate	Low	Moderate	Moderate	Moderate
3. Reddy et al. (2009)	India	Institutional experience	INA	INA	INA	INA	INA	INA	INA
4. Prathanee (2012)	Thailand	Policy/service evaluation	Moderate	Moderate	Moderate	Moderate	Moderate	Moderate	Moderate
5. Oladele et al. (2012)	Nigeria	Retrospective review	Moderate	Serious	Moderate	Moderate	Moderate	Serious	Moderate
6. Lee et al. (2014)	India (Guwahati)	Descriptive institutional review	INA	INA	INA	INA	INA	INA	INA
7. Massenburg et al. (2016)	Global (multi-regional)	Cross-sectional provider survey (smile train)	Moderate	Moderate	Low	Low	Moderate	Moderate	Moderate
8. Bruneel et al. (2017)	Uganda	Observational (Speech outcomes)	Moderate	Moderate	Moderate	Low	Moderate	Moderate	Moderate
9. Pradubwong et al. (2017)	Laos	Workshop-based service evaluation	Moderate	Moderate	Moderate	Moderate	Moderate	Moderate	Moderate
10. Alighieri et al. (2019)	Uganda	Pilot study (longitudinal)	INA	INA	INA	INA	INA	INA	INA
11. Lindeborg et al. (2020)	Nepal	Mixed-methods	Moderate	Moderate	Moderate	Moderate	Moderate	Moderate	Moderate
12. Alighieri et al. (2020)	Uganda	Training evaluation (workshop)	Moderate	Moderate	Moderate	Moderate	Moderate	Moderate	Moderate
13. Prathanee et al. (2020)	Laos	Intervention study	INA	INA	INA	INA	INA	INA	INA
14. Kantar et al. (2021)	LMICs (global smile foundation data)	Survey (workshops)	Moderate	Moderate	Low	Low	Moderate	Moderate	Moderate
15. Nabavizadeh et al. (2024)	Eastern mediterranean Region	Ecological GBD data analysis	INA	INA	INA	INA	INA	INA	INA
16. Taiwo et al. (2024)	Nigeria (Northwest)	Qualitative study	Serious	Serious	Serious	Serious	Serious	Serious	Serious
17. Belcher et al. (2025)	Global	Perspective/expert opinion	Serious	Serious	Serious	Serious	Serious	Serious	Serious

INA, information not available; GBD, global burden of disease; LMIC: low- and middle-income country.

Publication bias was not assessed because of the substantial clinical and methodological heterogeneity of selected studies.

Assessment of reliability, validity, and level of evidence was not undertaken as this review was designed to map the existing literature descriptively rather than critically appraise the methodological quality of the included studies.

Statistical analysis was not performed as the qualitative data best answered the research question.

Discussion

Our narrative review underlines that equitable secondary CLP care in LMICs remains largely neglected. Despite progress in primary repair, access to essential secondary interventionsspeech therapy, audiology, and revision surgery, remains severely constrained by the factors previously mentioned, which frequently reinforce one another, leaving many children with preventable speech disorders, hearing loss, malnutrition, and psychosocial difficulties even after successful primary repair.

A key contribution of this review is its focus on the “forgotten part” of cleft care. Cleft management does not end in the operating room; untreated Eustachian tube dysfunction, recurrent otitis media, conductive and sensorineural hearing loss, hypernasality (up to 30%), and severe articulation disorders (up to 94%) all may nullify the benefits of excellent surgery.^22–24

Yet LMICs face stark personnel gaps; there is <1 ENT surgeon per 100,000 people, and in many African countries <1 SLP per 4 million.^25–27 While 65%–70% of children in high-resource settings receive early speech therapy, such services are rare or absent across most LMICs.These challenges are even more pronounced in languages that use click consonants, making timely and sustained speech therapy especially essential. With nearly 250,000 new CLP cases annually, the cumulative burden is profound.^28,29

Although past studies have noted individual barriers (Table 1), none have synthesized the full scope of systemic obstacles to secondary care across LMICs. Our review integrates evidence from Africa, Asia, and Latin America to show that these challenges are not isolated but structurally patterned, and rooted in broader socioeconomic inequities. We deliberately emphasized secondary care, chronically overlooked in policy and literature, despite its central importance for intelligible speech and functional hearing.

Our review also highlights innovative, context-adapted strategies such as task-shifted speech therapy delivered by trained local caregivers,¹⁴ community-based and simulator-based training for ENT and speech care,^16,20 and transitioning from mission-based models to permanent care centers, which tangibly strengthens long-term outcomes.⁹ Locally driven awareness programs, such as partnerships with religious leaders and radio campaigns, also demonstrate promise in prompting timely care-seeking.²⁰

Our review has several limitations. Heterogeneity in study design, geography, and methodology limits quantitative synthesis. The predominance of English-language publications may have introduced language bias, and most studies prioritized provider perspectives rather than patient or caregiver experiences. Many also showed moderate to serious risk of bias (Table 2), and few longitudinal studies assessed long-term outcomes of proposed interventions or reforms.

Even with these limitations, the striking consistency of findings across diverse contexts points to common systemic failures in secondary cleft care. The emergence of low-cost, scalable solutions, such as local caregiver-led speech therapy, community-based outreach, simplified orthodontic devices, and locally produced hearing aids, across multiple countries is encouraging. This is where LMIC health systems may intervene most effectively.

Future research should focus on patient-reported experiences, especially among rural and marginalized families, and evaluate the scalability and cost-effectiveness of care models such as task-shifting, teletherapy, and mobile outreach. Region-specific registries and outcome-tracking mechanisms are needed, alongside workforce mapping for SLPs and ENT specialists to inform strategic investment. Finally, implementation research is essential to transition from fragmented, mission-based programs to sustainable, locally integrated care models.

Conclusion

Secondary cleft care in LMICs requires sustained, system-level reform rather than episodic “breeze-in, breeze-out” surgical missions. Our review shows that persistent gaps in speech therapy, audiology, and follow-up care continue to undermine functional outcomes for thousands of children. Comprehensive cleft care must include speech therapy, audiological support, and revision surgery, and these must be embedded within Cleft Lip and Palate care frameworks in LMICs to ensure meaningful, lifelong impact. Without this commitment, LMIC cleft care will continue to celebrate only surgical beginnings while neglecting the forgotten second half of the smile.

Footnotes

ORCID iDs

Pawan Agarwal

Sanjay K Yadav

Dhananjaya Sharma

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

World Health Organization. International Collaborative Research on Craniofacial Anomalies. who.int. Available at: https://www.who.int/ genomics/anomalies/en/. Accessed October 1, 2020.

Kummer

. Cleft Palate and Craniofacial Conditions: A Comprehensive Guide to Clinical Management. 4th ed. Burlington, MA: Jones and Bartlett Learning, 2019.

Poenaru

. Getting the job done: analysis of the impact and effectiveness of the SmileTrain program in alleviating the global burden of cleft disease. World J Surg 2013; 37: 1562–1570.

Schwarz

BhaiKhadka

. Reasons for late presentation of cleft deformity in Nepal. Cleft Palate Craniofac J 2004; 41: 199–201.

Aziz

Rhee

Redai

. Cleft surgery in rural Bangladesh: reflections and experiences. J Oral Maxillofac Surg 2009; 67: 1581–1588.

Reddy

. Developing and standardizing a center to treat cleft and craniofacial anomalies in a developing country like India. J Craniofac Surg 2009; 20Suppl 2: 1664–1667.

Prathanee

. Development of speech services for people with cleft palate in Thailand: Lack of professionals. J Med Assoc Thai 2012; 95Suppl 11: S80–S87.

Oladele

Olabanji

Awe

. Adolescent and adult cleft lip and palate, in ile-ife, Nigeria. Niger J ClinPract 2012; 15: 403–407.

Lee

Jagtap

Deshpande

. Longitudinal treatment of cleft lip and palate in developing countries: Dentistry as part of a multidisciplinary endeavor. J Craniofac Surg 2014; 25: 1626–1631.

10.

Massenburg

Jenny

Saluja

, et al. Barriers to cleft lip and palate repair around the world. J Craniofac Surg 2016; 27: 1741–1745.

11.

Bruneel

Luyten

Bettens

, et al. Delayed primary palatal closure in resource-poor countries: Speech results in Ugandan older children and young adults with cleft (lip and) palate. J CommunDisord 2017; 69: 1–14.

12.

Pradubwong

Siriporn

Pornpen

, et al. The study of care for patients with cleft lip-palate in champasak, Lao people’s democratic republic. J Med Assoc Thai 2017; 100: S24–S29.

13.

Alighieri

Bettens

Bruneel

, et al. Intensive speech therapy in Ugandan patients with cleft (lip and) palate: a pilot-study assessing long-term effectiveness. Int J PediatrOtorhinolaryngol 2019; 123: 156–167.

14.

Lindeborg

Shakya

Pradhan

, et al. A task-shifted speech therapy program for cleft palate patients in rural Nepal: evaluating impact and associated healthcare barriers. Int J PediatrOtorhinolaryngol 2020; 134: 110026.

15.

Alighieri

Kissel

D'haeseleer

, et al. A cleft care workshop for speech and language pathologists in resource-limited countries: The participants’ experiences about cleft care in Uganda and satisfaction with the training effect. Int J PediatrOtorhinolaryngol 2020; 134: 110052.

16.

Prathanee

Pumnum

Yoodee

, et al. Speech therapy model for patients with cleft palate in Lao people's democratic republic: Lack of speech services. Int J PediatrOtorhinolaryngol 2020; 138: 110366.

17.

Kantar

Abyad

Melhem

, et al. Comprehensive cleft care delivery in developing countries: impact of geographic and demographic factors. J Craniofac Surg 2021; 32: 2041–2044.

18.

Nabavizadeh

Mootz

Nadjmi

, et al. Gender inequality and burden of orofacial clefts in the eastern Mediterranean region: findings from global burden of disease study 1990-2019. BMC Pediatr 2024; 24: 76.

19.

Taiwo

Lehmann

Scott

, et al. Barriers in cleft service access in sub-saharan Africa: a thematic analysis of practical needs of rural families. Cleft Palate Craniofac J 2025; 62: 1219–1227.

20.

Belcher

Patel

Clark

, et al. Addressing cleft care in low- and middle-income countries beyond cleft lip and palate with improvement of otolaryngology, audiology, and speech services. Cleft Palate Craniofac J 2025: 10556656251319649. doi: 10.1177/10556656251319649. Epub ahead of print.

21.

Sterne

Hernán

Reeves

, et al. ROBINS-I: A tool for assessing risk of bias in non-randomised studies of interventions. Br Med J 2016; 355: i4919.

22.

Prathanee

Pumnum

Seepuaham

, et al. Five-year speech and language outcomes in children with cleft lip-palate. J Craniomaxillofac Surg 2016; 44: 1553–1560.

23.

Findlen

Meehan

Allen

, et al.; CORNET Consortium. Current ear and hearing care practices for infants and toddlers with cleft palate in the United States. Cleft Palate Craniofac J. 2024:10556656241283535. doi: 10.1177/10556656241283535.

24.

Shaffer

Ford

Choi

, et al. The impact of tympanostomy tubes on speech and language development in children with cleft palate. Otolaryngol Head Neck Surg 2017; 157: 504–514.

25.

Petrucci

Okerosi

Patterson

, et al. The global otolaryngology-head and neck surgery workforce. JAMA Otolaryngol Head Neck Surg 2023; 149: 904–911.

26.

Wagner

Fagan

. Survey of otolaryngology services in Central America: Need for a comprehensive intervention. Otolaryngol Head Neck Surg 2013; 149: 674–678.

27.

Crowley

Baigorri

Ntim

, et al. Collaborations to address barriers for people with communication disabilities in Ghana: considering the world report on disability. Int J Speech Lang Pathol 2013; 15: 53–57.

28.

Shkoukani

Chen

Vong

. Cleft lip—a comprehensive review. Front Pediatr 2013; 1: 53.

29.

Wehby

Cassell

. The impact of orofacial clefts on quality of life and healthcare use and costs. Oral Dis 2010; 16: 3–10.