Orofacial clefts in low‐ and middle‐income countries: A scoping review of quality and quantity of research based on literature between 2010‐2019

Sarilita, Erli; Setiawan, Asty Samiaty; Mossey, Peter

doi:10.1111/ocr.12458

Cited by 9 publications

(7 citation statements)

References 17 publications

(45 reference statements)

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“…Previous study exhibited great inequalities in HIC versus LMIC peer‐reviewed publications in cleft field over the last 10 years 8 . Like other areas of medical research, cleft research is also characterized by inequalities between HIC and LMIC due to differences in various aspects but mainly in research capacity and infrastructure of comprehensive data of birth defect surveillance systems.…”

Section: Discussionmentioning

confidence: 99%

Scoping review of outcome measures in cleft care used in research and reports

Sarilita,

Sjamsudin,

Mossey

2023

Orthod Craniofacial Res

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Treatment outcome measures are critical in the decision making of best practices in the OFC field. OFC consortium working groups provided standardization of outcome measures based on previous treatment outcome studies. However, the implementation of such standardization in OFC centres worldwide is unknown. This study presented mapped outcome measures in cleft care using a structured review method complemented by quantitative overview of the relevant published research to provide initial guidelines for the implementation of treatment outcome standardization. A scoping review of the literature of treatment outcomes in cleft care following Preferred Reporting Items for Systematic reviews and Meta‐Analyses extension for Scoping Reviews guidelines was performed. The selected indexed paper in outcome measures mapped following the international consortium in standard set of outcome measures in cleft care. Three hundred and sixty‐five articles were filtered. The most discussed domains of cleft care were dental and oral health, appearance and speech/communication. Overall, the majority of publications were produced in high‐income countries. The current review indicates that there are inequalities of treatment outcome studies among the domain of cleft care. In addition, there are also inequalities of published articles from HIC versus LMIC in treatment outcomes. This information can be used to develop targeted interventions aimed at encouraging cleft centres worldwide to adapt standardized outcome measures.

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Section: Discussionmentioning

confidence: 99%

Scoping review of outcome measures in cleft care used in research and reports

Sarilita,

Sjamsudin,

Mossey

2023

Orthod Craniofacial Res

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“…4 A study which mapped the OFC research in indexed literature found inequalities in terms of number of publications produced in HIC and LMIC. 5 These discrepancies may be attributed to a lack of research expertise and insufficient emphasis from governmental research funders on prioritizing OFC research.…”

Section: Introductionmentioning

confidence: 99%

Age at primary surgery among orofacial cleft individuals in Indonesia

Sarilita,

Rafisa,

Desai

et al. 2023

Orthod Craniofacial Res

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ObjectivesTo observe the age at primary cleft surgery among charity organizations such as Smile Train in helping Indonesia manage patients with OFC.Materials and MethodsA retrospective analysis of medical records was conducted to identify patients with orofacial clefts who underwent primary surgery between 2001 and 2021. The age at the time of surgery was recorded for each patient. Descriptive statistics were used to analyse the data and determine the average age at primary surgery.ResultsIn the period between 2001 and 2021, a total of 34 239 individuals in Indonesia underwent primary lip surgery, while 16 768 individuals received primary palatal surgery, as recorded in the Smile Train database. Notably, a significant proportion of these surgeries were classified as delayed primary repairs. Approximately 65.3% of primary lip surgeries were performed beyond the recommended timeline of 6 months of age, indicating a delay in the surgical intervention. Similarly, 67% of primary palatal surgeries were also delayed, occurring after the recommended timeline of 18 months of life.ConclusionsThis study provides insights into the age at primary surgery among individuals with orofacial clefts in Indonesia. The findings highlight the need for timely intervention and the importance of considering individualized treatment plans based on the specific type of orofacial cleft. Further research is warranted to explore factors influencing the age at primary surgery and their impact on treatment outcomes and long‐term functional outcomes in this population.

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“…Patients with cleft lip and palate (CL/P) require a complex and multidisciplinary approach to care that makes sustainable access in low-and middle-income countries (LMICs) challenging. 1 CL/P represents the most common congenital craniofacial deformity with a global prevalence of one in 1000 to 1500. 2,3 It has been well demonstrated that a child on the cleft care continuum should receive care and support at every point in their development to address the complex medical and surgical needs as they reach adulthood.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of Global Cleft Care Initiatives Among the Top Searched Low- and Middle-Income Countries

Reddy

Shah

Weissman

et al. 2023

The Cleft Palate Craniofacial Journal

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Objective International outreach for cleft lip and/or palate care has traditionally been characterized by foreign groups and individuals holding surgical outreach trips in low- and middle-income countries. However, this “magic bullet” approach has often been criticized for prioritizing short-term results that may disrupt local workflow. The presence and impact of local organizations that support cleft care and take on capacity building initiatives has not been well explored. Design Eight countries previously studied as having the highest Google search demand for CL/P were chosen for the scope of the study. Local NGOs in regions were identified through a web search, and information was collected regarding the location, objectives, partnerships, and work conducted thus far. Results Countries with a strong combination of local and international organizations included Ghana, Philippines, Nepal, Kenya, Pakistan, India, and Nigeria. The country with minimal to no local NGO presence included Zimbabwe. Local NGOs often supported education and research, training of providers and staff, spreading community awareness, offering interdisciplinary care, and opening cleft clinics and hospitals. Unique initiatives included starting the first school for children with CL/P, enrolling patients in the national healthcare to cover CL/P care, and monitoring the referral system to improve efficiencies in the healthcare system. Conclusions Moving towards a mindset of capacity building not only involves bilateral partnerships between international host sites and visiting organizations, but also collaboration with local NGOs that have a deep understanding of local communities. Successful partnerships may help address the complex challenges regarding CL/P care faced by LMICs.

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Orofacial clefts in low‐ and middle‐income countries: A scoping review of quality and quantity of research based on literature between 2010‐2019

Cited by 9 publications

References 17 publications

Scoping review of outcome measures in cleft care used in research and reports

Scoping review of outcome measures in cleft care used in research and reports

Age at primary surgery among orofacial cleft individuals in Indonesia

Evaluation of Global Cleft Care Initiatives Among the Top Searched Low- and Middle-Income Countries

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