World Cleft Coalition International Treatment Program Standards

Abstract

Objective: To present preliminary efforts to establish an internationally agreed set of minimum core practice and best practice guidelines, along with overarching principles to promote safe and comprehensive cleft care globally. Design: Representatives from 6 national and international organizations collaborated to form a World Cleft Coalition. Representatives met monthly/bimonthly to compile standards for safe, comprehensive, and sustainable cleft care. Outcomes were circulated within each organization and to a small subset of external constituents for feedback. Results: A series of overarching principles were established for those involved in International Cleft Treatment Programs, based on the experience of participating organizations. The overarching principles are followed by a structured and detailed Recommended Practice for Ensuring Safe, Comprehensive and Sustainable Cleft Care, which includes minimum core and best practice for the following areas: surgical safety, quality control, patient education, patient selection, patient follow-up, comprehensive care, partnership with the host nations and professionals, training and exchanges for sustainability, and local capacity building. Conclusions: Outcomes aimed to provide a working document to define core principles for safe comprehensive cleft care, while balancing various levels of resources, geographic locations, appropriately trained health care professional specialists, and training limitations. The study highlights the process and benefits to a collaborative international working group not only to establish best practice but also to solicit and engage others in discussion of their experiences with building and supporting safe, high-quality, comprehensive, sustainable, worldwide cleft care.

Adapting cleft care protocols in low- and middle-income countries during and after COVID-19: a process-driven review with recommendations

“…Safety is recognised to be of utmost importance when delivering cleft care (Kassam et al, 2020). The COVID-19 pandemic presents a safety dilemma because of the need to minimise the risk of the virus whilst balancing the risk of cleft treatment delays.…”

“…The structure of this report was inspired by the World Cleft Coalition publication (Kassam et al, 2020) as it was considered a rare example of an international collaborative endeavour in global cleft care and the benefit of a similar format for end user interpretation and application was recognised.…”

“…It is perhaps not surprising that consensus for international standardisation has not been reached for the delivery of cleft care protocols, nor for the assessment of outcomes (Weidler et al, 2021). The World Cleft Coalition, formed from several international NGOs, has published international treatment program standards with a primary focus on the delivery of ethical, safe, accessible and patient-centred care (Kassam et al, 2020). The coalition purposefully did not dwell on protocol technique and timings, due to the well documented controversies in this area, but instead attempted to make balanced recommendations to allow for the levels of resources available locally.…”

“…If untreated, CL/P is highly problematic for children and their families as it gives rise to functional difficulties with speech, eating, social interaction and child development. It is well established that the best way to treat a child born with CL/P is a multidisciplinary team (MDT) of specialised professionals following a protocol of comprehensive cleft care (Kassam et al, 2020). Unfortunately, global inequalities exist, with provision and access to comprehensive cleft care differing depending on geographical location of birth (Sharratt et al, 2020).…”

Sustainable Cleft Care: A Comprehensive Model Based on the Global Smile Foundation Experience

“…The World Cleft Coalition (WCC) is a collaborative initiative launched by prominent NGOs dedicated to international comprehensive cleft care (World Cleft Coalition, 2020), including Global Smile Foundation, Smile Train, Operation Smile, the American Cleft Palate Association, Transforming Faces, and the European Cleft Organisation. The WCC does not present itself as a legal entity but rather as a collaboration of organizations that intend to solicit and engage the discussion of inconsistent standards of care (Kassam et al, 2020). The goal of the WCC is to develop an approved set of international treatment program standards based on the evolving experience of the contributing bodies that include both core practice guidelines and best practice guidelines.…”