International Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies Task Force Report: Holistic Outcomes

2014 ◽  
Vol 51 (6) ◽  
pp. 130-134 ◽  
Author(s):  
Hillary L. Broder

Objective This paper describes the process and outcomes of the 2013 American Cleft Palate-Craniofacial Association task force on Holistic Outcomes. The goals and membership of the task force are presented. Methods Using internet communication, the group introduced themselves, shared ideas and information related to holistic assessment and implementation of using a validated holistic measure, the Child Oral Health Impact Profile (COHIP) at participating international sites. Results Data from the sites were analyzed using descriptive statistics. Administration of the COHIP was successful. It varied from self-completion as well as verbal presentation due to language differences and a function of the short time period to complete collection. Additionally qualitative comments were reported by the task force site directors. Conclusions Future directions for holistic assessment and communication among task force members and sites were discussed at the Congress and are presented in this report.

2014 ◽  
Vol 51 (6) ◽  
pp. 146-155 ◽  
Author(s):  
Gunvor Semb ◽  

The assigned objective for the Task Force Beyond Eurocleft was “to make recommendations for initiations of local and/or participation in multi-national cleft outcome studies and consist of individuals from the European experience with cleft outcome studies (Scandcleft, Eurocleft) and those who have initiated, or intend to initiate, similar studies in other geographical areas.” By May 2013 the Task Force (TF) consisted of 183 members from 59 countries. It was agreed that this initiative should be truly global and include all cleft specialties as well as representatives from cleft support groups in recognition of the huge commitment for improving cleft care worldwide. The vision for this group is to build a dynamic, well-functioning TF that will work globally and be multidisciplinary with inclusive and respectful behavior to improve care for all individuals born with cleft lip and/or palate. As there is a large diversity in needs and interest in the group a range of parallel approaches would be required depending on the experience, resources, and challenges of regions, teams, and individuals. Important ideas for future work were: (1) Work on a global survey of access, existing outcome studies, current collaborations, and lessons learned. (2) Work towards the creation of a lasting, living resource for newcomers to intercenter collaboration that is kept fresh with new reports, copies of relevant publications, model grant applications, and a list of volunteers with the right experience to provide support and guidance for new initiatives. (3) Develop simple online training modules to provide information about the benefits and principles of multidisciplinary care, collaborative data collection and auditing short and longer-term outcomes. (4) Establish subgroups that will work within all regions of the world with regional and national leaders identified. An evaluation of current standards of care should be undertaken and country/region specific remedies to optimize treatment outcome suggested. (5) Reach agreement on minimum standards of care, minimum record collection, and reach consensus on simple outcome measures in all disciplines. This should include all cleft types and all ages. These standards could be used to encourage governments to fund multidisciplinary care. (6) Teams will be encouraged to start and continue recordkeeping using simple and agreed protocols, according to agreed standards of minimum records and later share their data with other teams and then, embark on outcome studies. (7) Teams already active in research should: Create a register for cleft professionals and teams to reach agreement of contemporary and comprehensive multidisciplinary outcome measures, explore the possibilities using modern technology and plan large multi-national studies. A patient/parent centered data collection should always be included. These studies need funding. One task could also be exploring whether health care at a distance could be initiated using new technology.


2014 ◽  
Vol 51 (6) ◽  
pp. 138-145 ◽  
Author(s):  
David A. Fitzsimons ◽  

This paper describes the outcome of the “Speech Assessment” Task Force of the 12th International Congress of the Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies, held in 2013. This task force attempted to identify a draft set of professional competencies required by speech professionals for the perceptual evaluation of cleft palate speech. The task force also generated a series of general and competency-specific questions that could be useful in subsequent evaluation and study of these competencies, particularly in regards to the application of these competencies to cross linguistic speech assessment. Further review and revision of these competencies is recommended.


2014 ◽  
Vol 51 (6) ◽  
pp. 122-128 ◽  
Author(s):  
Brian C. Sommerlad

Introduction The benefits or otherwise of late palate repair in older children or adults are uncertain. The outcomes, particularly without appropriate speech therapy, are often disappointing. The issue is of special importance in the poorer countries where these patients are most commonly seen and where limited capacity and facilities may have to be rationed. Method A task force was set up to report back to the International Congress in Orlando in May 2013. The chairman and some members were nominated by the organizers and further members were added during the discussion process. Some of the members had considerable experience of late palate repair. The task force compiled a report after 9 months of e-mail correspondence. The report includes reports of some previously unpublished studies. A summary of the report was presented at Cleft 2013 in Orlando. Conclusions There was a general consensus that late palate repair is of benefit for many patients and that, even if normal speech is not attained, outcomes are positive. Outcomes depend on the age of the patient (the younger the better), on the skill of the surgeon and, ideally, on the availability of appropriate speech therapy. A protocol for a prospective international multicenter study is proposed.


2019 ◽  
Vol 4 (5) ◽  
pp. 878-892
Author(s):  
Joseph A. Napoli ◽  
Linda D. Vallino

Purpose The 2 most commonly used operations to treat velopharyngeal inadequacy (VPI) are superiorly based pharyngeal flap and sphincter pharyngoplasty, both of which may result in hyponasal speech and airway obstruction. The purpose of this article is to (a) describe the bilateral buccal flap revision palatoplasty (BBFRP) as an alternative technique to manage VPI while minimizing these risks and (b) conduct a systematic review of the evidence of BBFRP on speech and other clinical outcomes. A report comparing the speech of a child with hypernasality before and after BBFRP is presented. Method A review of databases was conducted for studies of buccal flaps to treat VPI. Using the principles of a systematic review, the articles were read, and data were abstracted for study characteristics that were developed a priori. With respect to the case report, speech and instrumental data from a child with repaired cleft lip and palate and hypernasal speech were collected and analyzed before and after surgery. Results Eight articles were included in the analysis. The results were positive, and the evidence is in favor of BBFRP in improving velopharyngeal function, while minimizing the risk of hyponasal speech and obstructive sleep apnea. Before surgery, the child's speech was characterized by moderate hypernasality, and after surgery, it was judged to be within normal limits. Conclusion Based on clinical experience and results from the systematic review, there is sufficient evidence that the buccal flap is effective in improving resonance and minimizing obstructive sleep apnea. We recommend BBFRP as another approach in selected patients to manage VPI. Supplemental Material https://doi.org/10.23641/asha.9919352


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