Workshop on Universal Reporting Parameters for the Speech of Individuals with Cleft Palate
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The National Institute on Deafness and Other Communication Disorders (NIDCD) and NIH Office of Rare Diseases (ORD) cosponsored a workshop from April 30th, 2004 through May 2nd, 2004 on Universal Reporting Parameters for the Speech of Individuals with Cleft Palate. The workshop was held at the Melrose Hotel in Washington, DC. Scientist-clinicians from the U.S. and other international experts met to review related components of the workshop.
Although there are certain perceptual features that characterize the speech of individuals born with cleft palate, there are many different systems that are used to describe and report these features (Kuehn and Moller, 2000; Lohmander and Olsson, 2004). Such diversity makes it difficult to interpret speech outcomes across the various systems in a uniform manner. It is recognized that universal standards of reporting would be desirable (Dalston et al., 1988). There are many benefits of a universal system of reporting, including the possibility of globalized clinical trials involving collaborative groups from different geographic regions (Shaw, 2004). In practice, however, universal measures are difficult to achieve in part because local practitioners have utilized systems for a long time in their own practices and they may be reluctant to give up their own system in favor of a different one.
In 2002, Kuehn, Trost-Cardamone, and Sell presented a 3-stage plan that involves universal parameters as the third stage (Kuehn et al., 2002). The first stage, "Evaluation," involves the usual assessment procedure that local teams perform routinely. Such evaluation may utilize instrumental diagnostic procedures in addition to perceptual assessment. The second stage, referred to as "Mapping," proposes to use the measures obtained from the Evaluation stage and convert those measures to the third stage. The third stage, referred to as "Reporting," proposes to include a relatively small number of perceptual parameters that are truly universal and that characterize the speech of individuals born with cleft palate, regardless of the language spoken by the individual.
The purpose of the 3-stage system is to summarize speech outcomes in a standardized manner for individuals born with cleft palate. It is intended that this should be based on clinical data collected according to local detailed speech evaluation protocols in the ambient spoken language. The goal is to provide a common approach in describing and reporting clinical speech outcomes irrespective of the particular language. The system is not intended to report audit or research outcomes in its present form.
The plan presented by Kuehn et al. (2002) was modified by a larger group of individuals who comprised the steering committee for the workshop. The steering committee members were Gunilla Henningsson, David Kuehn, Debbie Sell, Triona Sweeney, Judith Trost-Cardamone, and Tara Whitehill. The steering committee prepared reports that were presented at the workshop and are reproduced in the next section. All workshop attendees were invited specifically for their expertise in speech and their experience in dealing with the cleft palate population.
The purpose of the workshop was to further develop and refine the universal reporting parameter system. Although the workshop was conducted in English, a concerted effort was made to invite participants who are fluent not only in English but in other languages as well. Cross-language applicability clearly is important if the reporting system is to be truly universal.
The presentations focused on the following major topics.
Evaluation. Presented by Triona Sweeney and Tara Whitehill.
The purpose of this presentation was to discuss the diversity across evaluation systems used by different clinicians and teams. An informal measure was distributed to the attendees to obtain additional information about such diversity among the experts present.
View Slide Presentation (22 slides):
Speech Sampling. Presented by Gunilla Henningsson.
An adequate sampling of speech is critical if the input data (i.e., the evaluation measures) to a reporting system are to be accepted as valid indicators of speech outcome. Languages differ in relation to the distribution of speech sounds that are vulnerable versus relatively insensitive to the cleft palate condition. The speech samples "short words" and short "short sentences", based on target speech sounds vulnerable to the specific language, were presented as the ideal speech sampling procedure. However, no decisions were made as to the level of adequacy to be recommended. Still, it is important that the speech sampling procedure be consistent across languages in avoiding bias either in a diagnostically positive or negative direction.
View Slide Presentation (47 slides):
Reporting Parameters and Guidelines for Usage. Presented by Debbie Sell, Judith Trost-Cardamone and Triona Sweeney.
The initial set of reporting parameters developed by the steering committee was discussed at length. Modification of the initial set was made based on the discussion. The guidelines that will be used in relation to the parameters necessarily depend on the final set of parameters that are agreed upon. Thus, less time was spent on the guidelines, in deference to the parameters, but it was agreed that a detailed set of guidelines will be critical in proper utilization of the parameters.
View Slide Presentation (41 slides):
Mapping. Presented by Tara Whitehill.
Preliminary experience in mapping evaluation measures to the initial set of parameters developed by the steering committee was discussed. Ultimately, a workable mapping system will be essential if the 3-stage plan of Evaluation-Mapping-Reporting is to be implemented successfully.
View Slide Presentation (29 slides):
Identification Material. Presented by Debbie Sell.
Demographic information about the individual patients for whom the evaluation data are based and the conditions within which the evaluation measures were obtained will be important to maximize the usefulness of the reporting parameters. It will be important to strike a reasonable balance between including the most salient information impacting speech outcome versus unnecessarily complex or detailed information that may be superfluous.
View Slide Presentation (18 slides):
Parameters: Classification of Articulation Errors: Discussion & Recommendations for Revisions
The final workshop session involved an open discussion among all attendees who expressed their opinions regarding the current status of the universal reporting system plan. These opinions ranged from "generally happy" with the status of the plan to "this is a great start" and "there is lots of work ahead." Several points were raised which are summarized below.
- Consider computerizing the system for online usage.
- The reporting system should be compatible with the World Health Organization (WHO) classification system.
- Specify the primary target recipients of the reporting parameters information obtained.
- Uncertain whether the proposed system will be adopted by clinicians and used in the manner intended.
- The system may eventually elevate standards of care globally.
- Stress the importance of diversity across languages that the system must cover if it is to be truly universal.
- Include a checklist for the phonetic inventory of the target language on the identification form to indicate which speech sounds, and perhaps which contexts, were evaluated.
- Definitions of the parameters and subcategories within parameters must be very clear and, ideally, examples of each should be given otherwise clinicians might be reluctant to use the system.
- The guidelines will have to be very clear in proper use of the reporting parameters; consider the use of training videos or exemplars of each parameter subcategory that could be modeled by speech experts or produced by patients.
- The system should be kept as simple as possible; too many details may lead to disagreement among users and will diminish reliability.
- A global speech parameter such as overall severity, acceptability, intelligibility, or normalcy needs to be determined and added to the set of reporting parameters.
- Trial testing of the system will be important especially in addressing the issues of mapping from the evaluation stage to the reporting stage and reliability in designation of the parameter subcategories.
- The system, in its present form, must not be used for comparison across treatment centers.
- Possible future use of the system for research or audit purposes would require more highly controlled input data (i.e., from the evaluation stage) including measures of reliability and adequate specification of speech samples.
- In eliminating the distinction between primary versus secondary parameters, there might be some ambiguity between reporting those speech errors that are most directly related to the cleft palate condition, especially velopharyngeal impairment, versus those errors that are less directly related to the cleft palate condition.
As a result of the formal presentations and subsequent discussions, further refinement of the universal reporting system was made. One major change was that the two-category classification involving primary and secondary parameters, originally proposed by the steering committee, was simplified by merging aspects of the two categories into one set. At the close of the workshop, a consensus favored the following five parameters: Hypernasality, Hyponasality, Audible Nasal Air Emission and/or Turbulence, Articulation Errors, Voice/Laryngeal Disorder. The steering committee was charged with redrafting these parameters and their respective subcategory definitions. In addition, the steering committee will redraft the Identification Form and the Guidelines to be commensurate with the new set of parameters. It is the intent of the steering committee to publish these revised documents in suitable publication media for widespread professional dissemination.
Dalston RM, Marsh JL, Vig KW, Witzel MA, Bumsted RM. Minimal standards for reporting the results of surgery on patients with cleft lip, cleft palate, or both: a proposal. Cleft Palate J. 1988;25:3-7.
Kuehn DP, Moller KT. Speech and language issues in the cleft palate population: the state of the art. Cleft Palate Craniofac J. 2000;37:1-35.
Kuehn DP, Trost-Cardamone JE, Sell D. Issues in universal reporting parameters for speech; Study Session. American Cleft Palate-Craniofacial Association, Seattle, WA. 2002.
Lohmander A, Olsson M. Methodology for perceptual assessment of speech in patients with cleft palate: a critical review of the literature. Cleft Palate Craniofac J. 2004;41:64-70.
Shaw W. Global strategies to reduce the health care burden of craniofacial anomalies: report of WHO meetings on international collaborative research on craniofacial anomalies. Cleft Palate Craniofac J. 2004;41:238-243.