Only by agreeing on a common, standard set of outcome measures for the comprehensive appraisal of cleft care inter-center comparisons can become possible. The rationale for ICHOM was to suggest a standard set that would be possible to follow also in low-income countries, containing measures that matter to the patient and are comparable across the countries (i.e., languages), thus, that is valid, simple, and cater the aspects of the World Health Organization framework for International Classification for Function, disability, and health (ICF, 2001).
An international working Group (https://ichom.org/files/medical-conditions/cleft-lip-palate/cleft-lip-palate-flyer.pdf), was led through a structured process to reach agreement on a standard set of outcomes (Allori et al., 2017). For speech and communication, an appropriate set should be valid (i.e., measure relevant aspects and what they are intended to measure), reliable, simple and cater the ICF-aspects. And it should be possible to make a judgement based on auditory perception. Based on previous knowledge and experiences we wanted outcomes in terms of speech proficiency: consonant production and velopharyngeal function. Finally, it should include a measurement of what matters to the environment, that is basically intelligibility (or acceptability), and the patient her/him-self, that is own opinion.
The decided ICHOM Standard Set of Speech fulfills the requirements of ICF (ICF, 2001) and comprise the Function level with two clinician-reported and one self-reported outcome, and the Activity and Participation level with one parent reported and one self-reported outcome.
|
AGE (Years)
Outcomes |
5 (4-6) |
10 (10-12.5) |
19 (18-22) |
Measurement |
Measure |
|
FUNCTION |
|||||
|
Consonant Production |
X |
X |
X |
PCC* |
% |
|
Velopharyngeal Function |
X |
X |
X |
VPC-R** |
Scale 0–2** |
|
Patient Perspective on Speech |
X |
X |
CLEFT-Q *** Speech Function |
Score |
|
|
ACTIVITY and PARTICIPATION |
|||||
|
Intelligibility |
X |
X |
ICS**** |
Mean Score |
|
|
Patient Perspective on Communication |
X |
X |
CLEFT-Q*** Speech Distress |
Score |
|
|
* The measure of percentage consonants correct (PCC) was originally developed by Shriberg and Kwiatkowski (1982) and based on conversational speech. Single-word material may be used, if results are not to be related to severity of involvement (Shriberg et al., 1997). Calculating the PCC in (restricted) single word samples have been used to assess articulation skills in children born with cleft palate (e.g., Scherer et al., 2008; Klintö et al., 2014). ** 0=competent, 1=marginally incompetent, 2=incompetent (Lohmander et al., 2009; 2017). *** Klassen et al., 2018. For more information https://qportfolio.org/cleft-q/#top. **** McLeod et al., 2012. The ICS is available at http://www.csu.edu.au/research/multilingual-speech/ics. |
|||||
The measure percentage of consonants correct (PCC) (Shriberg et al., 1997) is based on assessment of target consonants as correct/not correct in a restricted word list for cross-linguistic comparison (Hutters & Henningsson, 2004).
The rating of velopharyngeal competence (VPC), using the scale VPC-R, is an overall assessment of velopharyngeal function based on available speech material. The rating is performed on a three-point ordinal scale (0 = competent, 1 = marginally incompetent, 2 = incompetent), and was chosen as it is intuitive, simple, and reasonable valid (Lohmander et al., 2017).
The Intelligibility in Context Scale (ICS) for measuring functional intelligibility is available in many languages. The assessment, performed by a parent by rating seven statements on a Likert scale, is calculated as a mean value (McLeod et al., 2012; McLeod 2020).
Patient-reported evaluation measures used in cleft lip and palate (CLP) care should be CLP specific, holistic (i.e., examine the patient's entire situation and not just a small part), validated and internationally accepted. CLEFT-Q is a patient-reported assessment measure that meets these criteria. Among 12 scales for different sub-areas, Cleft-Q contains one scale on speech function and one on speech distress in connection to speech, to capture the patient’s own opinion (Klassen et al., 2018).
References
* Allori A, Kelley T, Meara J, Albert A, Bonanthaya K, Chapman K, Cunningham M, Daskalagiannakis J, de Gier H, Guernsey C, Heggie A, Jackson O, Jones Y, Kangesu L, Koudstaal M, Kuchhal R, Lohmander A, Long Jr R, Magee L, Monson L, Rose E, Sitzman T, Taylor J, Thornburn G, van Eeden S, Williams C, Wirthlin J, Wong K. A standard set of outcome measures for the comprehensive appraisal of cleft care. Cleft Palate-Craniofacial Journal, 2017;54:540–554.
* Hutters B, Henningsson G. Speech outcome following treatment in cross-linguistic cleft palate studies: methodologic implications. Cleft Palate-Craniofacial Journal, 2004;41:544–549.
* ICF – International Classification of Function, Disability and Health (WHO, 2001) http://www.who.int/classifications/icf/en/
* Klassen AF, Riff KWW, Longmire NM, Albert A, Allen GC, Aydin MA, Baker SB, Cano SJ, Chan AJ, Courtemanche DJ, Dreise MM, Goldstein JA, Goodacre TEE, Harman KE, Munill M, Mahoney AO, Palomares Aguilera M, Peterson P, Pusic AL, Slator R, Stiernman M, Tsangaris E, Tholpady SS, Vargas F, Forrest CR. Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries. CMAJ, 2018;190 E455-E462
* Klintö K, Svensson H, Elander A, Lohmander A. Speech and phonology in Swedish-speaking 3-year-olds with unilateral complete cleft lip and palate following different methods for primary palatal surgery. Cleft Palate-Craniofacial Journal, 2014;51:274–282.
* Lohmander A, Hagberg E, Persson C, Willadsen E, Lundeborg I, Davies J, et al. Validity of auditory perceptual assessment of velopharyngeal function and dysfunction: the VPC-Sum and the VPC-Rate. Clinical Linguistics & Phonetics, 2017;31:589-597.
* Lohmander A, Willadsen E, Bowden M, Henningsson G, Persson C, Hutters B. Methodology for Speech Assessment in the Scandcleft Project – an international randomised clinical trial on palatal surgery: experiences from a pilot study. Cleft Palate-Craniofacial Journal, 2009; 46:347-362.
* McLeod S, Harrison LJ, McCormack J. Intelligibility in Context Scale: Validity and reliability of a subjective rating measure. Journal of Speech, Language, and Hearing Research, 2012;55:648-656.
* McLeod, S. Intelligibility in Context Scale: Cross-linguistic use, validity, and reliability. Speech, Language and Hearing, 2020;23:9-16.
* Scherer NJ, Williams AL, Proctor-Williams K. Early and later vocalization skills in children with and without cleft palate. International Journal of Pediatric Otorhinolaryngology, 2008;72:827–840.
* Shriberg LD, Kwiatkowski J. Phonological disorders III: a procedure for assessing severity of involvement. Journal of Speech and Hearing Disorders, 1982;47:242–256.
* Shriberg LD, Austin D, Lewis BA, McSweeny JL, Wilson DL. The Percentage of Consonants Correct (PCC) metric: extensions and reliability data. Journal of Speech, Language and Hearing Research, 1997;40:708–722.