Identification Information Debbie Sell PhD FRCSLT Lead Speech and Language Therapist, North Thames Regional Cleft Unit, Head of Speech and LanguageTherapy Department, Great Ormond Street NHS Trust and Honorary Senior Lecturer University of London

Demographic Data Cleft Palate/Craniofacial team/Centre/Unit Name/gender/DoB/ Cleft Type..which classification Syndrome Language in which assessment was conducted Date of Assessment Rated by

Salient Orofacial Exam Findings ?Heading Oronasal fistula present who decides, pinhole/slit, location (choices?) Residual cleft in alveolar process Other ….how will these data be used? Nb. Upper respiratory tract infection

Palatal Surgery History Initial palatoplasty: age/procedure Primary veloplasty (Delayed Hard Palate Closure)?: age at veloplasty/ age at hard palate closure Secondary speech surgery: age/ procedure But what is the Question?

PopulationInterventionOutcomes +/- control group Evidenced Based Practice in Speech Pathology, Reilly et al, 2004, pub. Whurr Evidenced Based Practice

Speech Therapy History Age at which therapy began: Reason for therapy: Choices? Number of Sessions per week: ?? Age at which therapy terminated:

Scancleft Total number of visits (team or local SLP) Type of management: routine, review, counselling patients, counselling oithers, treatment Reason for intervention: language delay, phonological problems, articulation problems, voice problems, other

UK CSAG study 1.Location: Regional Centre / Local Site / Health Centre / Educational Setting / Home / Other 2. Focus – language /consonant sound errors/nasality / voice /other 3. Type of schooling: Mainstream / Statemented in mainstream / Special school / Language unit / In process of being statemented 4.Frequency – block / >once a week / weekly / intensive within a day/other 5.Number of sessions received 6. Number of missed sessions? - Did not attend - Cancelled by professionals - Cancelled by parents

Age at Assessment 5.0 – to to > 20 years Issues: Audit versus other research outcome studies Eurocleft: 5.00, 10.00, 15.00, years UK - CP , 10.00, years BCLP/UCLP , 10.00, 18 years or end of treatment

Level of Assessor Trained or credentialed as speech specialist A speech specialist in cleft palate speech The same person who collected the data Not providing speech therapy to this individual patient Not participating in/providing physical management for this individual patient

Trained or credentialed as speech specialist A speech pathologist not specialising in cleft palate A speech specialist in cleft palate speech A specialist speech pathologist in cleft palate/palatal anomalies The same person who collected the data Not providing speech therapy to this individual patient Not participating in/providing physical management for this individual patient Involved/Not involved in clinical care of the patient Member/Not a member of the Cleft/Craniofacial Team caring for the patient

Level of Mapper The same person who collected the data A speech specialist in cleft palate speech Other

Level of Mapper The same person who collected the data The same person who analysed the data A speech specialist in cleft palate speech A specialist speech pathologist in cleft palate/palatal anomalies Other A speech pathologist not specialising in cleft palate/palatal anomalies A student A member of another profession

Speech Sample *these items should be included at each age of assessment Is this necessary on a mapping system? For older patients sentences can be read or repeated? Discussion of process of elicitation

Perceptual Judgements based on: Live speech Audio recordings without video (digital/analogue) Video recordings including audio (digital/analogue) Both audio and video recordings

Reliability measures for speech judgments Were obtained for this individual patient (briefly describe method) Were not obtained Consensus listening for speech judgments Were obtained for this individual patient (briefly describe method) Were not obtained

Results gained by: Consensus listening by speech pathologists in the Team Consensus listening by independent non- team speech pathologists Team speech pathologists with reported inter- and intra rater reliability for the study Independent non-team speech pathologists with reported inter- and intra rater reliability for the study Live clinical judgements Listeners: Non-blinded Blind assessment

Other thoughts Identify baseline assessment mapped from? Storage: where and how should data be stored and retrieved