1. To audit or not to audit: Speech at 10 years S VAN EEDEN ET AL. NOTTINGHAM 2016

2. Background CSAG recommendations – audit at 5, 10, 15, 20 years 5 year audit well established with clearly defined processes and national outcome standards 1 10 year outcome standards – 80% green CFSGBI minimum data set 2 – 5 years; 10 desirable 1 Britton, L.et al. (2009) National Standards for Speech (UK) in Children with Cleft Palate (+/- cleft lip/alveolus) 2 CFSGBI minimum data set – agreed at meeting on 28/6/13

3. Questions What outcomes are we achieving by 10;11? Should we only audit those who were not meeting the standards at age 5? What effect does timing of ABG have on speech outcomes? Do we need to collect data as rigorously as with 5 year olds, i.e. CAPS-A standards?

4. Method All centres invited to submit any 10 year data available Data collated and analysed looking at i.outcomes in speech related to structural difficulties (VPI and fistulae) ii.secondary surgery rate at 10 iii.outcomes in articulation iv.persistent CSCs v.comparison of 5y data with 10y data vi.timing of ABG in relation to 10y audit point vii.comparison of outcomes for those cases adhering to CAPS-A process vs clinical records (GOS.SP.ASS)

5. Participants Data submitted from 8 sites (Bristol, Glasgow, Leeds, Newcastle, North Thames (Broomfield), Oxford, Salisbury, South Wales) 444 births in total from 1999-2004 120 excluded (as per 5 years protocol) – 27% No records for a further 95 – 21% 52% of whole cohort audited (71% of those eligible)

6. Participants 229 records in total:

7. Outcomes: Structurally related speech problems

8. Outcomes: secondary surgery rates 52/130 had secondary surgery – 40% 7 patients had residual fistula at 10 years Average age at secondary surgery 6;6 years (range 3;1 – 10;1)

9. Outcomes: articulation

10. Outcomes: articulation by CSCs

11. Outcomes: comparing 5 and 10 y data 152 patients had data at 5 and 10 years for comparison (66% of audited cohort) Wanted to know: did structurally related speech problems or CSCs change between 5 years and 10 years?

12. Outcomes: comparing 5 and 10 y data Structurally related speech problems CSCs

13. Outcomes: comparing 5 and 10 y data Experience in Newcastle Patient A - CPO 5 yr CAPS A Hypernasality8* dysphonic Hyponasality8* dysphonic Nasal emission8* dysphonic Nasal turbulence8* dysphonic Anterior CSCs Posterior CSCs Non-Oral CSCs Passive CSCs Video at 10y

14. Outcomes: comparing 5 and 10 y data Experience in Newcastle Patient A: patient journey Sure start intervention and Cleft SLT input before 5y Some query over developmental coordination skills Glue ear SLT after 5y: daily speech work in school; specialist teaching service Secondary surgery Ongoing SLT input until 9 years

15. Outcomes: comparing 5 and 10 y data Experience in Newcastle Patient B - UCLP 5 yr CAPS A Hypernasality Hyponasality Nasal emission Nasal turbulence Anterior CSCs Posterior CSCs Non-Oral CSCs Passive CSCs Video at 10y

16. Outcomes: comparing 5 and 10 y data Experience in Newcastle Patient B: patient journey Minor concerns pre 5 year audit – resolved without intervention Grommets before age 3 Speech review at 7 – slight deterioration 10 year audit - continued deterioration Speech review at 13 and VF Listed for secondary surgery

17. Outcomes: ABG 5 sites submitted data re ABG 65 patients 51/65 had completed ABG by time of audit

18. Outcomes: comparing CAPS-A data with clinical data 160 patient data collected and analysed using CAPS-A (70% of eligible audit patients) 69 patient data collected in clinic by specialist cleft SLT (30% of eligible audit patients) Do we see any differences in terms of outcome standards? CAPS-AClinicalUK UCLP362533 BCLP91912 CPO555655

19. Outcomes: comparing CAPS-A data with clinical data Statistically significant difference p=0.013 (Fishers Exact Test)

20. Conclusions

21. What outcomes are we achieving by 10;11?

22. Conclusions What outcomes are we achieving by 10;11? 84% green profile for VP function/structure 79% green profile for articulation Persistent articulation errors mostly anterior errors

23. Conclusions What outcomes are we achieving by 10;11? 84% green profile for VP function/structure 79% green profile for articulation Persistent articulation errors mostly anterior errors Should we only audit those who were not meeting the standards at age 5?

24. Conclusions What outcomes are we achieving by 10;11? 84% green profile for VP function/structure 79% green profile for articulation Persistent articulation errors mostly anterior errors Should we only audit those who were not meeting the standards at age 5? No, we have seen changes which would not be captured if we did this

25. Conclusions What outcomes are we achieving by 10;11? 84% green profile for VP function/structure 79% green profile for articulation Persistent articulation errors mostly anterior errors Should we only audit those who were not meeting the standards at age 5? No, we have seen changes which would not be captured if we did this What effect does timing of ABG have on speech outcomes?

26. Conclusions What outcomes are we achieving by 10;11? 84% green profile for VP function/structure 79% green profile for articulation Persistent articulation errors mostly anterior errors Should we only audit those who were not meeting the standards at age 5? No, we have seen changes which would not be captured if we did this What effect does timing of ABG have on speech outcomes? Not enough data re ABG to make any conclusions but most patients (78%) in this study had completed ABG so may not be a significant factor

27. Conclusions What outcomes are we achieving by 10;11? 84% green profile for VP function/structure 79% green profile for articulation Persistent articulation errors mostly anterior errors Should we only audit those who were not meeting the standards at age 5? No, we have seen changes which would not be captured if we did this What effect does timing of ABG have on speech outcomes? Not enough data re ABG to make any conclusions but most patients (78%) in this study had completed ABG so may not be a significant factor Do we need to collect data as rigorously as with 5 year olds, i.e. CAPS-A standards?

28. Conclusions What outcomes are we achieving by 10;11? 84% green profile for VP function/structure 79% green profile for articulation Persistent articulation errors mostly anterior errors Should we only audit those who were not meeting the standards at age 5? No, we have seen changes which would not be captured if we did this What effect does timing of ABG have on speech outcomes? Not enough data re ABG to make any conclusions but most patients (78%) in this study had completed ABG so may not be a significant factor Do we need to collect data as rigorously as with 5 year olds, i.e. CAPS-A standards? Very little difference seen across outcomes collected by 2 different methods

29. Discussion and recommendations To audit or not to audit? 10 year data useful for clinical records and local audit Useful to compare secondary surgery rate nationally at 10 years? Persistent articulation problems – intelligibility vs acceptability: PROMS

30. Discussion and comments please…. Thank you to all who helped with this project including all the SLTs involved in data collection and consensus listening. Big thanks to the following who submitted data to me: Lisa Crampin Helen Extence Cat Hansen Fiona Jeyes Natalie Pancewicz Anne Roberts Lucy Southby Shirley Williams