UK National Paediatric Bilateral Audit, 11 th April 2013

1. ‘Brief Assessment of Parental Perception’: the wider context of bilateral cochlear implant outcomes UK National Paediatric Bilateral Audit, 11th April 2013 Caroline Gamble (USAIS) Lindsey Edwards (GOSH) Clinical Psychologists

2. I.C.Psych UK Special Interest Group • Fionna Bathgate • Emily Bennett • Jenny Cropper • Lindsey Edwards • Caroline Gamble • Clare Jacobson • Zara Jay • Rosie Kentish • Jen Mance • Victoria Samuel • Jemeela Savage • Alex Webb (Edwards)

3. Health-Related Quality of Life HRQL refers to the impact of the individual’s health status (i.e. where there is disease or disability) on their physical, emotional, social and behavioural well-being.

4. Why look at Quality of Life in paediatric cochlear implantation? • Previous research: • Unilateral cochlear implants • Growing literature base • Generic vs specific measures • Children with complex needs • Bilateral sequential implants • Sparreboom, Snik & Mylanus (2012) • Sparreboom, Leeuw, Snik & Mylanus (2012)

5. Clinical experience with early bilateral cochlear implant cases • In young children (up to about 5 years) • Temperament/behavioural issues • Coping with change • Junior school age (5-11 years) • Initial acceptance of new sound • Preparation for surgery • Adolescents (11-18 years) • Understanding the benefits • Integrating the new sound • Appearance

6. Development of the Brief Assessment of Parental Perception (BAPP) • Aims • Assess acceptance of second implant (or simultaneous bilateral implants) • Assess impact on HRQL • Assess change over time (no pre-implant data) • Brief • Simple

7. BAPP Questions

8. BAPP Questions

9. Results from the BAPP

10. Demographic data for the BAPP

11. Q1 – When your child is awake, do they wear both implants / their second implant: None of the time, some of the time, or all of the time? Simultaneous Sequential

12. Q1 – Comparing processor use across time • Simultaneous group ranges from 91.6-100% across the time points • Sequential group – more than 85% of children wear their 2nd implant all the time • No significant differences between the groups

13. Q2 – Thinking about your child’s willingness to wear both implants / their second implant, are they: Very reluctant, reluctant, neutral, keen, or very keen? Simultaneous Sequential

14. Q2 – Comparing willingness to wear across time • At one and two years post-implant, the percentage of simultaneously implanted children who are rated as ‘keen’ or ‘very keen’ to wear their implants is significantly greater than the percentage of sequentially implanted children who are ‘keen’ or ‘very keen’ to wear their 2nd implant • Effect disappears by three years (? due to sample size) Sig. Sig.

15. Q3 – Overall Quality of Life Score • Includes reported changes in • Behaviour • Contentment (emotional well-being) • Communication • Learning • Getting on with friends • Potential range from -10 to 10 • Data only included if all 5 items answered

16. Q3 – Overall Quality of Life Score Sig.

17. Q3 – Comparing overall quality of life across time • Both groups showed improvements in Qof L at all 3 intervals • At one and two years post-implant, the simultaneous group showed significantly greater improvements in QofL than the sequential group • Difference at 3 years is not significant (? due to sample size) Sig. Sig. .

18. Q3 – The impact of age • Simultaneous group – similar improvements in QofL regardless of age • Sequential group –significantly greater improvements for children who receive their second CI at a younger age

19. Q3 – The impact of time between implants (for sequentially implanted children only)

20. Q3 – The impact of time between implants (for sequentially implanted children only) • Children who had less than 4 years between their first a and second implants showed significantly greater improvements in QofL

21. Q4 – Would you recommended bilateral / sequential implantation to another family in a similar situation? Simultaneous Sequential

22. Q4 – Comparing recommendation across time

23. Summary • The majority of children wear their cochlear implants all of the time, and there are no differences between simultaneously and sequentially implanted children • The majority of children are either keen or very keen to wear their implants; simultaneously implanted children are generally more willing to wear their implants than sequentially implanted children at one and two-years post-implant • Both groups of children showed improvements in quality of life; the effect was greater for simultaneously implanted children • Sequentially implanted children tend to show more improvements in QofL if they are younger when they receive their 2nd implant and if the gap is less than 4 years • The vast majority of parents would recommend bilateral implants (both simultaneous or sequential) to other families

24. The future of the BAPP • The IC-Psych group plan to do further analysis, exploring the association between the BAPP and the other measures discussed today (e.g. localisation, speech in noise, speech and language outcomes) • We hope to use the data from the audit to validate and standardise the questionnaire for use in future research • Many implant centres are choosing to continue using the BAPP as an outcome measure for all children receiving cochlear implants • We are in the process of developing an adolescent version of the BAPP for teenagers to complete independently (BAAP)