Celebrating 25 years

University of Southampton Auditory Implant Service Progress Report 215

s Celebrating 25 years of achievement. University of Southampton Auditory Implant Service nt Referrals from South of England and Channel Islands Auditory Processing Disorder Bilateral Cochlear Implant Audit Purpose built accommodation Multi-disciplinary team Cochlear Implants Optimised cochlear implant tuning The first individual received a cochlear implant at the Institute of Sound and Vibration Research in late 199. Since then the service has grown and developed, first as the South of England Cochlear Implant Centre then later as the University of Southampton Auditory Implant Service, reflecting the provision of new types of auditory implant device and hearing services in addition to cochlear implantation. As well as being our 25th anniversary, 215 also marks the year that the 1th patient received a cochlear implant from our service. We are now housed in a state of the art purpose-built clinic which sits within the Highfield Campus of the University of Southampton, next to our previous home in the Institute of Sound and Vibration Research. Our staff have grown from a small team of just five in 199 to the large multidisciplinary team of 5 which exists today. During the last 25 years, we have continued to innovate and develop, providing a range of clinical services to support the needs of hearing impaired people and working with colleagues to undertake research, education and development in new technologies and rehabilitative methods to enable those with hearing impairment to flourish and participate fully in all areas of daily life. Established in 199 formerly known as the South of England Cochlear Implant Centre Adult Therapists Audiological Scientists Clinical Psychologists Clinical Secretaries Customer Services Team Educational Audiologists ENT Consultant Surgeons Speech and Language Therapists Teachers of the Deaf State of the art testing facilities 1 patients implanted Middle Ear Implants Bone Anchored Hearing Aids OUR PAST OUR PEOPLE OUR PLACE OUR PATIENTS OUR PROGRAMMES OUR PROJECTS Bone Conduction Implants Hearing preservation Congenitally deaf adults: outcomes and expectations imap: improving accessibility to music Contents All age service 4 Our Service 5 Service Provision 8 Clinical Outcomes 9 Adult Service 1 Paediatric Service 12 Service Developments 13 Education and Training 14 Audits and Research What Our Service Users Think Self-funding and NHS E-health and tele-medicine 2 3

Our Service Service Provision The University of Southampton Auditory Implant Service (USAIS) provides a regional service for deaf adults, teenagers and children in the South of England and the Channel Islands. This report focuses on the results obtained from the past five years of auditory implantation. The report data was collected from 1 April 21 to 31 March 215. Previous reports have been published in 1997, 1999, 21, 23, 25, 27, and 29. In addition, we report to our NHS commissioners on an annual basis and these activity reports can be found on our website. The aim of the Service is to provide a quality service based on sound scientific research. The service is part of the Faculty of Engineering and the Environment, University of Southampton. Our staff are highly qualified in their field and developing further specialisms. They work in three locality teams: East, Central and West. USAIS was established as a service transforming the lives of deaf people with Cochlear Implants. In 29 NICE (National Institute for Clinical Excellence) issued the Technical Advice Guidance 166 so that adults and children whose hearing loss met the criteria in the guidance could have access to funding though the NHS. The service must also meet the service specifications D9/S/A Specialised Ear Surgery Cochlear Implants. USAIS requires a referral from Ear, Nose and Throat or Audiology professionals. We are happy to receive referrals irrespective of age, co-existing disability, duration of deafness or aetiology of hearing loss of the individual being referred. Referrals to USAIS and subsequent operations have continued to increase throughout the five years. Cochlear Implant Referrals 18 16 Age at implantation (Paediatric patients) Number of patients 14 12 1 8 6 4 2-1 1-2 2-3 3-4 4-5 5-6 6-7 7-8 8-9 9-1 Age (years) Age at implantation (All patients) 1-11 11-12 12-13 13-14 14-15 15-16 16-17 17-18 Number of referrals 14 12 1 8 6 4 2 21-11 211-12 212-13 213-14 214-15 NHS year Paeds Adults Number of patients 5 4 3 2 1 Surgeries are carried out by three surgeons at five hospitals in the cities of Southampton and Portsmouth in Hampshire. -9 1-19 2-29 3-39 4-49 5-59 6-69 7-79 8-89 9-99 Age (years) Cochlear Implant Operations 18 16 14 Number of patients 12 1 8 6 4 Paeds Adults Our purpose built facilities Our Mission To provide a quality service based on sound scientific research for children, teenagers and adults who require implantable hearing devices. To maintain our role as the leading centre in the South of England and to provide a high quality all-age service at a competitive cost. 2 21-11 211-12 212-13 NHS year 213-14 214-15 4 5

Current Age of Cochlear Implant Users on Programme 214/5 2 I have always felt reassured that I could ask questions, no matter how trivial, regarding my concerns. This has made my whole implant experience very much easier. Maintenance Patients with cochlear implants need access to a maintenance programme. Patients have regular reviews to ensure that the cochlear implants are continuing to function optimally. USAIS are an all age service and we have cochlear implant users in all sections of the age spectrum. One third of the current cochlear implant users are aged between 1 and 19 years old. Cochlear Implant maintenance Adults Key Unilateral Bilateral Non users 2 people Number of patients 15 1 5 2 15 1 5-1 1-2 2-3 21-11 3-4 4-5 5-6 6-7 7-8 Age (years) Cochlear Implants by manufacturer implanted at USAIS 21-215 Number of implants 211-12 MED-EL Sonnet EAS 212-13 Year of implant Cochlear Implant sound processors currently in use at USAIS Number of processors in use 5 45 4 35 3 25 2 15 1 5 AB Harmony AB Naida AB Neptune MED-EL Opus 2 MED-EL RONDO MED-EL Sonnet MED-EL CIS Pro + Processor type Nucleus CP81 213-14 Nucleus CP91 Nucleus ESPrit 3G 8-9 over 9 Range of cochlear implants supported USAIS supports a range of devices and gives patients the opportunity to pick the device best suited to them. The current most popular device is Cochlear since the release of the CP91. 214-15 Nucleus Freedom Oticon Saphyr Neurelec MED-EL Cochlear AB Patient demonstration Failures, non-users, explants and re-implantations Since it was established 25 years ago, USAIS has supported over 1 cochlear implant patients. Of these, there are 1 bilaterally implanted patients who are only using one device. Four of these were implanted elsewhere and transferred into our service. There are 16 patients who are not receiving any benefit from their implant. Of the patients implanted since April 21, only one is not able to get any benefit. This patient had meningitis and there was considerable delay before he was well enough for a cochlear implant. Of a total of 1321 devices implanted since 199, there have been 67 devices explanted. The table below outlines the numbers per device type. Manufacturer Implanted Explanted % AB 328 4 1% Cochlear 732 45 6% Ineraid 4 3 75% MED-EL 242 13 5% Neurelec 15 2 13% TOTAL 1321 67 5% Great service keep working your miracles Children 6 7

Adult Cochlear Implant Service Adult Speech Discrimination Test Outcomes The Bamford Kowel Bench (BKB) Sentence test is presented at 65dB(A) in a sound alone condition with no visual cues. This test is performed on all adults who speak English pre-implant, as it is used to assess whether a patient is a suitable candidate for a cochlear implant. The figure below shows how the patients test results change from pre-implant to when they are assessed 12 months post-implant. The median BKB test result pre-implant is 1%, and the median result at 12 months post-implant is 83%. Adult Rehabilitation Workshops The adult rehab team have developed a number of workshops for our CI users, with the aim of maximising each individual s potential with their implant. Patients are invited to attend depending on their need and the workshops are run by our own rehab staff with support from our clinical psychologists, representatives from the implant manufacturers and our colleagues from the Hearing and Balance Centre (HABC) and the University Music Department. These workshops also offer participants a valuable opportunity to meet and share experiences with other CI users. Workshops include: Voice Workshop Exploring how voice is produced and looking at ways to keep the voice healthy. Both those with a hearing loss and those living with them have the potential for voice disorder as a result of stress and anxiety. Tinnitus Workshop Exploring the tinnitus mechanism and the way our thoughts can affect our behaviours and response to tinnitus. We discuss various coping techniques such as relaxation, sleep hygiene and mindfulness. Confident Communication Workshop - Aimed at improving self confidence in managing difficult listening environments for both CI users and their communication partners. Accessories Workshop These are practical hands-on sessions designed to help our CI users gather the information needed to use accessories such as direct connect leads and wireless accessories, telecoil and Bluetooth technology with increased confidence and find out what works best for them. Telephone Workshop Looking at practical techniques and strategies to help with using the telephone plus the opportunity to try out different phones and learn more about our telephone training programme. Music Workshop Exploring the challenges that music poses for CI speech processors and a chance to share experiences of listening to music with other CI users. The workshop also offers the opportunity to try out software that has been developed here at the university to help CI users get started with listening to music as well as having a go at playing some simple instruments in a group. It is a brilliant team who gives great service it is the little things they do that make the greatest difference Clinical Outcomes Sound Field Aided Response Levels A number of different procedures are used to assess the outcomes for cochlear implant users. All patients have their hearing tested pre and post-implant. This can be done in different ways according to the developmental age of the patient. Young children, typically below the age of 3 months, are assessed using Visual Reinforcement Audiometry; slightly older children are tested using Performance Audiometry moving on to Pure-Tone Audiometry performed by older children and adults. The audiogram below shows audiometry data for adults and children collected pre-implant and 12 months postimplant.the mean aided thresholds at 12 months post-implant are 35 dbhl for all frequencies (25 Hz, 5 Hz, 1 Hz, 2 Hz and 4 Hz) for both adults and children. 1 1 2 3 4 5 6 7 8 9 1 11 12 13 14 25 5 75 1K 2K 4K 6K 8K Frequency (Hz) mean unaided thresholds pre-implant BKB Sentence score in quiet (% correct) 1 8 6 4 2 pre-implant Time interval 1 year post-implant For patients who score 7% on BKB sentences or more post-implant, an additional, more challenging test is performed called BKB in adaptive noise. In this test the patient has to repeat back as many words from each sentence correctly as the background noise is adjusted. The resulting test result is a signal-to-noise ratio (SNR) showing where the patient can repeat 71% of the sentences correctly. The sentence is scored correct when 5% or more of the keywords are repeated back correctly. For this test the lower the score the better the hearing. Adults at 12 months post-implant scored a median of 5.4dB SNR whereas at five years post-implant they scored a median of 4.4dB SNR which shows an improvement in their ability to hear in adaptive noise over time. Telephone Training In January 215 we introduced an in-house Telephone Training Programme, comprising Telephone Workshops, a Handbook, 1:1 training calls and home visits (if required). In the first three months up to 31 March 215, 29 patients received the Telephone Training Handbook, 22 of these patients attended a Telephone Workshop and four home visits were carried out to support patients with telephone use. Number of participants 3 25 2 25 15 1 5 212-213 213-214 Year of workshop 214-215 Confident communication Music Tinnitus Accessories Voice Telephone mean unaided thresholds 12 months post-implant 8 9

Paediatric Cochlear Implant Service Categories of Auditory Performance The below diagram shows the Categories of Auditory Performance (CAP) test results for all the current paediatric cochlear implant users on our programme who had their operations between April 25 and March 214. This time interval was chosen in order to have a larger size cohort to report on at the five year post-implant interval. On average, the 193 children at the pre-implant stage had a rating of 1 i.e. at the level of awareness of some environmental sounds. A year after having their implants, the average was 4 understanding conversations. By five years post-implant children averaged 5.4, understanding on the phone. All children who use their implants are included in this data; a proportion of whom have significant additional disabilities. 1% 8% (n=194) (n=187) (n=15) toys. These pairs have a maximum degree of acoustic similarity such as cup-duck and man-lamb. The objective of the test is to identify the quietest level at which the child can identify the toys with 71% success rate. Children in the age range of two to five years of age with normal hearing can identify the toys at 3 35dB (A). Our three year post-implant data for children showed an average score of 43 db (A) which is around the level of a whisper at a distance of one metre. This average score is for children who have been implanted under five years of age and who have attended a three year audiology review appointment between 1 April 25 and 31 March 215. The data from 11 children is included in this average score. Please note the average score reflects the data only from those children who were able to perform the test at this interval; children who were unable to perform the test are not included. The average score includes data from the best aided condition (such as both implants together, implant and hearing aid together or one implant alone). For some children only the data from separate ears was available so this has been included in the average score. I will always be eternally grateful to the team for providing my son with the gift of sound and ongoing support. Parent of a cochlear implant user Percentage of category 6% 4% 2% % pre-implant No Awareness 1 year Years post-implant 1 Awareness of environmental sounds 2 Discriminates speech 3 Understands common phrases 4 Understands conversation 5 Understands known speaker on the phone 6 Follows group conversation with interfering noise 5 years 7 Uses phone with unkown speaker in unpredictable context If the children are subdivided into two groups: those implanted before or after 21, the group implanted more recently (n=87) have better CAP outcomes at one year post-implant. The earlier group, those implanted pre 21 (n=1) had an average CAP score of 3.8 whereas those implanted post 21 had an average CAP score of 4.2, showing that their progress has been more rapid than the earlier cohort. This can be attributed to children being funded to have two implants rather than one from 29 and due to the age of implantation reducing over time. Speech discrimination The McCormick Automated ToyTest (ATT) The ATT is routinely used for children above the age of two to two and a half years to assess speech discrimination ability. The test involves a child pointing to a toy from amongst up to seven pairs of Speech Intelligibility Rating The following chart shows the progress our children made with their speech intelligibility from pre-implant to five years post-implant. These 186 children were implanted between April 25 and March 215. This includes all children who use their implants. The children who have remained at level 1 five years after their implant have significant additional needs over and above their hearing loss. 62% of our paediatric cases have intelligible connected speech at five years post-implant, i.e. level 4 or 5. 1% 8% 6% 4% 2% % pre implant 1 year Years post-implant 5 years 1 pre-recognisable words. The child s primary mode of everyday communication may be manual. 2 connected speech is unintelligible. Intelligible speech is developing in single words when context and lip reading clues are available. 3 Connected speech is intelligible to a listener who concentrates and lip reads within a known context. 4 connected speech is intelligible to a listener with little experience of a deaf person s speech. 5 connected speech is intelligible to all listeners. The child is understood easily in everyday contexts. Use of Radio Aid Systems with Cochlear Implants Listening conditions in schools and other educational environments can be very different to those at home, especially background noise levels and distance to the speaker. They can be the most challenging faced by paediatric cochlear implant users at a time when they are simultaneously acquiring language and accessing the curriculum. In a listening environment the level of the desired speech signal compared to everything else (noise) is described as the signal-to-noise ratio (SNR). Children with a hearing loss are known to benefit from at least a 1dB SNR (Phonak 1998), preferably more (BATOD 21). Personal radio aid systems are Assistive Listening Devices (ALD) which aim to improve the SNR and therefore reduce the impact of background noise and distance in educational settings. A radio aid system comprises a transmitter worn by the speaker and one or two receivers worn by the listener as appropriate. USAIS encourages the use of and fits radio aid systems to paediatric cochlear implant users in line with the UK FM Working Group (UKFMWG) Quality Standards for the use of personal FM systems (NDCS 28). The standards aim for at least a 1dB SNR advantage. This would be indicated by a 1dB advantage in signal-to-noise ratios between the conditions with and without a radio aid. 2.9 average SNR no radio aid -6.6 average SNR with radio aid 9.7 average SNR advantage with radio aid Since 1 April 21 a total of 147 radio aid fittings were completed following UKFMWG Quality Standards. An average SNR advantage of 9.67dB was achieved across this range. Outreach Upon referral, each child is allocated a Speech and Language Therapist and Teacher of the Deaf, one of whom takes on the role of being the family s Key Contact supporting the parents and child closely. Direct contact with the child will be made in different settings, for example at home, school, the ward and in audiology clinics. High levels of contact are provided in the pre-implant and first year of implant use as a matter of routine and thereafter support is provided according to the needs of the individual child. The child s communication and listening skills are monitored until s/he moves onto the adult programme. As well as providing direct input, advice and support to the child and parents, the Key Contact attends relevant educational meetings. Advice and fitting of extra equipment such as radio aids or wireless accessories provided by the Outreach team when a child is ready, in liaison with local professionals and parents. USAIS bases its outreach programme on the NDCS/BCIG Quality Standards (25). ** **National Deaf Children s Society Quality Standards Cochlear Implants for children and young people - Guidelines for professionals working with deaf children and young people. (published by the National Deaf Children s Society April 25) 1 11

Service Developments Over the years the service has expanded to include: other Auditory Implants including Middle Ear Implants, Bone Conduction Implants and Bone Anchored Hearing Aids. This service must meet the specifications of D9/S/b Implantable Hearing Aids for Microtia, Bone Anchored Hearing Aids and Middle Ear Implants (All Ages). We are also able to offer additional services including a diagnostic clinic for Auditory Processing Disorders and an option for Selffunding of Cochlear Implants. Bone Conduction and Middle Ear Implants This service includes the MED-EL Bonebridge and Vibrant Soundbridge, Middle Ear Implants, as well as Bone Anchored Hearing Aids (Baha). We now have seven patients with Soundbridge devices, one with a Bonebridge device and one with a Carina device. When the Royal South Hants Hospital closed its Bone Anchored Hearing Aid service USAIS agreed to take it on. Since the service started 54 patients had been referred to USAIS up to 31 March 215. 14 patients have received a Baha implant and six children are using Baha devices on a soft band as they are not ready for surgical intervention. USAIS currently uses the Cochlear Baha device. Bone Anchored Hearing Aid Referrals Number of referrals 3 25 2 15 1 5 12-13 13-14 Year of referral 14-15 The ethos of the AIS is remarkable from reception staff to consultants; patients are treated by everyone as individuals, with respect and the utmost courtesy Softband Fittings Transferred to USAIS Implanted at USAIS at reception Auditory Processing Disorder We offer the only interdisciplinary Auditory Processing Disorder (APD) service in the UK via a designated clinic and specialist staff giving the unique opportunity for cohesive assessment and management, culminating in an interdisciplinary report where primary versus secondary concerns can be prioritised to best meet the individual s need. APD is characterised by poor perception of speech and non-speech sounds, has its origins in impaired neural function, and impacts on everyday life primarily through a reduced ability to listen, and so respond appropriately to sounds (BSA APD SIG, 211). It often co-occurs with language impairment, dyslexia, attention difficulties and memory difficulties. Between October 21 and March 215, 5 APD cases were seen. The primary sources for referral are ENT Consultants, GP Practitioners, Paediatricians, Audiologists, Speech-Language Therapists and selfreferrals. 85% of the referrals are children (<16 years of age). Staff collaborate with APD experts around the globe and author the National APD practice guidance documents. A service evaluation showed a 1% rating of excellence across all items including The interdisciplinary under one roof service was helpful in prioritizing needs and providing an integrated plan of action and I would recommend the service to a friend. Self-funded Cochlear Implant Service This service is for adults whose hearing levels fall outside the criteria set by NHS England for funding cochlear implants (NICE TAG 166). It was launched in September 214 and to date one patient has been implanted with a second patient scheduled for surgery in the near future. Clinical experience shows that some adults may not meet the NICE criteria but would benefit from cochlear implantation. To qualify for a cochlear implant through our self-funded route the adult needs to demonstrate a severe to profound hearing loss (worse than 7dBHL) in the high frequencies. In other words, still have a significant hearing loss but not as severe as required by NICE criteria, i.e. >9dBHL in the high frequencies and a BKB score of <5% for both ears. Education and Training Training courses Between 21 and 215 USAIS have run 4 training courses for professionals supporting our adult and paediatric patients in schools, colleges, hospitals and other settings out in the field. Professionals attending include teaching staff, social services, speech and language therapists and audiologists. Other courses are run for the patients themselves (such as the music workshop) or for the parents and wider family of an auditory implant user. The courses are very popular averaging 18 delegates per course over the last five years. Some of the courses such as the device troubleshooting courses are more practical and hands-on, giving delegates the chance to spend time handling and learning to troubleshoot the equipment. Other courses such as the Auditory Processing Disorder (APD) course give a more lecture style training day aimed at informing professionals about a topic, using the latest research findings to inform clinical practice. Our two workshops for grandparents, ( It s not just Cricket ) run in 215 were a huge success. The workshops were designed for other family members who fulfil a supportive role to a child with a cochlear implant. It aimed to provide a space where questions could be asked, emotions acknowledged and practical and relevant information presented. We were oversubscribed for each day and feedback was excellent. A thoroughly informative and helpful session. A great confidence boost By the end of the placement I was able to see patients independently and felt comfortable in my knowledge and skills. This training was challenging, stimulating and inspiring. It was a wonderful opportunity for which I am most grateful Clinical Placement We also offer a Try IT and Test IT day for our teenage CI users where they can learn about technology and using the telephone with their processor as well as having the opportunity to meet other CI users. This year we have been trialling running workshops in different locations across the South. The feedback from this has been excellent. We have managed to significantly increase (by 66%) the number of professionals who can now attend this course. 89% of attendees expressed the venues had reduced their travel time and costs. Some delegates noted that they would not have been able to attend a course at all had it not been done locally. We are therefore aiming to expand our locality based courses in the future. Education Programme USAIS staff are actively involved in the BSc and MSc teaching and clinical training of Audiology students at the University of Southampton. Approximately a third of all the staff is now engaged in academic teaching, across a range of modules. We also offer 12-week clinical placements at USAIS, the opportunity to work as part of our dynamic multi-disciplinary team, while acquiring clinical skills. A shorter one-week placement to observe our team is also possible. We offer professionals the opportunity to visit our Service for a day or two to observe patient sessions. Work experience opportunities are also provided. Student and professionals feedback about our Education Programme is consistently rated very good to excellent. 12 13

Audits and Research Clinical Audits The main aim of a clinical audit is to improve the quality of care and health outcomes for service users. At the beginning of 215, AIS produced a Clinical Audit Strategy, Clinical Audit Policy and a five year rolling clinical audit programme. The aim was to develop and implement an effective clinical audit programme in various clinical services provided by USAIS. The five year audit programme currently involves a number of clinical audits either initiated by staff members or requested by the NHS England Specialised Service Commissioners. Examples of clinical audits which have been completed or are currently in progress are: Checking immunisation status for all patients prior to implant surgery Increasing awareness of MRI safety for all implanted patients Monitoring middle ear status for children who are undergoing assessment Monitoring rehabilitation appointments for adults in the first year post-implant Ensuring staff knowledge related to infection prevention and control Ensuring staff knowledge related to our safeguarding policy and procedure Research Interests Current research interests include: Remote care and tele-medicine for long-term cochlear implant recipients Hearing preservation after cochlear implantation Individualised tuning based on imaging and listening tests Outcomes and experience of congenitally deaf adults with cochlear implants Music-based and self-directed rehabilitation Contact us Please feel free to contact us for further information. All enquiries to: University of Southampton Auditory Implant Service Building 19 Highfield Southampton so17 1bj United Kingdom Telephone: 23 859 3522 Email: ais@southampton.ac.uk Twitter: @UoS_AIS What Our Service Users Think Patients with Auditory Implants attending the Auditory Implant Service for a review are being asked the following question: How likely are you to recommend the University of Southampton Auditory Implant Service to friends and family if they needed similar care or treatment? with answers on a scale of extremely likely to extremely unlikely. This is known as the Friends and Family Test and is being used in Hospitals and Clinics used by NHS patients and service users as a way of assessing the quality of the organisation. Would you recommend AIS to your Family and Friends? (n = 727) 9% 88% Extremely likely Likely Neither Unlikely Extremely unlikely Don t know The Wordle graphic below shows some patient comments from the Family and Friends Test. The image gives greater prominence to words that appear more frequently in the text. deaf feel happy good cochlear information implant team treated care every years helpful positive staff always fantastic lovely people best help experience thank questions friendly first given process absolutely caring extremely wonderful better excellent like hearing everything treatment amazing impressed work together life class appointments pleased well servicefamily made never comfortable time brilliant make advice recommend nice respect understanding professional kind received ais told problems great welcoming listen changed patient everyone child support involved throughout yes centre decisions receive Southampton efficient 14

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