Developing and sustaining services for adults with severe profound hearing loss and those with complex needs

1. TAS Autumn 2009 1 Developing and sustaining services for adults with severe & profound hearing loss and those with complex needs Judith Bird, Sarah Creeke, Rob Ryman, Cherilee Rutherford, Laura Turton, Pauline Smith

2. TAS Autumn 2009 2 Thank you to all the team Today’s team Audiologists Judith Bird, Pauline Smith Otometrics Cherilee Rutherford, Kevin Carlyon Siemens Jennifer Shaw, Doreen Wilson, Michelle

3. TAS Autumn 2009 3 Content Services for S&P General issues Clinical quality Details on hearing aid verification: practical Additional technology Rehabilitation Services for patients with other complex needs Learning disabilities

4. TAS Autumn 2009 4 Requirements for specialist clinic for people with S&P hearing loss High level of clinician expertise in fitting in verification More time (communication difficulties) More testing More counselling and advice Consider other management options technical e.g. cochlear implants non-technical e.g family counselling

5. TAS Autumn 2009 5 Clinical quality Assessment Hearing aid fitting and verification Outcome measures Rehabilitation Onward referral / other services

6. TAS Autumn 2009 6 Assessment Using communication support as indicated Detailed history Detailed hearing assessment Air and bone conduction 3k and 6k Hz ULLs Specialised testing e.g. for dead regions For non-organic Needs / lifestyle assessment

7. TAS Autumn 2009 7 TEN test Threshold-equalising noise test v1 used dB SPL, v2 uses dB HL Measure a masked pure tone threshold, using TEN in same ear Noise will be very effective at masking tones that are being heard off-frequency Criteria for defining a cochlear dead region

8. TAS Autumn 2009 8 TEN test Reasons for testing counsel expectations (poor speech discrimination / perceived distortion) hearing aid settings / decision to aid / choice of aid may influence CI referral decision

9. TAS Autumn 2009 9 Reducing hearing aid gain High frequency dead regions above 1.7 x edge frequency (Vickers, Moore & Baer, 2001) Low frequency dead regions below 0.57 x edge frequency (Vinay and Moore, 2007) But be flexible based on the listener’s preferences

10. TAS Autumn 2009 10 Case study: effect on aid choice TEN test results 500 Hz – normal 750 Hz – raised thresholds (take as “edge frequency”) 1 kHz – could not test (noise too loud) Hearing aids 1.7 x 750 Hz = 1.3 kHz Reduce gain at freqs  >1.3 kHz Can fit less powerful, smaller aid

11. TAS Autumn 2009 11 Case study: effect on CI referral Female age 79 History HL and tinnitus for 30 years Lives alone Socially isolated Clinical IHR sentences 4/45 TEN test R 0.5 – 3kHz L 0.5 – 2kHz Outcomes Referred for CI Recommended for CI but outside NICE

12. Who to test using TEN Test is most useful for people with thresholds 60-80 dB HL /steeply sloping NAL-NL1 often prescribes little high freq gain, so finding an edge freq in mid freq range has most effect on the fitting Asymmetry makes it difficult due to cross hearing Ensure you instruct patient re loudness discomfort

13. TAS Autumn 2009 13 Fitting hearing aids NAL or DSL? Include bc thresholds? Linear or non-linear? Compression characteristics Threshold, ratio, time constants Omni-directional? Noise management? Freq compression?

14. TAS Autumn 2009 14 Further fitting considerations Fine tune according to dead region testing Use subjective patient reports Be very aware of previous amplification Use data logging Use data learning with caution Still need excellent earmoulds Care with feedback management

15. TAS Autumn 2009 15 One more point on hearing aids Try and reduce number of patients using obsolete hearing aids

16. And another point From S Manchester They replace their Super Power aids every 2 years as routine, having found much distortion after this length of heavy use

17. TAS Autumn 2009 17 Prescriptions There are two main types Generic e.g. NAL Manufacturer specific, e.g. Adaptive Phonak Digital They vary enormously Important to try and understand

18. TAS Autumn 2009 18 Prescriptions NAL National Acoustic Laboratory, Australian Typically used with adults Based on principle of optimising speech intelligibility at comfortable level Data mainly on SNHL Have been various versions, we use NAL-NL1 It prescribes insertion gain

19. TAS Autumn 2009 19 Prescriptions DSL Desired Sensation Level, Canadian Typically used with babies and children, but also with severe and profound losses Based on achieving audibility of speech Have been various versions, we currently use DSL [i/o] v4.1 It prescribes aided response, i.e. output

20. TAS Autumn 2009 20 Why we use a generic prescription NHS recommend NAL or DSL Evidence based Easier when switching aids Prescription is widely available in hearing aid software and in real ear measurement software

21. TAS Autumn 2009 21 Differences in NAL and DSL

22. TAS Autumn 2009 22 DSL m[i/o] v5.0 What’s new? Adult/acquired targets versus paed/congenital Bilateral fitting: 3dB reduction in target Conductive element leads to more gain Other changes Interpolation Compression thresholds Output limiting Quiet versus noisy environments

23. TAS Autumn 2009 23 Table 1 from Scollie, S. 2007

24. TAS Autumn 2009 24 Verifying hearing aids REM or RECD? What signal to use? What features to leave on What levels to measure? Gain or output?

25. TAS Autumn 2009 25 REIG REIG is prescribed by NAL It is the (aided gain) minus (unaided gain) or (aided response) minus (unaided response) Best for ears with typical size and shape Used for most of our patients but we can use REAR in NAL too

26. TAS Autumn 2009 26 REAR REAR is prescribed by DSL but can be used with NAL It is simply the aided output Best for ears that are atypical in size or shape especially babies/children whose ears are growing post-surgical ears ears with unusual open ear responses

27. TAS Autumn 2009 27 DSL v5 Aurical Recommended to use gain for v5 Or stay with output for v4 Unity Use output as usual

28. TAS Autumn 2009 28 What about conductives? Manufacturer’s fitting range does not take account into CHL, choose aid carefully An air bone gap means the patient will need more gain/output Start with ¼ air bone gap Fit to NAL or DSL, add a bit more, listen to patient’s response Tick the bc box REM software and verify to target which includes air bone gap

29. TAS Autumn 2009 29 What about severe & profound? Usually require a different approach If experienced users, they may know what they want Gain preferences likely to be influenced by current amplification so measure existing aids and counsel accordingly If feedback with REM, use RECD Small differences in gain may make large difference to audibility, especially if a small dynamic range

30. TAS Autumn 2009 30 REM and ac thresholds REM requires ac thresholds at 0.5, 1, 2 and 4 kHz If any are missing (e.g. 4 kHz >115 dB) then there is no target Check audiogram before you start and replot a sensible threshold, making a note in PMS about it.

31. TAS Autumn 2009 31 REM and bc thresholds If you tick the bc box, it requires bc thresholds, if any are missing then there is no target Untick the bc box and add gain according to patient response Or enter what you think is a sensible bc threshold wherever it is missing, making a note in PMS about it Enter triangle on both sides if sensible

32. TAS Autumn 2009 32 NAL-NL1 parameters

33. TAS Autumn 2009 33 NAL-NL1 parameters Understand what is needed Seek advice from hearing aid manufacturers e.g. Siemens will be revising their protocol Verification of Reflex aids with adaptive features off, using wide band signal, with limiting within NAL-NL1 parameter screen set to wide band Protocols WILL change

34. TAS Autumn 2009 34 Maximum output Measure REIG or REAR at 3 intensity levels, (50/55), 65 and 80 dB SPL Look at 80 dB trace on output screen to compare with ULL If 80 dB trace is within 10 dB of ULL, also measure at 90 dB SPL warble tone and compare with ULL Adjust MPO if necessary Check environmental sounds

35. TAS Autumn 2009 35 Why RECD? Can require as little as one in-situ measurement Then it’s possible to set up aid / use loud inputs in coupler rather than ear RECD trace can be saved so that: Follow up tuning very efficient Trial of other instruments possible without the patient No problem with feedback when probe tube is in-situ

36. What signals to use Pink noise, other broadband noise or swept warble tone for unaided and occluded gains Consider hearing aid manufacturer’s recommendations for REIG and/or REAR Understand rationale TAS Autumn 2009 36

37. Signals for WDRC aids If you can turn off adaptive features (noise reduction, directionality) and set to omni use static speech shaped noise (e.g. ICRA URGN-M-N) gives a more accurate result for averaged measurement If adaptive features on use modulated speech shaped noise Speech mapping .... TAS Autumn 2009 37

38. TAS Autumn 2009 38 (Signals for open fittings) Aurical if using stored equalisation in open REM mode (substitution-like method), as needed for open fittings, then the system uses swept warble tones Unity mute aid during calibration sound at the beginning of each measurement

39. TAS Autumn 2009 39 Practical session next

40. TAS Autumn 2009 40 Transition services: prescriptions Do not fit to NAL when a child reaches 18y Do not fit to DSL adult when a child reaches 18y Ensure paediatric /congenital prescription is selected if using DSL v5, even at age 18+ years

41. TAS Autumn 2009 41 Transition services Use MCHAS and NDCS guidelines Transition should be timed appropriately for the individual A good transition service should include: A written protocol A named Transition Worker Dedicated clinics Transfer of information to the adult team/PMS ALDs advice

42. TAS Autumn 2009 42 Pre-requisites for transition Written and verbal notice of transfer Current hearing aids and appropriate moulds Knowledge of their hearing loss Appropriate workplace or education support Knowledge of ALDs Information about the adult service Able to manage their HAs and appointments

43. SP clinics For young adults with severe disabilities transition may only be appropriate to dedicated clinics in the adult service

44. TAS Autumn 2009 44 Outcome measures GHABP / GHADP often not applicable Questions designed specifically for S&P Speech testing? Audio-visual speech testing? Ensure that patients’ own goals are realistic Not too limited Not too high either

45. TAS Autumn 2009 45 S&P questionnaire Designed by Graham Day, S Manchester Used by Laura Turton in M Sc dissertation 27 items 5 point scale, never-always Examples When you are at home with your family or friends having a meal, can you follow the conversation? If you hear a sudden loud sound (such as a door slamming shut) is it comfortable to your ears? Is available to you all

46. TAS Autumn 2009 46 Cochlear implants 2009 (Cochlear / The Ear Foundation)

47. TAS Autumn 2009 47 NICE guidelines, Jan 09 90 dB HL at 2 and 4 kHz without aids Adequate benefit from acoustic aids is defined as 50% or more on BKB sentences at 70 dB SPL for adults Must have had valid trial of acoustic h/aid for at least 3m Simultaneous bilat only recommended for adults if blind or other disabilities

48. TAS Autumn 2009 48 Message on CI referral Talk to your local CI service Know their guidelines Same applies to BAHA

49. TAS Autumn 2009 49 Other technology /support Additional devices Telephone adaptors Alerting devices Wireless listening devices / FM systems / loops / bluetooth Who should provide and fund?

50. TAS Autumn 2009 50 Other technology /support Social Services Access to Work / Student support Speech reading classes Local organisations Volunteer services? Rehabilitation programmes? Should we use in NHS?

51. TAS Autumn 2009 51 Communication support Speech to text Lip speakers Note takers BSL / English interpreters How to ensure information and support is there when its needed?

52. TAS Autumn 2009 52 Rehabilitation Understanding and accepting hearing loss Social confidence / assertiveness training Hearing tactics / communication strategies Family & friends involvement Speech-reading Auditory training Speech & Language therapy (re freq compression) Peer support / peer support groups Therapy / psychology

53. TAS Autumn 2009 53 Rehabilitation Programme LACE Listening and Communication Enhancement, Robert Sweetow Computer aided, on-line, runs at your own pace, can be done at home 30 minutes a day, 5 days a week, 4 weeks

54. TAS Autumn 2009 54 Hearing v listening “Hearing aids are getting better and better, but if patients don't learn how to use their brains to listen and help 'fill in the gaps' that the hearing aids can't provide, their benefit may be minimised.” Sweetow

55. TAS Autumn 2009 55 LACE Degraded and competing speech (70%) Background noise Compressed speech Competing speaker Cognitive (30%) Target word Auditory memory Missing word Speed of processing/linguistic and contextual cues Interactive communication strategies All modules are designed to enhance listening and communication skills and improve confidence levels

56. TAS Autumn 2009 56 Outcomes from LACE Study of 65 people showed most improved on LACE training tasks improvements were also seen in subjective and objective outcome measures Modify and use in NHS? Individual purchase Service in Leeds are using

57. TAS Autumn 2009 57 Rehabilitation Programme ACE Active Communication Education, Louise Hickson 2 h a week for 5 weeks with a facilitator, family & friends welcome

58. TAS Autumn 2009 58 ACE Older people with hearing loss, with or without aids Focus on communication rather than hearing Group defines most important problems and suggests solutions

59. TAS Autumn 2009 59 Outcomes from ACE Significant improvements in their reported communication activities and participation, and in their general well being Modify and use in NHS? Truro have developed a programme

60. TAS Autumn 2009 60 Peer group support Speech reading classes Group instruction after hearing aid fitting Self help groups / hard of hearing clubs Volunteer networks

61. TAS Autumn 2009 61 Learning Disabilities and Hearing Loss

63. TAS Autumn 2009 63 What is a Learning Disability? A significantly reduced ability to understand new or complex information to learn new skills A reduced ability to cope independently A disability that started before adulthood, with a lasting effect on development Valuing People (DOH 2001)

64. TAS Autumn 2009 64 Prevalence Estimates of 3-6% of the population has a learning disability Ratio of 3:1 in males to females In Coventry this has been estimated to 0.5% of the population – through known patients 1,500 patients Prevalence with a hearing loss is estimated at 30-40% 450-600 patients Why? Increased risk of middle ear problems Early onset presbyacusis Hearing loss can often be mistaken for the learning disability itself (& vice versa)

65. Legislation Valuing people (2001) – White paper their rights as citizens inclusion in local communities choice in daily life real chances to be independent Valuing Health for All (2003) Working with PCTs in improving health outcomes for people with a learning disability Disability Discrimination Act (2005) Mental Capacity Act (2005 ) how to make ‘best interests' decisions for people who lack capacity

66. TAS Autumn 2009 66 Making adjustments to the way we work

67. TAS Autumn 2009 67 Communication Difficulties IMAGINE not being able to read this not being able to tell someone else about it not being able to find the words you wanted to say opening your mouth and no sound coming out words coming out jumbled up not getting the sounds right words getting stuck, someone jumping in, saying words for you people assuming what you want, without checking with you not hearing the questions not being able to see, or not being able to understand, the signs and symbols around you not understanding the words, phrases or expressions not being able to write down your ideas being unable to join a conversation people ignoring what you are trying to say, feeling embarrassed, and moving away people not waiting long enough for you to respond in some way, assuming you have nothing to say, and moving away

68. TAS Autumn 2009 68

69. TAS Autumn 2009 69 General Communication with people with a learning disability Be prepared to use all your communication tools Speech Facial expressions Vocal sounds Body language Behaviour Symbols Signs Follow the lead of the person you are communicating with Go at their pace Check you have understood Be prepared to be creative

70. TAS Autumn 2009 70 Communication Considerations How to address the patient without treating them like a child How to speak to the key worker without excluding the patient How to gain rapport with the patient Does the patient have any verbal language? Do they use Makaton? Gestures?

71. TAS Autumn 2009 71 Involving Others Information about fitting needs to be given out to all parties Training sessions at Day Centres on hearing aid maintenance and deaf awareness should be available. Send information on appointments before patient visits – photos of what could happen in appt, and questionnaire to help with assessment Involve as many people in the patient’s hearing assessment as needed

72. TAS Autumn 2009 72 Multidisciplinary Approach

73. TAS Autumn 2009 73 Appointment Considerations Some patients won’t visit hospitals – may need Domiciliary Visits Don’t wear white coats It can take multiple appointments to assess their hearing – flexibility is needed Longer assessment times may be required First step is gaining their trust and looking in their ears Patient may need multiple follow ups to encourage use Constant support from Audiology. The client must consent to all the process – be aware it’s not up to the key worker

74. TAS Autumn 2009 74 Testing Considerations Don’t test in a room with a lot of distractions as patients can become fixated on one thing Use modifications on the paediatric tests – must be age appropriate though Testing is much easier with 2 people. Be aware that patients are often willing to please tester so may mimic, guess at stimulus May need bribery! But be flexible and imaginative when testing and taking ear moulds Focus on what the patient CAN do not what they can’t do

75. TAS Autumn 2009 75 Considering Amplification Why it is not always appropriate to aid an adult with a learning disability: Their motivation to use it Noise levels in Day Centres Patient may have a profound loss and the shock of amplification may be too much Patient may not want something in or around their ears Need to decide with each patient how much responsibility the patient will take for h/aid; increase this at each appt if appropriate Think about style, colour and type of amplification for each patient Outcome Measures

76. TAS Autumn 2009 76 Rehabilitation Considerations If not aided still provide: Wax removal Deaf awareness training to day centre / family Lip reading practice All literature has to be at an appropriate level for the patient Take a very holistic approach

77. TAS Autumn 2009 77 Final Thought Jo Williams Chief Executive of Mencap

78. TAS Autumn 2009 78 Further reading 1 Scollie, S (2007) DSL version 5.0: Description and Early Results in children. www.AudiologyOnline.com Souza, P (2009) Severe Hearing Loss – recommendations for fitting amplification www.AudiologyOnline.com Bird J. (2009) How to improve your services for patients with severe to profound hearing loss, BSA News. May 2009

79. TAS Autumn 2009 79 Further reading 2 Bagatto, M.P. (2001) Optimising your RECD measurements. The Hearing Journal, September 200, Vol. 54, No. 9 British Society of Audiology / British Academy of Audiology. 2007. Guidance for the use of real ear measurement in the fitting of digital signal processing hearing aids. http://www.thebsa.org.uk/docs/RecPro/REM.pdf

80. TAS Autumn 2009 80 Further reading 3 Gatehouse S, Naylor G, Elberling C (2006) Linear and nonlinear hearing aid fittings - 1. Patterns of benefit. IJA 45, 130-152 Gatehouse S, Naylor G, Elberling C (2006) Linear and nonlinear hearing aid fittings - 2. Patterns of candidature. IJA 45, 153-171 Keidser G, Dillon H, Dyrlund O, Carter L, Hartley D. (2007) Preferred compression ratios in the low and high frequencies by the moderately severe to severe-profound population. JAAA 18(1):17-33.

81. TAS Autumn 2009 81 Further reading 4 Moore, B. C. J., Glasberg, B. R., Stone, M. A., 2004. A new version of the TEN test with calibrations in dB HL. Ear Hear. 25, 478-487. Moore, B. C. J., Huss, M., Vickers, D. A., Glasberg, B. R., Alcántara, J. I., 2000. A test for the diagnosis of dead regions in the cochlea. Br. J. Audiol. 34, 205-224

82. TAS Autumn 2009 82 Further reading 5 Vinay and Moore, BCJ. (2007) Prevalence of dead regions in subjects with sensorineural hearing loss. Ear Hear 28, 231-241 Vickers DA, Moore BCJ & Baer T, (2001) Effects of lowpass filtering on the intelligibility of speech in quiet for people with and without dead regions at high frequencies. JASA, 110, 1164-1175

83. TAS Autumn 2009 83 Further reading 5 Keidser G, Brew C, & Peck A. How proprietary fitting algorithms compare to each other and to some generic algorithms. Hearing Journal 2003; March, 28-38. Knappett, R. (2009) Transition services: putting guidelines into practice. BSA News, August 2009.

84. TAS Autumn 2009 84 Further reading 6 NDCS. Transition from paediatric to adult audiology services in England, Guidelines for professionals working with deaf children and young people, April 2005. www.ndcs.org.uk DH Transforming services for children with hearing difficulty and their families: A Good Practice Guide, Sept 2008 http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_088106 Department for Children, Schools and Families (DCSF) and Department of Health (DH). A Transition Guide for all Services. Key Information for Professionals about the Transition Process for Disabled Young People. 2007 www.dcsf.gov.uk

85. TAS Autumn 2009 85 Further reading 7 Sweetow RW and Sabes JH, 2006. The need for and development of an adaptive Listening and Communication Enhancement (LACE) program, JAAA 17(8):538-58 Hickson, L. Worrall, L. and Scarini, N. 2007. A randomized controlled trial evaluating the active communication education program for older people with hearing impairment. Ear Hear Apr: 28(2): 212-30.

86. TAS Autumn 2009 86 Further reading 8 Learning Disabilities: The Fundamental Facts (2001) http://www.learningdisabilities.org.uk/publications/?esctl526505_entryid5=22345&p=8&char=ShowAll £22.50 Older people with Learning Disabilities (1998) http://www.learningdisabilities.org.uk/publications/?esctl526505_entryid5=15136&p=10&char=ShowAll Disability Discrimination Act (2005) http://www.opsi.gov.uk/Acts/acts2005/ukpga_20050013_en_1

87. TAS Autumn 2009 87 Further reading 9 Mencap (2006) Make it clear http://www.mencap.org.uk/document.asp?id=1579&audGroup=66&subjectLevel2=&subjectId=&sorter=1&origin=audGroup&pageType=&pageno=&searchPhrase= Valuing People (2001) http://www.archive.official-documents.co.uk/document/cm50/5086/5086.htm Mental Capacity Act (2005) http://www.opsi.gov.uk/acts/acts2005/ukpga_20050009_en_1