The Hearing and Learning Disabilities (HALD) group are a multi-disciplinary team of professionals with an interest in the Audiological needs of adults with learning disabilities. Our membership is from a range of professional backgrounds including Audiology, Speech and Language Therapy, Hearing Therapy, Audiological Medicine, Community nursing and Social Care
The following “Key Messages” aim to provide information regarding the audiological care for people with learning disabilities (PwLD) drawing on current evidence, guidelines and collective experience of the HALD members.
1) There is a high prevalence of hearing loss in PwLD
The prevalence of hearing loss in PwLD is 30-42% [1] [2] [3]. These prevalence figures include individuals with both syndromic and idiopathic learning disabilities. This prevalence of hearing loss in PwLD increases with age [4].
Additionally, PwLD have been found to have a high prevalence of ear wax sufficient to affect hearing thresholds [3] [5]. This can have implications on ear health and cause unnecessary reduction in hearing. A significant number of hospital appointments are wasted every year due to patients attending with too much ear wax to allow accurate hearing assessment or audiological management.
2) The majority of PwLDs with hearing loss are currently unknown to Audiology services
Currently the number of PwLD known to Audiology services across the UK suggest that only a small fraction of those with a learning disability and hearing loss have been referred to Audiology services.
PwLD are unlikely to be able to seek help appropriately for a hearing loss either because they are unaware of/unable to access the system, or are not aware of their condition. Studies have shown that even long-term carers are unable to reliably recognize when someone with LD has a hearing loss [1] The inequality in accessing health services by PwLD is very apparent within Audiology.
3) Almost all PwLDs can have their hearing assessed
In the experience of the members of the Hearing and Learning Disabilities special interest group, only a very small proportion of PwLD cannot have their hearing assessed, typically less than 2% of this patient group. Behavioural methods can be adapted very successfully for these patients and electrophysiological techniques can also be used to assess the hearing in the vast majority of PwLD irrespective of extent of intellectual impairment. Additionally, free field testing is usually available to assess hearing in individuals with tactile defensiveness in a specialist service.
4) There is a strong need for Specialist Audiology services for PwLDs
Mainstream clinics are unlikely to fully meet the needs of a proportion of PwLD for a variety of reasons such as patients’ inability to carry out standard hearing tests, patients’ anxiety, tactile defensiveness and challenging behaviour.
Current guidelines stipulate “A specialist service for people with learning disabilities should be established within current audiology services.” [6]. Within a specialist clinic reasonable adjustments [7] can be made appropriate to the patient’s needs. Staff experienced with PwLD will be more likely to obtain reliable information and set up appropriate rehabilitation including amplification, communication strategies and desensitization as required. Many current services find benefit in providing an MDT approach to specialist clinics for PwLDs. Such teams may consist of Audiologists, speech and language therapists, clinical scientists and audiological physicians. Typically there would be a requirement for the clinic to be staffed by 2 specialist clinicians for at least the first appointment.
In addition to relevant staff a specialist clinic should typically be held in an appropriate room with the equipment specific to the assessment and audiological management of PwLD. It is recommended that appointment times are longer due to the increased time required with this patient group [6].
5) Audiological management and amplification improves Quality of Life for PwLD
Behaviour can be dramatically affected by sensory issues [8] in PwLD affecting both the patients and their families and carers. Hearing aids improve adults' Health Related Quality of Life by reducing psychological, social, and emotional effects of SNHL [9]. This includes patients with profound and multiple learning disabilities who can benefit from access to environmental information.
6) There is a strong need for hearing screening programmes and regular hearing assessment in PwLDs
The use of the Cardiff Health Check within the Directed Enhanced Service (DES) currently relies on the patient/carer highlighting whether there are any concerns however it is known that carers are unable to reliably report on hearing loss [1] Studies relying only on otoscopy and carers' opinions have consistently found the prevalence of hearing loss to be significantly lower (1-2%) than those in which hearing screening was carried out (30-42%) [10] [11] It is proposed that the questions addressed on the checklist be amended to conform with the recommendations made by the International Association for the Scientific Study of Intellectual Disabilities (IASSID) [12]:
· Has the patient ever had a hearing screen?
· For those aged 40 and over, has the patient had a hearing screen within the past 5 years?
· For those with Down's syndrome (regardless of age), has the patient had a hearing assessment within the past 3 years?
If the answer to any of the above questions is no, a referral to audiology should be made. For appropriate appointment planning as much information as possible regarding patients’ level of functioning and abilities is required from the referral. Currently a significant number of appointments are unproductive due to insufficient information present in the referral.
Current guidelines stipulate the need for both screening and regular hearing assessment for PwLDs:
· We recommend screening of visual and hearing functions in all children and adults with
an intellectual disability that have never been assessed or of whom no diagnostic data are
available [12]
· We recommend … for adults with Down’s syndrome…screening of their hearing function every 3 years throughout life [12]
· We recommend that district referral systems are developed for diagnosis, treatment and
intervention of visual and hearing impairment in children and adults with an intellectual
disability and for screening of non-cooperative individuals. [12]
· All patients with learning disabilities and hearing impairment should be reviewed at regular (yearly) intervals [6]
Key Messages
1) There is a high prevalence of hearing loss in PwLD
2) The majority of PwLDs with hearing loss are currently unknown to Audiology services
3) Almost all PwLDs can have their hearing assessed
4) There is a strong need for Specialist Audiology services for PwLDs
5) Audiological management and amplification improves Quality of Life for PwLD
6) There is a strong need for hearing screening programmes and regular hearing assessment in PwLDs
References
[1] Wilson D.N. & Haire A. (1990) Health care screening for people with mental handicap living in the community. Brit Med J 301, 1379-1381.
[2] Meuwese-Jongejeugd A, Vink M, van Zanten B, Verschuure H, Eichhorn E, Koopman D, Bernsen R, Evenhuis H. (2006) Prevalence of hearing loss in 1598 adults with an intellectual disability: cross-sectional population based study. Int J Audiol. Nov;45(11):660-9.
[3] Neumann K, Dettmer G, Euler HA, Giebel A, Gross M, Herer G, Hoth S, Lattermann C, Montgomery J. (2006) Auditory status of persons with intellectual disability at the German Special Olympic Games.
Int J Audiol. Feb;45(2):83-90.
[4] Evenhuis HM. (1995) Medical aspects of ageing in a population with intellectual disability: II. Hearing impairment. J Intellect Disabil Res. Feb;39 ( Pt 1):27-33.
[5] Hild U, Hey C, Baumann U, Montgomery J, Euler HA, Neumann K. (2008) High prevalence of hearing disorders at the Special Olympics indicate need to screen persons with intellectual disability. J Intellect Disabil Res. Jun;52(Pt 6):520-8.
[6] Audiology Services Modernisation, NHS Scotland, (2009) Guidelines for Meeting Audiological Needs of Adults with Learning Disabilities
[7] Sue Turner and Carol Robinson (2011) Reasonable Adjustments for People with Learning Disabilities – Implications and Actions for Commissioners and Providers of Healthcare.
[8] Wieseler NA, Hanson RH, Nord G. (1995) Investigation of mortality and morbidity associated with severe self-injurious behavior. Am J Ment Retard. Jul;100(1):1-5.
[9] Chisolm TH, Johnson CE, Danhauer JL, Portz LJ, Abrams HB, Lesner S, McCarthy PA, Newman CW.
A systematic review of health-related quality of life and hearing aids: final report of the American Academy of Audiology Task Force On the Health-Related Quality of Life Benefits of Amplification in Adults. J Am Acad Audiol. 2007 Feb;18(2):151-83.
[10] Barr O, Gilgunn J, Kane T, Moore G. (1999) Health screening for people with learning disabilities by a community learning disability nursing service in Northern Ireland. J Adv Nurs. Jun;29(6):1482-91.
[11] Baxter H, Lowe K, Houston H, Jones G, Felce D, Kerr M. (2006) Previously unidentified morbidity in patients with intellectual disability. Br J Gen Pract. Feb;56(523):93-8.
[12] International Association of Scientific Studies on Intellectual Disability (IASSID), Special Interest Research Group on Health Issues (2002) Early Identification of Hearing and Visual Impairment in Children and Adults with an Intellectual Disability: International Consensus Statement Recommendations