Dear Editor-in-Chief
The goal of the study was to conduct a preliminary survey and determine the number of people who could benefit from augmentative alternative communication (AAC) in selected clinics of Armenia using an epidemiological approach. There is little epidemiological evidence available regarding the prevalence of need for AAC. The reviews of existing data in different countries rely on collating studies.
Figures used to estimate AAC need in different countries need to be reviewed on a regular basis because of increasing prevalence of children with disabilities surviving longer (1); the prevalence of individuals living with complex neurological conditions; longevity; the availability of sophisticated AAC strategies and equipment; and expectations of individuals and their families (2).
AAC encompasses a range of methods and techniques used by people who have impairments of speech, language, and communication. It includes technologies such as computerized systems and voice output communication aids and non-technological systems such as symbols and picture charts.
This research attempted to ask the following questions in order to determine the prevalence of people who could benefit from AAC: How many people are there with each of these medical impairments/disorders? How many of those people with the listed medical condition have speech, language and communication needs? How many of those people with speech, language and communication needs with the listed medical impairments/disorders could benefit from AAC?
A list of medical disorders of those people who could benefit from AAC was generated using a systematic literature review (3,4) and consultation with AAC professionals. The questionnaire used in the survey was adapted from a trial conducted in the UK (5). General practitioners - doctors working in 3 clinics of different cities in Armenia took part in the study. The survey tried to identify also the awareness of medical professionals about the AAC technologies.
There were 39 medical disorders identified through a systematic literature review. Table 1 shows that 169 people have one of these conditions. There are 104 people who have speech, language or communication needs to be associated with these conditions, and there are 54 people who could benefit from AAC. Only 3 from 24 medical professionals had information about AAC technologies and none of them have applied AAC in practice.
Table 1:
Prevalence of augmentative alternative communication (AAC) need in selected population
| Have you heard of AAC technologies before | Yes (3) | No (21) | |
|---|---|---|---|
| Have you applied AAC technologies for your patients | Yes (0) | No (24) | |
| Diseases and Syndromes | Number of patients | Number of patients that have a speech problem | Number of patients withspeech problems that need AAC |
| Stroke/CVA | 16 | 10 | 6 |
| Head/brain injury | 14 | 9 | 6 |
| Multiple sclerosis | 6 | 3 | 1 |
| Motor neuron disease | |||
| Parkinson’s disease | 17 | 13 | 8 |
| Dementia/Alzheimer’s | 28 | 15 | 10 |
| Friedreich’s ataxia | |||
| Multiple systems atrophy | |||
| Head and neck cancer | 4 | 3 | 3 |
| Guillain–Barre syndrome | 3 | 2 | - |
| Cleft palate | 7 | 6 | - |
| Craniofacial abnormalities | 3 | 2 | - |
| Vision impairment Hearing impairment | 12 | 9 | 2 |
| Multisensory impairment | |||
| PMLD Autistic spectrum disorder (ASD) Developmental delay | 10 | 8 | 4 |
| Other learning disabilities | 12 | 10 | 6 |
| Down syndrome | 2 | - | - |
| Angelman syndrome | |||
| Huntington’s disease | |||
| Prader–Willi | |||
| Rett syndrome | |||
| Williams syndrome | |||
| Cerebral palsy | 18 | 8 | 4 |
| Specific language impairment | |||
| Muscular dystrophy | 3 | 1 | - |
| Myasthenia gravis | 2 | - | - |
| Leigh’s disease | |||
| Absence epilepsy | |||
| Arthrogryposis (developmental non-progressive) | |||
| Burns | 2 | 1 | 1 |
| Cerebellar ataxia | |||
| Chromasomal mosaicism | |||
| Meningo-encephalitis | 4 | 2 | 1 |
| Merrf syndrome | |||
| Mitochondrial cytopathy | |||
| Multi-systems atrophy | |||
| Schizencephaly | |||
| Vocal cord palsy | 2 | 2 | 2 |
| Voice disorder | |||
| Total | 169 | 104(61.5%) | 54 (51.9%) |
There is a large number of other more rare diseases for which we have insufficient information to arrive at a reliable estimate. People often have comorbidities, for example, cerebral palsy with learning disabilities. However, the data are for primary evaluation so this effect should be minimal.
Two conditions that represent 26.6% of the cohort consist of Alzheimer’s/dementia and Parkinson’s disease. The next sizeable cohort of people who could benefit from AAC were those with autistic spectrum conditions, learning disabilities, stroke/CVA, cerebral palsy, head/brain injury, profound, and multiple learning difficulties and motor neuron disease. 75.1% of people who could benefit from AAC have 8–10 conditions.
Current figures for use of AAC do not fully represent the national picture and broader study is required to get accurate estimates. No similar studies have been conducted in other countries of the region.
Footnotes
Conflict of interest
The authors declare that there is no conflict of interests.
References
- 1. Strømme P, Bjørnstad PG, Ramstad K. (2002). Prevalence estimate of Williams syndrome. J Child Neurol, 17: 269– 271. [DOI] [PubMed] [Google Scholar]
- 2. Tagliaferri F, Compagnone C, Korsic M, et al. (2006). A systematic review of brain injury epidemiology in Europe. Acta Neurochir (Wien), 148( 3): 255– 68. [DOI] [PubMed] [Google Scholar]
- 3. Baxter S, Enderby P, Evans P, et al. (2012). Barriers and facilitators to the use of high-technology augmentative and alternative communication devices: a systematic review and qualitative synthesis. Int J Lang Commun Disord, 47( 2): 115– 29. [DOI] [PubMed] [Google Scholar]
- 4. Baxter S, Enderby P, Evans P, et al. (2012). Interventions using high-technology communication devices: a state of the art review. Folia Phoniatr Logop, 64( 3): 137– 44. [DOI] [PubMed] [Google Scholar]
- 5. Creer S, Enderby P, Judge S, John A. (2016). Prevalence of people who could benefit from augmentative and alternative communication (AAC) in the UK: determining the need. Int J Lang Commun Disord, 51( 6): 639– 653. [DOI] [PubMed] [Google Scholar]