Royal College of Speech & Language Therapists - Setting research priorities for learning disability and developmental language disorder (DLD)

1. RCSLT WalesRCSLT Research priority setting project
Setting research priorities for learning
disability and developmental language
disorder (DLD)
2nd March 2019
#DLDresearchpriorities
#devlangdis

2. Aims and objectives
 To give an overview of the priority setting process and
work so far
 To consider dissemination of the learning disabilities
research priorities
 To reflect on and discuss your views on research
priorities for developmental language disorder
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3. Format
 Overview of the project
 Dissemination of research priorities activity
 What is developmental language disorder?
 What are the priorities for developmental
language disorder- activity
 Feedback ideas
 Questions
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4. Overview of the research
priority setting project
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5. 5
Why research priority setting?
 Quality services
 Gaps in evidence of ‘what works’
 Research collaborations seek RCSLT
support
 Co-produced research priorities influence
what research is funded
New research that matters

6. The approach
1. What already exists?
2. What do SLTs say?
3. How could we set priorities?
4. Partnership with NIHR
6
James
Lind
Alliance
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7. Where do we start?!
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Dysphagia (swallowing disorders)
Developmental language disorder
Selective mutism Aphasia
Mental health
Learning disabilities
Speech sound disorder
Looked after children
Dysarthria
Traumatic brain injury
Progressive neurological disease
Hearing impairment/ Deafness
Autism
Augmentative and alternative
communication
Bilingualism
Cleft lip and palate
Craniofacial conditions
Critical care Respiratory conditions
Voice
Head and neck cancer
Dementia
Dysfluency
Multi-sensory impairment
Neonatal care
Public health
Social communication disorder
SEMH
Trans and gender-diverse voice
and communication
Visual impairment

8. 5 priority areas
1. Dysphagia
2. Learning disabilities
3. Language disorders in children
4. Language disorders following stroke/head
injury (aphasia)
5. Autism
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9. Which areas have we
targeted so far?
 Dysphagia
 Learning disabilities
Now
 Developmental language disorder
Later
 Autism
 Aphasia
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10. 10
Gather
uncertainties
Analyse and
incorporate
service user
views
Gather
service user
views
Identify
discussion
themes
Multi-
stakeholder
workshop
RCSLT/NIHR approach

11. 11
Collate
questions
Refine
questions in
second
workshop
Map them to
uncertainties
Develop
prioritisation
questionnaire
Identify top 10
research
priorities
Promote!
Measure
activity and
impact

12. An iterative process
 Increasing public and patient involvement in the
project
 Specific versus broad themes
 What is the best way to display the priorities
 Promotion of priorities and links with funders
 How can we identify, monitor and measure
impact?
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13. PPI involvement- test-bed
project
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14. Top 10 learning disabilities
priorities
1. Effective dysphagia interventions for people with learning disabilities to achieve
personalised and holistic outcomes
2. Inclusive communication environments and staff’s skills in supporting speech,
language and communication needs of people with learning disabilities
3. Impact of a multi-disciplinary approach to dysphagia management for people
with learning disabilities
4. Most appropriate ways of measuring long term personalised and holistic outcomes for
a) people with learning disabilities and b) their parents/ carers
5. Effectiveness of different service models of SLT input for people with learning
disabilities to reach personalised and holistic outcomes
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15. 6. Facilitators and barriers to instrumental assessment of swallowing for people with
learning disabilities
7. Presentation of eating and drinking difficulties for people with learning disabilities
across the lifespan and their associations with dysphagia (including aspiration, choking,
safety, nutrition and hydration and enjoyment)
8. Selecting appropriate approaches to information gathering for individualised and
holistic SLT assessment for people with learning disabilities
9. Level of SLT input (including timeliness, dosage, intensity and frequency) in
achieving and maintaining long-term personalised holistic outcomes for people
with learning disabilities
10. The SLT role in end of life care for people with learning disabilities
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16. 16
The priorities will be used to make
decisions
What to fund
Support to external research bids
Collaborative work
RCSLT projects
Student projects

17. Over to you…
How can we disseminate the priorities
effectively?
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Look at the ‘research priorities
dissemination’ sheet

18. Setting research priorities for
developmental language
disorder
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19. But what is DLD?
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20. CATALISE
Criteria and Terminology Applied to Language Impairments:
Synthesising the Evidence
 Group of 57 experts in children’s language disorders from English
speaking countries including:
- Speech and language therapists
- Education
- Medicine
- Psychology
- Audiology
- Charities
Aim: to seek consensus on identifying children requiring support above
and beyond what is available in the classroom
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21. RCSLT (2017), adapted from Bishop et al. (2016) 21

22. Bishop et al. 2016
Risk factors:
• SES
• EAL
• Family history
• Neglect/ abuse
• Prenatal/perinatal
• Male
Co-occurring
disorders:
• ADHD
• Motor skills
• Literacy
• Speech
• Exec. Function
• Behaviour
• Adaptive behaviour 22

23. Diagnostic criteria
 Difficulties lead to functional problems with
communication or learning in everyday settings
 With indicators of poor prognosis
 When the language disorder is not associated
with another biomedical condition
 Impairments in cognitive, motor or behavioural
domains can co-occur with DLD
Developmental Language Disorder
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24.  Socio-economic status not used as an
exclusionary factor
 Non-verbal IQ not used as criteria as no
evidence to suggest those with low average
non-verbal IQ won’t respond to intervention
 Spiky profile/ delay v disorder not used
 Ongoing assessment and monitoring should
take place to reflect changing needs,
demands and priorities over time
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Norbury et al. 2016

25.  A diagnosis should be accompanied with information about impact
on language domains:
- Phonology
- Grammar (syntax and morphology)
- Semantics
- Word finding
- Pragmatics
- Verbal learning and memory
- Predicting prognosis in the early years is difficult. Language is
reasonably stable by age 4 (Klem et al. 2016)
- Difficulties persist into adulthood and beyond (Nippold et al. 2009)
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26. What does not meet criteria for
language disorder?
 Late talkers with few indicators of poor
prognosis
 Poor phonological awareness as a stand
alone difficulty
 Children learning more than one language,
unless there is evidence of meeting DLD
criteria in their home language
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27. What about children with an existing
diagnosis of Specific Language Impairment?
A change in diagnostic terminology should not result in
withdrawal of services or SLT input
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28. Work on the priorities so far
 Gathering uncertainties
 Service user workshops
 Parent workshops
 Multi-stakeholder workshop
Have your say! We would value the views
of other educational professionals
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29. Parents with
direct
experience of
DLD
Speech &
Language
Therapists
Health professionals
External stakeholders
People with DLD
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Researchers
Education professionals

30. Over to you…
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What do you think the priorities are for
research into developmental language
disorder?
Look at the ‘research
suggestion discussion form’

31. Next steps
 Collate the information gathered today
 Refine research ideas
 Incorporate service user information
 Prioritisation activities
 Launch priorities
 Promote priorities
 Gather information about impact and work
done on these
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32. What can you do?
 Share information about today with your colleagues and
parents
 Get in touch with us if you know schools/ children with
DLD/ parents that would like to be involved
 Complete and share the prioritisation questionnaire
 Inform us of relevant stakeholders to share our priorities
with
 Add name to mailing list for further opportunities to get
involved
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33. Any questions?
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34. Useful links/ information
 RCSLT research priorities project pages
 INVOLVE
 James Lind Alliance
 People in research
 National PPI standards test-bed project
 NAPLIC
Contact lauren.longhurst@rcslt.org
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