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Norbert Lieckfeldt | 28.07.2014

The Oxford Dysfluency Conference (ODC) is probably the biggest stammering-only Conference, held every three years in Oxford. This year, almost 200 researchers and clinicians from all over the world attended, presented and discussed issues around stammering. Norbert Lieckfeldt reports back.

St Catherine's College, with sculptureAnd once again, it's over and we're back home. Two and a half days of workshops, lectures, presentations, discussion, bar nights, and massive thunderstorms.

This has been my fifth ODC, the 10th overall. Organised once again by Dave Rowley and Sharon Millard, the programme proved to be more interesting than ever. For me, ODC is a testing ground whether what BSA tells the world about stammering is accurate (we're kind of accountable for that!) and it's inspirational - I always come away with new ideas (and more questions than when I arrived). When we have sufficient funds, I think it's useful to have as many BSA colleagues there as possible - but this year we only had funds for myself and my colleague Cherry, BSA's education officer. One concern (though no surprise) was that fewer NHS clinicians than previously were funded to attend. A huge thank you to my Co-Chairman of the Employers Stammering Network Iain Wilkie who gave up his Saturday to attend the Conference.

There were many sessions I could not attend, and I may have got some of the details wrong but from memory what I found most interesting (in no particular order) were:

Differences in brains of children who stammer

Professor Chang gave a presentation on the differences in the structures of children's brains. She got about 90 children, some as young as 3 years old, to lie still in an MRI scanner and her results - to me at any rate - end the discussion about whether the differences we know exist in older children and adults who stammer are the cause of stammering, or merely the brain's adaptation to stammering. Anatomical and functional differences are there, already shortly after onset.

I liked how Professor Chang clarified that these differences are within normal parameters, and that just by looking at brain scans of individuals it would not be possible with current technology to identify who's the person who stammers and who isn't - though this may well be possible in future. There was also a clear steer towards looking at what the clinical implications might be.

Therapy methods for Down’s syndrome

Monica Bray's presented on young adults and adults who stammer and who have Down’s Syndrome. There is a strong link between dysfluency and Down’s Syndrome, but usually traditional therapy methods aren’t very successful. I learnt that people with Down Syndrome (generalising hugely, as there is a wide range of ability amongst this population) are passive learners, ie learning through repeating what they hear rather than autonomous problem-solving; and that their memory problems mean that the strategies they themselves develop to deal with their speech tend to be remembered, whereas therapies taught by SLTs usually aren't.

So the role of the SLT might be to enhance and foster their self-taught strategies and techniques if they're helpful. I was also really heartened to see some excellent work done with people with autistic spectrum disorders.

Natural recovery rate for children receiving therapy

There's been some work done in Australia on the natural recovery rate for children in a clinical caseload (as opposed to every child who ever stammered). Elaina Kefalianos presented research on recovery by age of 7 years that seems to indicate that natural recovery rate in a clinical caseload of young children who stammer is between 65% and 74%.

This is lower than the generally accepted recovery rate of 80% - and it's important because if there is a difference between the number of all children who stammer and who recover naturally, and children who stammer and get referred to speech therapy and who then recover naturally, we need to know what this is - otherwise how can we evaluate whether any therapy is better than normal recovery?

An odd result here: one risk factor for boys not recovering from stammering would be a mother with tertiary level of education, ie a University degree. No explanation as yet for that one.

Treatment for social anxiety

Jan McAllister from Norwich was talking about her research into a relatively simple treatment method for social anxiety. We do know that therapy approaches like CBT are effective in dealing with issues such as these - social anxiety appears to be common in adults who stammer. However, it is often not available, as not many SLTs are trained in delivering it. She is currently looking into whether redirecting attentional bias (ie automatically focusing on the negative) is helpful for people who stammer. If it is, a simple, computer-based task of eight sessions of ten minutes each might be sufficient to effect this.

Self-help

In the Young Researchers section I enjoyed Terrence Murgallis's presentation on the benefits that adults who stammer gain from attending the self-help chapter he created at
Misericordia University in the US. Terrence is basing the work of his chapter on the group therapy principles of Irvin Yalom - a novel concept I've not heard of applied to stammering self-help before. And his results were very impressive!

Awareness raising courses at Stammering Support Centre

Also in the Young Researcher Section, Joanne Holmes’s presentation on the outcomes of the Awareness Raising courses run by the SSC in close co-operation with clients who stammer. It is really clear that having people who stammer taking part in these courses made the biggest difference in changing awareness of people in customer-facing roles (in this instance, NHS telephone receptionists).

Case study on neurogenic late-onset stammering

Prof Henny Bijleveld took us through a fascinating investigation into the cause of stammering that occurred in a 57 year old man as a result of an accident. It was originally linked to Post-Traumatic Stress Disorder which he suffered from after the event. But after forensically investigating a number of hypotheses(and excluding them one by one)  it became clear that the stuttering was the result of actual brain injury and not linked to PTSD, an injury that only showed up in scans a few months after the event when pervious scans showed no evidence.

Speech therapy and ‘social model’ of disability

Katy Bailey, Sam Simpson and St John Harris took us through their presentation on Speech Therapy and the Social Model of Disability - is there space for stammering in therapy? Are we too focused on fluency? Or is an SLT’s basic attitude that we come to therapy to be 'fixed' merely perpetuating the stigma that surrounds stammering. Is stammering something that needs to be 'fixed' or do we need help in addressing the barriers that prevent us from participating fully in life - and that can lead to self-oppression, to people who stammer themselves believing the negative stereotypes around stammering. We'll hear more of this, no doubt!

The final morning held two special treats - Marie-Christine Franken's research and the presentation of the proposed Croatia Protocol:

Comparing effectiveness of therapy approaches for children who stammer

Marie-Christine presented on a large study in the Netherlands, comparing outcomes for children who stammer. It was a Randomised Controlled Trial - half the children were treated with a Dutch therapy approach based on the traditional Demands and Capacities model (DCM), the other half were treated with the Lidcombe approach.

The research question was whether there was any difference in outcome between the two cohorts (the question was NOT whether either of them were more effective than natural recovery).
It was clear from her research that in essence there were no differences in outcome - Lidcombe seems to be more effective in terms of reduction of stammering in the first three months, but this difference disappears over the 18 months follow-up. Equally DCM therapy seems to be more effective in children whose stammering is more severe, but not significantly so.

In terms of health economics, delivering Lidcombe was marginally more expensive, but not significantly so. In terms of QALY (Quality of Life Years), the measure used by the NHS to assess whether an intervention is cost-effective, both seem to be well below the "too expensive for what they deliver" threshold so should be funded.

So we are left with a clear choice for parents regarding their therapy preference - and a need for therapists, if they wish to be client-led, to be able to deliver both approaches. DCM and the UK's PCI method share many common elements but are not actually the same approach.

Croatia Protocol: unified outcome measure

Suzana Jelcic-Jaksic from Zagreb talked about the Croatia Protocol - not a new John le Carré spy thriller, but an attempt to propose a unified outcome measure for clinical trials of stuttering therapy. RCTs only allow two primary outcome measures. The Croatia Protocol proposes that the primary outcome measure of every clinical trial should be "Does this intervention increase the client's satisfaction with his/her everyday communication" (because, as Suzana said, if the intervention cannot show that it achieves this, what would be the point delivering it?).
This is important as RCTs can be used to carry out a meta-analysis of research across the whole sector - but without generally agreed outcome measures this isn't actually possible. It's potentially a significant step forward in making stammering research more meaningful.

This was a small taste of the smörgåsbord of talks and presentations. If you're interested in stammering, or work in stammering therapy, I urge you to start putting £15 aside every month for the next one!

BSA's Education Officer Cherry Hughes adds

To add my brief comment I particularly enjoyed these:

Malta

Joseph Agius on the Fluency: Smart Intervention Strategy (SIS), an application for SLTs to use with school age children who stammer.

This is a program which encourages creativity and humour during intervention sessions. The SIS consists of four components with different activities included:

  1. Think Smart, Feel Smart
  2. Cool Speech
  3. Challenge the Dragons
  4. Into the ‘Real’ World

The Smart Intervention Strategy is a re-shaped stuttering modification approach. Intervention aims to develop confidence in speaking and permission to stutter, not change the way the child speaks. The goal is to become an efficient, confident communicator. Using creativity and humour, speaking becomes fun and enjoyable.

UK

Professor Peter Howell (UCL) described work on a screening tool to identify Reception class children who stammer and have other speech problems. I welcome this as teachers usually concentrate on the assessment of expressive language rather than speech.

Sarah Costelloe (University Campus Suffolk) reported on a study on differences in attention levels between children who stammer  (CWS) and children who do not stammer (CWNS).The direct measure of attention used was the Test of Everyday Attention for Children (TEA-Ch), together with parental report using a Behaviour Style Questionnaire (BSQ). Fifteen participants were included in each of the above groups (recovered CWS, persistent CWS and CWNS) in the age range of 6-9 years.CWS scored lower on attention than CWNS, but recovered CWS did almost as well as CWNS. This supports anecdotal experience and shows the importance of early intervention when recovery is most likely.

I also had the great pleasure of talking with Helen Barker of the Dominic Barker Trust which has funded the important UK research described.
 

Some final impressions from Iain Wilkie, Partner at EY (Ernst & Young) and founder and Chairman of the Employers Stammering Network:

The Oxford Dysfluency Conference is supported by the Stuttering Foundation and Action for Stammering Children.