Award of Funding in relation to children’s ASD diagnostic services in Wales:
End of award summary
Purpose of funding.
Funding was awarded for the development of methods of diagnostic practice with
the goal of enhancing evidence-based practice in the diagnosis of Autism Spectrum
Disorder (ASD). The work aimed to provide the groundwork for training and skill
development in diagnostic work to support the optimal delivery of multidisciplinary
team working practice. As outlined in the original recommendations in the report
on Children’s Diagnostic Services, methods of diagnostic practice need to be
developed in order to enhance greater skill and efficiency in the use of tools for
diagnosis by clinicians. The work provided links with the newly established Adult
ASD Clinical Network (Diagnosis and Post-Diagnostic Counselling Network) and
the funding enabled development and testing of the adaptation of algorithms for the
Diagnostic Interview for Social and Communication Disorders (DISCO) for use
with children, and the readiness of this interview for use within children’s
diagnosis services.
Nature of the work
The Diagnostic Interview for Social and Communication Disorders (DISCO) is a
well-established, widely-used clinical interview to assist in the diagnosis of Autism
Spectrum Disorder (ASD). This in-depth interview provides a detailed profile of an
individual’s strengths, needs, and difficulties. However, like other standardised
clinical interviews such as the Autism Diagnostic Interview, it is time-consuming to
administer. Consequently, the use of these interviews in a clinical setting is not
standardised, contributing to discrepancies between diagnosis across clinics and
health boards.
The Abbreviated DISCO has been developed for use in the Adult ASD Clinical
network (Diagnosis and Post-diagnostic Counselling Network). The advantage of
this tool is that it can reduce the time for carrying out the main diagnostic
procedure for straightforward cases and save time also if a referral is needed for a
more complex assessment using the full DISCO. The current programme of work
involved extensive development and testing of the abbreviated tool for use with
children and readiness for children’s services.
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Following the grant award (20/3/2013), abbreviated algorithms were developed and
tested for the DISCO to enhance greater efficiency in the use of tools for diagnosis
by clinicians. Detailed analyses were conducted to ensure the efficiency of this tool
involving specialist statistical expertise and further plans developed to enable ongoing assessment of the tool within clinical pathways. Plans were developed for the
training of clinicians in the use of this tool in collaboration with clinicians in the
Aneurin Bevin and Betsi Cadwaladr University Health Boards. Materials were
developed to support this training and for use in coordination with other diagnostic
methods (ADOS/ADI).
The programme of work had four primary targets:
1. The development of diagnostic algorithms suitable for use in children’s
diagnosis outcome assessments in accordance with international classification
systems
2. Contribution to a manual that will summarise the psychometric results
3. Recording and production of a training DVD showing examples of interviews
for clinicians.
4. Training plan implemented with Ann Marie McKigney’s team – Aneurin
Bevin Health Board (with advice sessions to Dr. Dawn Wimpory Betsi
Cadwaladr UHB).
The work that was carried out achieved each of these targets as outlined below.
1. Diagnostic algorithms
A clinical diagnosis of ASD is made by a multidisciplinary team. The team takes
account of pattern of symptoms and needs presented by a child. For assessing the
symptoms themselves, clinicians can use standardised diagnostic methods which
contain diagnostic ‘algorithms’. Algorithms are the rules used to combine symptoms
together in order to arrive at a standard diagnostic label (e.g. ICD-10 Childhood
Autism). The Abbreviated DISCO algorithm for children’s diagnosis was developed
in consultation with clinical colleagues (particularly Dr Judith Gould) and developed
from previously published algorithms for diagnosis according to ICD-10 (Leekam et
al., 2002) and DSM-5 (Kent, Carrington, et al., 2013). The new Abbreviated
algorithms have also been written to map onto the new international DSM-5
guidelines. The algorithms developed by the work described below can help to guide
clinicians in the diagnostic process but should not replace clinical judgement by a
multidisciplinary team.
The new algorithms were tested statistically on data collected from a total of 327
children and adolescents aged between 24 and 208 months. 233 of these children had
a clinical diagnosis of either Childhood Autism (CA; ICD-10) or Autism Spectrum
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Disorder (ASD; DSM-5) while 94 had non-autism diagnoses of either intellectual
disability (ID) or language impairment (LI). Statistical analyses were performed to
investigate the power of these abbreviated algorithms to correctly identify children
with a clinical diagnosis of CA or ASD. Furthermore, the performance of the
abbreviated algorithms was compared with the ‘full’ algorithms for these diagnoses
(Kent, Carrington et al., 2013; Leekam et al., 2002). These analyses revealed that the
abbreviated algorithms can be used to accurately identify individuals with a diagnosis
of either CA or ASD and they do not incorrectly identify children with a diagnosis of
ID or LI. Moreover, agreement with the ‘full’ algorithms was excellent.
An additional set of 16 items that may be used to highlight cases for referral were also
identified from within the abbreviated algorithms. Using just these 16 items (referred
to as the ‘signposting’ set), it was possible to identify 99% of the 233 children and
adolescents with a clinical diagnosis of CA or ASD. In addition, the signposting set
identified only 11 of the 94 children with ID or LI, indicating that it is a very specific
set of items. A self-report version of the signposting set were trialled with a sample of
typically developing young adults and compared with answers on a well-established
questionnaire screening measure (the Autism Quotient; AQ). This comparison
revealed moderate correlations between scores on the signposting set and the AQ,
providing preliminary evidence supporting the use of the signposting set as a measure
of autistic traits. Taken together, these results suggest that the signposting set could be
a highly efficient tool for highlighting cases for referral. However further research is
needed with children.
Although the results for both the abbreviated algorithms and the signposting set are
highly encouraging, it is essential that further research is carried out into the efficacy
of these algorithms when used within a standard clinical diagnostic pathway. The
work developed during this grant period therefore helped to pave the way for a new
grant application to the Cardiff University Wellcome Trust Institutional Strategic
Support Fund (WTISSF) to carry out this work in collaboration with clinicians in
South Wales (Mrs. Anne-Marie McKigney and Dr Alka Ahuja) and Newcastle
(Professor Ann Le Couteur). As part of this proposed programme of work, the
abbreviated algorithms will be compared with an established, widely-used diagnostic
interview, the ADI-R. Additional work is also underway to investigate whether the
inclusion of an abbreviated algorithm for Gillberg’s Asperger Syndrome may
contribute to the diagnostic process.
2. Contribution to manual
The psychometric analyses described above represents the contribution from the
Wales Autism Research Centre to the manual for the abbreviated DISCO that will be
produced by the Lorna Wing Centre.
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3. Training DVD.
Interviews have been recorded with four parents to contribute to training materials for
clinicians. One of these has been recorded and edited for an audiovisual training
DVD, while the remaining three will be used for an audio CD/DVD. The decision to
adopt this format was taken in consultation with clinical colleagues experienced in
delivering training for the DISCO (Dr Judith Gould and Mrs Carole Murray).
Accompanying the DVD and audio CDs will be background information on each case
and scoring information and further information/advice will be written up into the
manual.
4. Training plan for Children’s ASD Diagnosis Team – Aneurin Bevin Health
Board
An initial consultation was held with Dr Dawn Wimpory (Betsi Cadwaladr University
Health Board) on 25th Feb, and a meeting was held with Mrs McKigney and Dr Alka
Ahuja (ABHB), 5th March, to plan training visits by Cardiff University. These
meetings and on-going consultation with the ABHB team led to the development of
plans for the training of clinicians from the ABHB team. The clinicians are already
experienced in the use of the DISCO and the training plan was focused on the
administration, coding, and interpretation of the Abbreviated DISCO.
The Abbreviated DISCO has been developed from items already within the complete
DISCO by the Wales Autism Research Centre in collaboration with Dr Judith Gould
(The Lorna Wing Centre, NAS) and an international team of researchers. From the
Brief DISCO, it will be possible to run the abbreviated algorithms described above
for ICD-10 Childhood Autism and DSM-5 ASD, in addition to the signposting set and
algorithms for Gillberg’s Asperger Syndrome and Wing and Gould’s ASD. Initially,
Mrs McKigney, Dr Ahuja, and a specialist registrar working with the team will
receive the training, which will complement their current practice. The meetings with
Mrs. McKigney and Dr Ahuja were also central to the development of the WTISSF
grant proposal described above.
Additional diagnostic and assessment materials detailed in the grant application have
been ordered and received, including the kit and coding schedules for the Autism
Diagnostic Observation Schedule, materials for the Autism Diagnostic Interview, and
the Mullen’s Scales of Early Learning.
Signed:
31/5/2013
Professor Susan Leekam
Chair in Autism
School of Psychology, Cardiff University
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