Approximately 700 children are born each year in the UK with a
cleft palate. 20% of these children are either barely intelligible
or entirely unintelligible at age 5 and are described as having
persistent speech disorder. Persistent speech disorder is
associated with poor outcomes in education, employment and mental
health. A review of studies of speech and language therapy
interventions for children born with cleft palate found that there
was not enough evidence to say which type or pattern of delivery of
intervention is most effective for these children in reducing the
number who have persistent speech disorder at age 5. A national
study, the Cleft Collective Speech and Language Study, has been set
up to investigate speech development from birth to age 5 in
children born with cleft palate and to provide a comprehensive
dataset which can be used by future researchers. With additional
funding, it would also be possible to collect data on the types of
speech and language therapy intervention children receive within
the national cohort study. This would enable us to determine which
types of speech and language therapy intervention are associated
with good speech outcomes in these children, leading to fewer
children who are barely intelligible or entirely unintelligible at
age 5. A series of focus groups with speech and language therapists
(SLTs) have been undertaken to determine the content for a survey
of speech and language therapy (SLT) intervention for children who
are participating in the cohort study. The aims of this project
were: - To identify which interventions are being delivered for
children born with cleft palate across the UK and discover how they
are being delivered. - To develop an electronic survey for data
collection in the CC-SL Study, to obtain information on the types
of speech and language therapy interventions and patterns of
service delivery received by participants. Focus groups with Cleft
Specialist SLT teams, with participation from community SLTs, were
completed. During the focus groups, a number of domains of SLT
intervention and patterns of service delivery were explored
including: age of child at intervention; frequency of sessions;
duration of individual sessions/episode of care; content of
intervention; location and agent of delivery. During these focus
groups, definitions and terminology were clarified. When saturation
occurred, the researchers conducted knowledge elicitation
activities during the focus groups to build on outputs from earlier
focus groups. Nvivo 10 software was used for data organisation and
analysis. Iterative content analysis identified codes and resultant
questions for use in the survey. A pilot survey was drafted using
REDCap software. SLTs working with children born with cleft palate
piloted the survey and provided feedback related to the layout,
clarity and time taken to complete the survey. Survey questions and
response options were amended based on the pilot findings and a
final version was agreed. A protocol for use of the survey within
the CC-SL Study has been written and an amendment to the study's
ethics has been accepted. Once the survey is live across the CC-SL
Study, data on SLT interventions for children within the cohort
will be collected. A subsequent funding application will be made to
analyse the data collected for the purpose of identifying the
impact of SLT interventions on speech outcomes in children born
with cleft palate. This study will involve an epidemiological
analysis of the speech outcome data collected within the cohort
study to identify associations between outcomes for speech and
interventions received. Analyses will include adjustment for
severity of speech disorder (using baseline measures of speech at
age 13 months) and for known confounders such as socio-economic
status, type and timing of surgery and developmental level of the
child and parental engagement with speech and language therapy
intervention.
Main findings
- The project has identified a wide number of speech and language
therapy interventions which are being delivered to children born
with cleft palate across the UK.
- Similarities and differences were reported nationally with
regards to how services deliver intervention and what influences
the Speech and Language Therapist's decision making when planning
this intervention.
- Many intervention approaches that are used frequently were
found to have weak evidence for how well they work. This is an
issue to be addressed in future research.
Impact
Findings have provided information about what interventions are
being delivered to children born with cleft palate across the UK
and how this is provided. This information has been used to develop
a survey for the Cleft Collective Speech and Language Study. This
survey will be completed by Speech and Language Therapists to
provide intervention data, which will be used to answer research
questions in the future. Research questions will aim to discover
the most effective interventions for children born with a cleft
palate. If these are used by Speech and Language Therapists we
would hope to see improved outcomes for this group of children.
Other project outcomes
The key outcome from this work is the development of a survey
which will collect data on SLT interventions received by children
in the Cleft Collective Speech and Language Cohort Study. This
information will expand the dataset, which is available for any
research to apply to access. It will also be used by the applicant
team from this award to determine the impact of existing
interventions and patterns of service delivery on outcomes for
children in the cohort study. Findings from this work will provide
information on the specification of an intervention to be used in a
future trial. Plans for a funding application to use the data are
on hold while we establish the process for collecting the data and
until we have sufficient data to make analysis worthwhile. To date,
over 350 children have been recruited to the study but they are
recruited at birth and the survey of SLT intervention takes place
when they are five years old. A handful of children in the study
have reached five years, but we need to wait for more before we
will have sufficient data to use. Alongside succeeding in the core
deliverable of developing and implementing a survey of SLT
intervention, we have achieved the following outcomes:
- Development of clinical researcher - Caroline Williams, SLT
with the Newcastle upon Tyne Cleft team, was employed to work on
this study. With support from the team at BSLTRU, she has
successfully carried out the bulk of the work outlined in the
proposal and has developed research skills along the way. She is
currently preparing a bid to the NIHR ICA PCAF scheme.
- Maintenance of strong collaborations with regional cleft lip
and palate services across the UK
- The Cleft Collective is a longitudinal cohort study which
collects data from regional specialist clinical services across the
UK. The focus group work has been essential to ensuring that the
voice of SLTs has been considered in the development of the survey
and refinements have been made in response to their feedback. The
funding from this award has been pivotal in enabling this and has
enabled us to provide what the clinical teams requested in terms of
their involvement in the research process.
