Bev Curtis, Speech and Language Therapist
Cardiff and Vale University Health Board
This Bevan Fellow project developed and evaluated a new outcome measure of paediatric dysphagia, i.e. eating/drinking/swallowing difficulties in children.
Medical advances enable an increasing population of children to survive. These children often present with complex, continuing healthcare needs including dysphagia. Speech and Language Therapists (SLTs) are key professionals in the assessment and management of dysphagia.
Previously, no outcome measure of paediatric dysphagia existed. This presented challenges in measuring the effectiveness of interventions, evidencing bids for staffing, effective benchmarking and measuring improvements in care for this vulnerable population.
The prevalence and severity of paediatric dysphagia and its management in Wales is unknown, because of the lack of data. This measure will allow for the collection of powerful, national datasets which will facilitate enhanced audit and quality assurance, in turn reducing health inequality and driving up standards.
To develop appropriate quality measures of paediatric dysphagia which are defined, specific and sensitive; allowing for comparison over time and between different locations.
Collection of outcomes data is rarely prioritised by clinicians. Engagement of a local team in the tool’s development promoted shared ownership and commitment to the project.
The new tool needed to be compatible with the tool endorsed by the Royal College of SLT (RCSLT) in 2015, the Therapy Outcome Measure (TOM), to ensure that data generated could contribute to large data set collection and analysis. This required close involvement of the TOM’s author.
An MSc project supported the early development of an outcome measure. This Bevan project supported further research and validation.
Validity and reliability studies have demonstrated that the tool can capture impact effectively and consistently.
PaedD-TOM is considered easy to apply and valuable for guiding intervention.
PaedD-TOM has now been published and is available for use by SLTs working in paediatric dysphagia
The Parent/Carer Confidence and Understanding scale of PaedD-TOM, also published, is available for all health, social care and education professionals who seek an outcome measure reflecting the views of parents.
Use of data collected so far has generated fascinating insights, already guiding improvements in patient care. With more data across more sites, advancements can be expected, associated with better, more equitable care in Wales for our most vulnerable children and their families.
What can PaedD-TOM do?
Demonstrate impact and contribution of SLT to changes in individual’s real life functioning.
Support research and development of innovative practice and the evidence base.
Support service evaluation (including internal and external benchmarking).
Support business case development.
Enable improvement initiatives to be measured effectively.
The next version of the RCSLT Online Outcomes tool will include PaedD-TOM scales, supporting future large data set collection.
Implementation is the next, vital step. Outcome measurement now needs to become embedded in routine clinical practice in Wales by paediatric dysphagia SLTs.
To achieve this, PaedD-TOM needs to be integrated into electronic health records in Wales.
Online and/or social media sources are needed, to provide information and support.
"Using “PaedD-TOM enables me to objectively gauge my impact on my patients across a range of domains." "It helps guide my decision-making and plan for family-centred care." "PaedD-TOM demonstrates how quality clinical practice can make a difference to the patients and families we care for." Feedback from users”
Part of cohort Bevan Exemplar Projects 2018-19