Introduction and aims Congenital upper limb anomalies (CULA) are rare conditions and consequently it is difficult to collate and compare results. In 2018 an internationally agreed ICHOM standardisation framework was finalised. It includes the measurement of function, appearance, psychosocial and burden of treatment outcomes.
The main aim of this study was to analyse the:
appropriateness of the chosen standard set
burden and accuracy of data collection
patient/family and clinician feedback
Multi–centre implementation study across four UK paediatric centres.
An electronic patient registry was created in collaboration with the British Society for Surgery of the Hand (BSSH) and Amplitude. This provided the backbone for data entry and storage. Each patient/parent could log into a portal to provide PROMs data, with the clinician logging into an administrative pane to provide validated healthcare data.
Data was collected at pre–defined points across the paediatric timeline by clinicians and patients, aided by automatic reminders.
Results Multiple issues were found in relation to:
the practical framework design (software bugs)
implementation (information governance, costs, the training and rotation of staff, clinic space)
evaluation of the set (co–ordinating cross hospital meetings)
Participation statistics, amalgamation of cross site data and patient/staff feedback on the pilot study is awaited (available July 2019).
Collecting standardised patient data internationally should help facilitate easier collaboration and better understanding of patient outcomes.
The implementation of a standard set does have particular logistical considerations however, as highlighted. We plan to use the RE–AIM framework to inform process improvement once all study data is collected.
In the future we are looking towards analysing ‘Phase 3’ of the implementation of the standard set – a holistic re–evaluation at 5 years and dissemination of results to help drive improvement in clinical outcomes.
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