Aim of the Study
Definition of what matters most for parents and surgeons at each stage of a care pathway allows rational development of research questions and is aligned to NIHR strategy. Priorities for service users and providers may differ justifying the need for both Patient Reported Outcome Measures (PROMS) and Patient Reported Experience Measures (PREMS) to fully achieve patient-centred surgical care.
The aim of this pilot study was to gain insight from parents and surgeons about the care pathway using qualitative methods and to assess the value of this approach.Methods
Five parents each for ARM/C and HD (from 2 centres in 2 countries) and 6 surgeons each for ARM/C and HD (from 6 centres in 4 countries) were interviewed. This process enabled the clinical team to gather information about where improvements could be made in the care pathway. Parents' priorities frequently focused on factors affecting their experience: one example of this was receiving progress updates about their child at regular intervals during surgery to alleviate worry. Surgeons’ priority more often focused on factors affecting outcome.
ConclusionQualitative approaches are rarely used in paediatric colorectal surgery and are a valuable method in obtaining the perspective of the service user and provider. This will form the basis of a framework to support decision making about the development and use of PROMS and PREMS and research priority setting.