Incorporating parent, former patient and clinician perspectives in the design of a national UK double-cluster, randomised controlled trial addressing uncertainties in preterm nutrition.
William Bishop LammonsBecky MossCheryl BattersbyVictoria CorneliusDaphne BabalisNeena ModiPublished in: BMJ paediatrics open (2021)
The early involvement of parents and former patients identified the centrality of parents' emotional needs in the design of comparative effectiveness research. These insights have been incorporated into trial enrolment processes and information provided to participants. Specific outputs were a two-sided leaflet providing very brief as well as more detailed information, and use of language that parents perceive as inclusive and participatory. Further work is warranted to support clinicians to address personal biases that inhibit trial participation.
Keyphrases
- study protocol
- end stage renal disease
- clinical trial
- physical activity
- phase iii
- ejection fraction
- newly diagnosed
- phase ii
- chronic kidney disease
- randomized controlled trial
- mitral valve
- palliative care
- aortic valve
- health information
- preterm birth
- cross sectional
- healthcare
- health insurance
- left ventricular
- social media