Authors
Christel McMullan(1,2,3), Ameeta Retzer(1), Anita Slade(1), Tony Belli(3), Elin Haf Davies(4), Gary McNamara(4), Luke Flavell(5), Jackie Flavell(5), Melanie Calvert(1,3,6,7) Grace Turner(1,2)
(1)CPROR, University of Birmingham, UK; (2)CTSR, University of Birmingham, UK; (3)NIHR Surgical Reconstruction & Microbiological Research Centre, Birmingham, UK; (4)Aparito Ltd; (5)Patient partners; (6)Birmingham Health Partners Centre for Regulatory Science and Innovation, Birmingham, UK; (7)NIHR ARC/NIHR Birmingham BRC, UK
Background
Each year, 1.4 million people attend A&E in England with a traumatic brain injury (TBI) & over 50 million people worldwide have sustained a TBI.
Advances in critical care, imaging and the reorganisation of trauma health systems mean that more people live with the damage caused by the TBI for longer.
Aims
Patient Reported Outcome Measures (PROMs)are questionnaires completed by patients that can be used to monitor the long-term effects of health conditions.
The aim of the PRiORiTy study was to develop and assess the feasibility of an electronic Patient Reported Outcome Measure (ePROM) system for inclusion within routine clinical care & TBI research, which in this instance involved getting people with a TBI to report their symptoms using questionnaires electronically utilising the Aparito Atom5TM platform.
Study
The project is divided into three parts.
The first part was a qualitative study, which aimed to obtain the views of people with a TBI, carers and HCPs of PROMs and ePROMs.
The second part was the usability study. Using the results from the qualitative study and feedback from the PPI group, Aparito deployed Atom5TM to collect ePROM responses via a patient-facing app and a web-based clinician dashboard.
The third part is the feasibility study, which will test the electronic platform in a clinic setting.
Participants’ attitudes towards PROMs & ePROMs
- Participants were enthusiastic about PROMs & ePROMs
- PROMs help to focus consultations on what is important to patients (memory loss, anxiety, lack of concentration)
- ePROMs are flexible, timesaving, facilitate evaluation of symptoms & impact on quality of life
- Key features of ePROMs are conciseness and their use of lay language – they should reflect patients’ cognitive and physical ability.
Advantages of ePROMs
- Less burdensome for patients & clinicians
- Fewer data entry errors
- Easy real-time data/remote monitoring & response
- Ability to send/receive feedback easily
Conclusion
Participants’ positive attitudes & experience towards ePROMs in this study demonstrate the potential to capture PROs electronically in routine clinical practice and TBI research.
It is anticipated that the PRiORiTy study will increase capacity for trauma-specific knowledge and expertise in relation to PROMs, as well as inform system development in other areas of trauma research.