PROs in routine care: health, social and integrated care settings

In collaboration with the National Institute for Health and Care Research Applied Research Collaborative West Midlands (NIHR ARC WM) CPROR is leading a programme of research exploring the use and implementation of Patient Reported Outcomes (PROs) in integrated care. Healthcare professionals (HCPs) can enhance patient-centered care by conducting personalized clinical assessments including PROs, aimed at supporting the monitoring of diseases and treatments, thereby fostering improved communication between patients and clinicians and facilitating collaborative decision-making.

At the organizational level, Patient-Reported Outcomes (PROs) are utilized to evaluate provider performance, shape policies, and drive initiatives for enhancing quality. Similarly, in social care settings, PROs can be leveraged to empower individuals, promoting their autonomy and enabling care that aligns with their health and well-being objectives. At the operational level, these self-administered surveys can pinpoint unmet needs, ensuring that quality metrics prioritize outcomes centered on the individual. PROs present an opportunity to facilitate the delivery of integrated care, particularly in contexts where individuals, especially those managing multiple chronic conditions, access both healthcare and social support services.

Following a scoping review to understand the scope of PROs use in social and integrated care settings, we are undertaking mixed methods research to identify key factors to inform guidance on key considerations to optimise PROs use in integrated care. Working alongside the ARC WM Patient advisory group, this research involves persons with lived experience, carers and professionals across health, social care and voluntary organisations.

Led by Dr Christel McMullan, this study aims to test the usability and the feasibility of using ChemoPRO® in a oncology setting. ChemoPRO® is an app linked to ChemoCare®, an electronic chemotherapy prescribing and patient management system. The electronic platform was designed by CIS Oncology.It consists of 2 stages:

1. Usability study of the ChemoPRO® app
2. Feasibility study of the ChemoPRO® app in a clinical setting (ongoing).

Related links:

• Embedding patient-reported outcomes at the heart of artificial intelligence health-care technologies

PROM-HD - Patients with Chronic Kidney Disease (CKD), particularly those with end-stage kidney disease (ESKD) undertaking haemodialysis (HD), often experience a high symptom burden and diminished health-related quality of life. Data on these constructs can be collected directly from patients and measured using electronic patient-reported outcomes (ePROs). Led by Dr Nicola Anderson as part of an NIHR Clinical Doctoral Fellowship, Dr Anderson's PhD thesis thesis explored and informed the evidence on how ePROs might be used to promote quality of care and safety in the management of patients with end-stage kidney disease requiring treatment with HD.

PRO-TRACK - The ‘Using Patient-Reported Outcome measures (PROMs) to promote quality of care and safety in the management of patients with Advanced Chronic Kidney Disease’ (PRO-trACK) project was undertaken by Dr Aiyegbusi for his PhD work. PRO-trACK explored the validity of PRO measures avaliable for use in patients with advanced CKD, the views of patients on the use of ePROs in their management and the usability of a prototype of an ePROM system at UHB.

Related links:

PROM HD:

• Using patient-reported outcome measures (PROMs) to promote quality of care in the management of patients with established kidney disease requiring treatment with haemodialysis in the UK (PROM-HD): a qualitative study protocol | BMJ Open
• Using patient-reported outcome measures during the management of patients with end-stage kidney disease requiring treatment with haemodialysis (PROM-HD): a qualitative study 

PRO-TRACK:

• Using Patient-Reported Outcome Measures (PROMs) to promote quality of care and safety in the management of patients with Advanced Chronic Kidney disease (PRO-trACK project): a mixed methods project protocol

Major trauma is a leading cause of death and trauma mortality is predicted to increase over the next 20 years. However, improvement in survival has been demonstrated in the UK. The consequence of increased survival rates is that more people are living with long-term often life changing disabilities and reduced quality of life. Therefore, the rising number of major trauma survivors has created the need for a change in the approach to clinical practice and rehabilitation for this population.
In order to understand how peoples’ quality of life is affected following a traumatic injury and the effects of that injury on their health and wellbeing, it is important to capture patients’ perspectives of their own health.

This research, led by Dr Christel McMullan, used a mixed-methods approach to inform the development of an electronic PRO system inthe context of Traumatic Brain Injury. It consisted of 3 stages:

1. Qualitative study to establish the impact of TBI on quality of life/ symptoms and explore views on using PROMs to support clinical care and research
2. Usability study of the electronic PRO system designed from qualitative study findings
3. Feasibility study of the electronic PRO system in a clinical setting.

Related links:

• Introduction to PROMs in Trauma

• Qualitative study

UNTANGLE is a 24-month prospective observational pilot study recruiting three patient groups: civilians with acute moderate-severe TBI, military veterans with diagnosis of a previous TBI and a control group of civilians or veterans with no history of previous moderate or severe TBI. This study aims to evaluate the relationship between evolving visual, biochemical, and mental health changes in both military veterans and civilians, suffering from TBI, and detect preliminary indicators of prognosis for TBI recovery, and quality-of-life outcomes.