NJR Patient
Reported
Outcome
Measures
(PROMs)

Currently, all NHS patients who are having hip or knee replacements are being invited to fill in Patient Reported Outcome Measures (PROMs) questionnaires as part of NHS England’s PROMs programme. The NHS asks patients about their health and quality of life before they have an operation, and about their health and the effectiveness of the operation afterwards at six months.
This programme is part of the NHS measuring and improving the quality of its care.

Extending national PROMs

Combining these ‘patient outcomes’ with the ‘clinical outcomes’ data from the NJR will give a more comprehensive picture of the outcome of operations. The National Joint Registry (NJR) collects data on primary joint replacement and linked revision activity for the shoulder, elbow, hip, knee, and ankle joints. Through data linkage, NJR also report death events and Patient Reported Outcome Measures (PROMS) for hip and knee replacements. NHS England’s national PROMS programme records PROMs pre-operatively between listing of the patient for surgery, and post-operatively at approximately 6 months after the procedure.

This data provides an overview of patient pain and functioning before and at a given point after surgery and a measure of the change in the intervening period in order to calculate the health gains associated with these procedures. Depending upon the specific tool used, the PROM can be used by patients to understand the pain and functional health benefit and by health economists to give a numeric value (QALY – quality-adjusted life-year) to the healthcare economy. Currently, the PROMs measures for joint replacement used by the National PROMs programme are the EuroQol 5D (EQ-5D) 3L index score, EQ Visual analogue scale (EQ VAS), Oxford Hip Score and Oxford Knee Score. At a smaller scale, the NJR in conjunction with the British Elbow and Shoulder Society (BESS) also operates a PROMs programme for shoulder surgery, and a long-term PROMs outcome programme (led by Professor Alex McGregor) in a subset of hip and knee patients.

PROMs and the NJR Strategic Plan

On the 18th January 2018, the NJR held a Strategic Planning Workshop with members and key stakeholders, with the purpose of reviewing the goals and activities of the NJR and setting high level strategic priorities for the next three years, which in turn would inform future NJR Annual Work Plans and determine how NJR resources are utilised.

One of the primary strategic themes arising from this workshop was better understanding and utilisation of patient reported outcomes. The key drivers for PROMs data were perceived as follows:

• Access to PROMS data is important to patients who want to understand what impact joint replacement may have on their pain and function
• Healthcare commissioners want information on the cost/benefits of joint replacement for strategic planning
• Healthcare providers want to monitor the outcomes of their interventions beyond just the hard end points of death and revision surgery

With this backdrop, a working group has been established under the direction of the Research Committee to explore NJR options in this domain. We consulted with other joint registries on the approaches taken in their territories to understand the options available, and also the types of PROMS collected.

The NJR executive committee agreed to a 2019/20 work programme including expanding the NJR consent model further to routinely and systematically collect email contact information and formally request linkage for the purposes of future PREMS/PROMS collection for all patients across the NJR. This approach would also:

• Help our understanding of the demographics and proportion of patients that declare an email account and access to the internet.
• Facilitate linkage with an existing open source software platform has recently been developed in conjunction with NHS Digital.
• Healthcare providers want to monitor the outcomes of their interventions beyond just the hard end points of death and revision surgery.

NJR PROMs Working Group

Professor Mark Wilkinson	Chairman, Public health and epidemiology member, NJRSC
Tim Wilton	NJR Medical Director
Gillian Coward Robin Brittain	NJRSC Patient representative
Elaine Young	Director of Operations, NJR
Chris Boulton	Deputy Director of Operations, NJR
Deirdra Taylor	NJR Associate Director – Communications and Stakeholder Engagement
Alyson Ottley	Research and Governance Programme Manager, NJR
Professor Andrew Price	Consultant orthopaedic surgeon member
Professor Amar Rangan	Consultant orthopaedic surgeon member
Professor Andy Judge	University of Bristol
Richard Armstrong	NJR Lot 1 Contract (NJR data management, data solutions and associated services) representative