NJR Patient
Reported
Outcome
Measures
(PROMs)

All NHS patients who are have a hip or knee replacements are invited to fill in a Patient Reported Outcome Measures (PROMs) questionnaire, as part of NHS England’s PROMs programme. This programme forms part of the NHS strategy to measure and improve the quality of care.

The PROMs questionnaire asks patients about their health and the quality of life before they have an operation, and about their health and the effectiveness of the operation on their mobility afterwards, at six months.

Extending national PROMs

The NJR collects ‘clinical outcomes’ data on primary joint replacement and linked revision activity for the shoulder, elbow, hip, knee, and ankle joints. Combining ‘patient outcomes’ with the ‘clinical outcomes’ data from the registry gives a more comprehensive picture of the overall outcome of operations.Through this data linkage, we also report mortality and revision outcomes, as well as Patient Reported Outcome Measures (PROMs), for hip and knee replacements.

NHS England’s national PROMs programme records PROMs pre-operatively before surgery, and post-operatively at approximately six months after the procedure. This data provides an overview of patient pain and functioning before surgery, as well as 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, PROMs can be used by patients to understand the pain and function health benefits 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.

On a smaller scale, the NJR in conjunction with the British Elbow and Shoulder Society (BESS) also operates a PROMs programme for shoulder surgery.

PROMs and the NJR Strategic Plan

The NJR previously held a ‘Strategic Planning Workshop’ with key NJR stakeholders, with the purpose of reviewing the goals and activities of the NJR and setting high level strategic priorities for future years, which in turn would inform our 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:

• 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 revision surgery and mortality rates.

With this backdrop, a working group was established under the direction of the NJR Research Committee, to explore our options in this domain. We have consulted with other joint registries on the approaches taken in their territories to understand the options available, and also about the types of patient-reported outcome measures that are collected.

The NJR Executive Committee agreed to a work programme expanding the NJR consent model further to routinely and systematically collect email contact information and formally request linkage for the purposes of future 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 membership:

Professor Mark Wilkinson	Chair and NJR Board public health and epidemiology representative
Tim Wilton	Medical Director, NJR
Professor Mike Reed	Chair of NJR Surgical Performance Committee
Robin Brittain	Patient representative, NJR Board
Rebecca Beesley	Patient representative, NJR Board
Chris Boulton	Director of Operations, NJR
Deirdra Taylor	Associate Director of Communication and Stakeholder Engagement, NJR
Alyson Ottley	Research and Governance Programme Manager, NJR
Professor Andrew Price	University of Oxford representative
Professor Andy Judge	University of Bristol representative
Richard Armstrong	NJR Lot 1 Contract (NJR data management, data solutions and associated services) representative