Measuring patient reported outcomes

Making quality of care the key organising principle of the health service was a key recommendation of Lord Darzi’s report, High Quality Care for All, and central to the Department of Health’s vision is the introduction of Patient Reported Outcome Measures (PROMs). It is predicted that 250,000 patients will be asked to complete questionnaires in the coming year with a view to measuring the success of specific surgical procedures and the quality of care being delivered. However, the launch of this project will inevitably raise a number of questions. What will PROMs mean for healthcare organisations? Will it involve extra work? Who will be targeted? What will patients be asked and how will this information be used to improve the quality of care? New guidance1 published by the Department of Health aims to answer some of these questions and sets out in detail:
• The procedures for which PROMs data should be collected.
• Details of the national PROMs questionnaires.
• Roles and responsibilities of the different organisations involved in the delivery of the PROMs programme.
 • A step-by-step guide to the administration of PROMs questionnaires.

Why PROMs?
The Department of Health knows little of the clinical outcomes of NHS services from the patients’ perspective and the introduction of PROMs aims to fill this gap. The DH believes the initiative will offer a number of benefits. PROMs will help patients and GPs to make choices over treatment (by making the data available through the NHS Choices website, for example) and will also enable clinicians and managers to benchmark their own performance. Furthermore, measurement of patient reported outcomes will also help commissioners to judge the quality of care offered by their providers, as well as assess intervention thresholds and pathways. PROMs will also be used in the new DH Outcomes Framework, agreed in the Comprehensive Spending Review. It is further hoped that the data collected will help support a reduction in inequalities in healthcare provision and aid demand management. PROMs data can be used to establish whether referrals for elective procedures are appropriate by examining variation in baseline PROMs scores across the country and comparing against benchmarks. Another key benefit to collecting the data is to assist with research into “what works”. Efficacy and cost-effectiveness of different technical approaches to care can be evaluated using PROMs in association with other measures that assess what would have happened to patients in the absence of treatment or with alternative treatment Health Minister, Lord Darzi, commented: “While a surgeon may judge a hip replacement successful because the procedure has been performed perfectly on the day, the patient will rightly disagree if they are still in pain and continue to have a poor quality of life six months down the line. “The beauty of PROMs is that it measures the success of operations as reported by patients themselves. This programme is the first of its kind in the world and the information collected will empower patients to choose a hospital that achieves the best results for the operation they need. “It will also strengthen commissioning across the NHS by offering PCTs the evidence they need to buy the best services based on patient experiences. What’s more, routine collection of PROMs will enable clinical teams to benchmark their performance and research the success of different treatment options.” NHS Confederation policy director, Nigel Edwards, pledged his support for PROMs, commenting: “There is massive potential to properly define what successful NHS treatment looks like.” However, he warned that PROMs must be administered in such a way that it “does not impose unnecessary bureaucratic burdens on the NHS”. The King’s Fund chief economist, John Appleby, also commented: “Patients will, at last, have a real measure of quality to help them make properly informed decisions about which hospital/specialist to choose. In addition, PCTs will finally have the sort of information they need to identify the best-performing providers, to place contracts accordingly, or to exert evidence-based pressure on those who are under performing.”2 He added that PROMs could also provide basic evidence to inform the revalidation of clinicians and the performance management of hospitals, but added: “Patients and – particularly – staff will need to be persuaded of the benefits of this information if they are to avoid seeing this as just another bit of bothersome, top-down, ‘beast-feeding’ nonsense irrelevant to their care or jobs. A key lesson for the NHS – which it has not always learned – is that those who provide data need to see the results. Trusts should plan ways of feeding back PROMs results to individual patients and clinicians need to be involved in deciding how they will use the data to improve the quality of care they provide.” So how exactly does the DH intend to deliver PROMs without adding to the administrative burdens of healthcare organisations? How will the questionnaire be administered and who will be responsible?

Delivery
Northgate Public Services will be working with Quality Health in partnership with the health providers in the NHS to ensure that there is minimal administrative burden on hospital staff. The company was awarded the three-year contract to adminster PROMs and aggregate the data, in partnership with Quality Health and CHKS, while Market and Opinion Research International was the preferred bidder for PROMs analysis services. The award of the contract builds upon the work that Northgate currently carries out for the NHS Information Centre on Hospital Episode Statistics (HES), and for Healthcare Quality Improvement Partnership (HQIP), in delivery of the National Joint Registry. From this month, all healthcare providers will be expected to invite patients (aged 16 or over) who are undergoing hip replacements, knee replacements, groin hernia surgery, and varicose vein surgery, to complete a pre-operative PROMs questionnaire. Completion of the questionnaire will, of course, be voluntary for patients. Northgate will then be responsible for collecting the pre-operative data and administering post-operative questionnaires. The DH points out that is important that the questionnaires are completed without assistance, as evidence suggests that interviewer-administered questionnaires are associated with bias. Similarly, the ad hoc translation of the questionnaires by, for example, local translators, relatives, or the NHS Direct translation service, will not be acceptable. Where patients are excluded, because staff consider them to lack capacity, the reasons for their exclusion should be recorded. Hospitals will be expected to batch the questionnaires and store them in a secure location on site, but this is the extent of the administrative requirement once patients have completed the surveys. Patients will be asked by Northgate to complete a second, post-operative PROM at an appropriate time after the intervention, which will be sent by post with a pre-paid envelope. (In the future, a web form will also be available.) The first appropriate point of follow-up will be three months for groin hernia repair and varicose vein surgery, and six months for primary unilateral hip and knee replacements. Patients will be asked for their feedback on a range of criteria – such as the level of pain experienced post-operatively, their mobility, and the level of care that they feel they need following the procedure (from healthcare professionals, as well as family and other carers). As the wording of these questions is crucial, particularly in relation to perceptions of pain scoring, for example, which is fairly subjective, pilot studies have focused on ensuring this is optimised to enable comparisons to be made. The results will be linked to other data routinely collected by the NHS such as readmissions due to infection. Nonresponders will be sent a second follow-up letter and PROM at five weeks after non-receipt of a completed PROM. For PROMs to prove successful, securing the support of patients and the NHS is crucial, as Richard Armstrong, from Northgate Public Services acknowledged: “We recognise that PROMs requires the engagement and support from a wide range of stakeholders – including patients and healthcare professionals in the NHS,” he commented. “It is important, firstly, that patients understand the PROMs programme and are behind it. They require reassurance around the use of the data and why it is being collected. We are experienced at this, as we have operated a number of other programmes such as the National Joint Registry.” In fact, earlier research suggests that patients are happy to participate. The London School of Hygiene and Tropical Medicine (LSHTM) previously piloted PROMs with 2,400 patients at 24 sites which showed excellent participation rates, with 80% of patients completing the pre-op questionnaire, and 80% completing the post-op questionnaire.3 “We have to make it easy for patients, keep the questionnaire short and give them options on how they complete it. There will also be a supporting website and DVD available for people who want further information about PROMs, which will explain why it is important that they complete the questionnaire,” Richard Armstrong explained.