Patient Reported Outcome Measures: Their Role in Measuring and Improving Patient Experience

Patient Reported Outcome Measures: Their Role in Measuring and Improving Patient Experience In the past, productivity of NHS services was measured largely by inputs, such as the numbers of procedures carried out, numbers of consultations and admissions, with little thought for how much benefit patients were deriving from these interventions. A review of public service performance and productivity by the Office of National Statistics, called for better measures of outcome to inform decisions about the productivity of public services.[1] Policy and legislation increasingly emphasises the role of patients and service users direct judgement about the services they receive in influencing future policy. Furthermore, the forthcoming Commissioning Framework 2012, which will reflect the three main Outcomes Frameworks (NHS, Public Health and Adult and Social Care) and prioritise indicators, reflecting patient reports of outcomes and experience as well as traditional morbidity and mortality. Measuring patients experience of health services and care has become an essential part of health policy, regulation and service improvement.[2] The NHS Outcomes Framework 2011/2012[3]stresses the role of a positive patient experience, the need to measure care as perceived by patients, and the need for the healthcare system to respond and act on such feedback (Domain 4). Furthermore, improving the quality of life of people with a long-term condition is featured (Domain 2). Since April 2010, trusts have been required to produce an annual Quality Account incorporating three principles of safety, effectiveness and patient experience.[4] Quality and outcome measurement now underpins the NHS philosophy with patient outcomes and experiences of care forming a key component. The 2012/2013 NHS Operating Framework also demands more frequent patient surveys and engagement with patients to enable quality improvement. This is further endorsed and supported by the evolution of NICE Quality Standards, which will define quality criteria for specific care pathways and conditions. In World Class Commissioning, the Department of Health sets out competencies required of commissioners. Competency 3 requires PCTs to gather feedback from patients and the public and use information on patient outcomes and experience to make commissioning decisions and monitor the quality of services they commission. Correspondingly, the NHS Operating Framework, CQUIN schemes and Quality accounts all set out frameworks for using patient feedback to inform commissioning decisions and manage contracts.[5] Patient Reported Outcome Measures (PROMs) are principally questionnaires, which measure different aspects of health and quality of life from the patient s perspective. Lord Darzi s Interim Report on the future of the NHS recommended that PROMs should have a greater role in the NHS. The Standard NHS Page 1/10

IV Psychological Psychological illn Coping, positive w V Social well-bein Family and intima Social contact, int Leisure activities Sexual activity an VI Cognitive func Cognition, alertne Memory, confusio VII Role activities Employment Household manag Financial concern Patient Reported Outcome Measures: Their Role in Measuring and Improving Patient Experience Contract for Acute Services, introduced in April 2008, includes a requirement to report from April 2009 on Patient Reported Outcome Measures (PROMs) for patients undergoing primary unilateral hip or knee replacements, groin hernia surgery or varicose vein operations. Furthermore, Lord Darzi s report High Quality Care for All [6](2008) outlines policy regarding payments to hospitals based on quality measures as well as volume. These measures include PROMs as a reflection of patients experiences and views. Following a successful pilot evaluation of the feasibility of collecting PROMs in elective procedures (Smith et al., 2007) since April 2009, the collection of PROMs for the selected elective procedures has been implemented. Response rates generally are reaching required standards of above 70%. PROMs usually take the form of short questionnaires, reflecting the broad nature of health status, disease, or injury, which are most often summed to give a total score. Fitzpatrick et al.[7]outlines the most common dimensions of health assessed in PROMs (Table 5). There are three broad categories: generic health status, preference-based, and condition or population-specific measures. Generic instruments comprise items relevant to the widest range of patient conditions and the general population. Preference-based measures are also broad in content but additionally provide utilities or values regarding health (for use in, for example, cost-utility analyses of interventions). Specific instruments are often more focused on a particular disease or health condition (for example, diabetes), a patient population (for example, older people), a specific problem or symptom (for example, pain), or a described function (for example, activities of daily living). Table 5: Domains of health most commonly assessed in patient-reported outcome measures I Physical Functio Mobility, dexterity Activities of daily II Symptoms Pain, nausea, appe Energy, vitality, fa Sleep and rest III Global judgem Page 2/10

VIII Personal con Satisfaction with b Stigma and stigma Life satisfaction, s IX Satisfaction wi Patient Reported Outcome Measures: Their Role in Measuring and Improving Patient Experience Examples of PROMs The European Quality of Life instrument (EQ-5D) contains a core set of generic health status items[8](the EuroQol Group, 1990) and is currently the instrument used across all procedures in the current DH PROM programme. There are two sections: the EQ-5D and the EQ thermometer. The EQ-5D assesses health across five domains: anxiety/depression (AD), mobility (M), pain/discomfort (PD), self-care (SC) and usual activities (UA). Each domain has one item and a three-point categorical response scale; health today is assessed. A five-point response scale has been developed and will be adopted in the DH PROMs programme and future pilots. Weights based upon societal valuations of health states are used to calculate an index score. The EQ thermometer is a single, visual analogue scale with a range of 0 to 100, where 0 is the worst and 100 the best imaginable health. Condition-specific PROMs range from a short list of items focusing on one or two dimensions of health to multidimensional comprehensive questionnaires with several items within domains. An example is the Oxford Hip Score, which has 12 items concerning pain and functioning and is used in the current DH PROMs programme to evaluate hip surgery. The Oxford Knee Score is similar with 12 items assessing pain and functioning and is the current instrument in the PROMs knee replacement programme. The advantages of these questionnaires are the simplicity and subsequent ease of completion and synthesis. They can be used in combination with a generic measure such as the EQ-5D to capture different aspects of health. There are many multidimensional PROMs for specific conditions, which generally contain several items within domains and result in increased burden for patients for completion and also scoring and data analysis. An example is the Stroke Impact Scale, which has 59 items across 8 domains. It comprehensively and effectively captures the many ways that a stroke can affect a patient s life, but its length may affect participation and completion rates. Consensus is often lacking as to which PROM to use. Structured reviews of measurement properties are a prerequisite for instrument selection and standardisation, and instruments with measurement properties that support their application in specific populations and across a range of evaluation settings need to be identified. Several reports of PROMs for specific health conditions can be downloaded (http://phi.uhce.ox.ac.uk). An evidence-based approach strengthens recommendations from these reviews. How to choose a PROM Selection criteria have been defined for assessing the quality of patient - reported health instruments.[9][10][11] These include measurement issues, such as reliability, validity, Page 3/10

responsiveness, and precision, as well as practical operational characteristics, such as acceptability and feasibility. Table 2 outlines the principal measurement and operational properties of PROMs. Although instruments should meet specific statistical requirements, and each evaluation adds to the body of evidence for a given questionnaire, the most important feature of a PROM is its acceptability to patients. Although difficult to evaluate directly, this is most readily assessed through response rates, completion rates and missing values. If items within an instrument are consistently omitted, or patients have difficulty providing an answer, it is likely that the instrument does not meet patients needs. The font style and size used in questionnaires may also influence completion. Ideally, patients should be interviewed for their views on ease of completion, content, and format during the pre-testing stage of instrument development.[12] The ability of patients to complete an instrument is also affected by how it is administered. Although it can be cheaper than interview or telephone administration, postal administration often results in higher levels of missing values.[13] As the availability and use of the Internet grows, surveys via the web or social media are becoming an attractive method because of their relatively low cost and high response rates, but issues of patient confidentiality, reliability and ethics will need to be addressed. Evidence also suggests that respondents are more willing to report less favourable health states when completing an instrument themselves than when the instrument is administered by interview. [14] Response rates may be influenced by specific content, for example, relating to physical or emotional issues; or by an item s relevance and appropriateness to its target population[15] and by response formats, for example, visual analogue scales or Likert scaling. The length of time needed for completion is an important consideration for both respondent and clinician or researcher. The feasibility of instrument administration refers to the time and cost of administration, scoring, and interpretation for clinicians, researchers, and other staff. This is of great interest now in light of the Government s PROM programme. Current applications NHS PROM data is currently being analysed by external sources and data is presented unadjusted and case-mix adjusted. Data is publicly available and can be viewed at Primary Care Trust and Strategic Health Authority level both adjusted and unadjusted pre and post-procedure scores and health gain. It is now possible to identify best performing trusts in each elective procedure in terms of health gain as well as practical indicators such as participation and response rates. A toolkit has also been published (Patient Reported Outcome Measures Tool) to assist commissioners in their health investment decisions.[16] There are several pilot applications of PROMs being conducted currently in the NHS. Using PROMs in primary care for people with long-term conditions is being evaluated in North West England and some PCTs in London. The feasibility of both cross sectional and longitudinal data collection is being evaluated with patients with asthma, COPD, diabetes, Page 4/10

epilepsy, heart failure and stroke. The feasibility of extending the current elective surgical procedure PROM programme is being tested with several Trusts in England with patients receiving elective cardiac revascularisation procedures. This replicates the current approach with pre and post-procedural PROM completion. Another area being considered for roll out of PROM data collection is within secondary community mental health trusts and with patients with depression. This pilot will evaluate the feasibility and usefulness of collecting PROMs during psychological therapies. One additional feature of this pilot is to evaluate the use of PROMs in clinical practice to inform decision making. The main indicators of success for these pilots will be participation and response rates, completion of data and patient and professionals perceptions of benefit. As well as statistical evaluation, patients and stakeholders views will be explored. Linking patient reported outcomes and patient experience Attention is now being given to ways of bringing patients views about their care (their experiences) into closer alignment with their views about the outcomes of their care (patient reported outcomes). Both of these aspects are equally valuable and informative, and the NHS therefore needs to capture both together rather than in separate silos of measurement, feedback and service improvement. The Department of Health has therefore commissioned the development of an Outcomes and Experience Questionnaire to enable patients to report in a short questionnaire on how they feel about the quality of care received as well as the benefits and outcomes of that care. The Transparency in Outcomes a framework for the NHS (2010a) report discussed the need for two main outcome indicators for in-patient services. Central to this is the idea of producing an overall measure score for the responsiveness to the personal needs of patients with items relating to: Patient involvement in decisions about their care (involvement). Being able to talk to hospital staff about their worries and fears (relationship with health professionals). Having enough privacy (respect and dignity). Being given information about medication side effects (communication & Information). Being informed who to contact if worried about after leaving hospital (support). The document also highlights the need for a self-reported measure to capture patients perceived benefits of care they received. Transparency in Outcomes in many ways accepts Page 5/10

this gap by referring, in Domain 4, to the need in the long term for an outcome indicator: CQUINs specific priorities for 2011/12 include indicators related to responsiveness to personal needs of patients. This replicates the 2010/2011 priorities and strengthens the government s commitment to ensuring patients have a good experience of services. Commissioners and providers are encouraged to use locally defined indicators as well as national priorities. Currently, patient experience surveys consist of several core domains, such as access and availability, environment (cleanliness) and continuity of care, which are not directly relevant to person-centred care. There are also no direct questions in regards to the patients views on the benefits of their hospital stay; as this may be more focused on patients needs. Currently approaches to measuring patients reports of outcomes (PROMs) are developed in isolation of work to assess their reports of experiences of care (PREMs) but there needs to be closer alignment with PROMs and PREMs. Moreover, patient reported outcome measurement clearly adopts a pathway or condition specific approach. This may be highly specific and relevant to some conditions and clinical pathways but is not sustainable across all NHS services. There is also an artificial boundary in relation to how patients view health services, particularly if the focus is on core clinical aspects of the patient s experience. Patients have distinct but related views about the outcomes of services in relation to problems they present and about the way their problems were managed by services. Arguably the artificial separation has resulted in evidence from surveys about patient experience being seen as less central to health professionals concerns and the province of provider management. Combining PROMs and PREMs in a single measure A short general-purpose questionnaire, the Outcomes and Experience Questionnaire (OEQ) has been commissioned by the Department of Health with a view to integrating patients perceptions into a short single measure. It directly invites patients to judge and report the outcomes of services used, for example during a specific recent in-patient hospital stay. It focuses on the perceived value, relevance and benefits to the patient of the episode of care. It also includes items that focus on the experience of care, particularly in terms of core clinical and therapeutic experiences in relation to the same hospital stay. Items focused on the perceived value and outcome of services are combined with a similarly small number of items, assessing other aspects of the experience of services, particularly pertaining to responsiveness as discussed in the Transparency in Outcomes discussion document section 3.46. A particular strength of this combined measure is that it combines measures on two complementary aspects of patients reports, of outcomes (PROMs), and of experience of services (PREMS). The rationale for such items is the evidence for validity of summary items of health, of transition items (ratings of health now compared to a previous identified occasion) and global judgements of treatment originally emerging in the patient satisfaction / experience literature. The validation programme for the Oxford scores extensively used such items to assess responsiveness of PROMs (1998: Fitzpatrick et al., 2004). Page 6/10

The two sets of items together comprise a short questionnaire to which the EQ-5D is added. It has been consistently recommended, from evidence assessed by the Oxford PROMs review programme, as the most appropriate short, generic health status measure to complement more specific instruments. It was also identified by other independent reviews as the optimal generic measure to complement the condition specific measures (for example the Oxford scores) in the PROMs for elective surgery.[17] The overall instrument, the OEQ, is intended as an instrument with acceptable length and content to address the need for a patient-reported outcome measure across setting (initially focused on hospital care). Although it does not obtain real-time measurement, it can be administered near or soon after discharge from services. It consists of two sets of five items. The first five capture patients judgements of the benefits of their care, the second five concern the relational aspects how the patient felt about the care they received. The OEQ has undergone several consultations with patients who have had a recent hospital stay, experts in the field and Department of Health Patient Experience Policy leads. The questionnaire is currently undergoing statistical evaluation with a sample of patients in the PROM elective procedure programme, and a sample of patients selected from trusts participating in the NHS annual in patient survey. It is expected that the OEQ will be used in the NHS from April 2012. There are considerable advantages of instruments such as the OEQ. It is short and simple for both users and those responsible for decision making in the NHS in terms of processing and synthesis. In addition to its brevity, it brings together the full range of concerns to patients in relation to outcomes of services and experiences of care in the NHS. Such instruments can be readily completed and complement more detailed assessment with patient surveys or PROMs as well as supplement more innovative methods of capturing near real-time patient feedback. There clearly is a need to focus on how measures like the OEQ are used to promote and inform service improvement locally. Such an approach is engaging, and easy to process. PROMs and commissioning of services Many toolkits are emerging to assist commissioners in making decisions about health investment. The Patient Reported Outcome Measurement Tool (PROMT) has been developed specifically for commissioners in relation to the NHS national PROMs data for elective procedures. It is an interactive spreadsheet and enables commissioners and analysts to benchmark and compare their PROM data to other PCTs. The data can be analysed and presented in bespoke ways according to the commissioner s requirements. It is possible to identify not only outliers but also other possible confounders not currently included in the risk adjustment methodology in order to examine possible reasons for poor performance. The tool could enable greater dialogue between providers and commissioners, and enable jointly developed quality and service improvement initiatives. The PROM movement intends to extend to a wider range of conditions and interventions. Currently they are best understood longitudinally to capture before and after interventions rather than a cross sectional view. The National Outcomes Framework highlights the EQ-5D Page 7/10

as a national measure of health status. Commissioners need to consider the implications of the Outcomes Framework that intend to use this and condition-specific PROMs for monitoring the quality of services for long-term conditions. References Atkinson T. Atkinson Review: Final Report Measurement of Government Output and Productivity for the National Accounts. TSO, London 2005. Bowling A. (1998) Measuring Health. Open University Press, Buckingham. Chow A, Mayer EK, Darzi AW, Athanasiou T. (2009). Patient-reported outcome measures: the importance of patient satisfaction in surgery. Surgery;146:435-443. Darzi A. (2008). High Quality Care for all: NHS Next Stage Review Final Report. London, Department of Health. Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ. (2010). The Routine Use of Patient Reported Outcome Measures in Healthcare Settings, British Medical Journal;340:c186. Department of Health (2007). World Class Commissioning: Competencies, London Department of Health (2009). Understanding What Matters: A Guide to using Patient Feedback to Transform Services. Department of Health (2010a). Transparency in Outcomes a Framework for the NHS. London: Department of Health. Department of Health (2010b). Equity and Excellence: Liberating the NHS. London: Department of Health. Department of Health (2011). The Operating Framework for the NHS in England 2012/13. EuroQol Group T. (1990). EuroQol: a new facility for the measurement of health-related quality of life. The EuroQol Group. Health Policy. FDA (2009) Food and Drug Administration s -Guidance for Industry. Patient-Reported Outcome Measures: Use in Medical Product Development to SupporLabeling Claims. U.S. Department of Health and Human Services. Food and Drug Administration. Fitzpatrick R, Davey C, Buxton MJ, Jones DR. (1998). Evaluating patient-based outcome measures for use in clinical trials, Health Technology Assessment; 2(14). Fitzpatrick R, Norquist JM, Jenkinson C et al. (2004). A Comparison of Rasch with Likert Page 8/10

Scoring to Discriminate between Patients Evaluations of Total Hip Replacement Surgery. Quality of Life Research;13:331-338. Lai S, Perera S, Duncan W, Bode R. (2003) Physical and Social Functioning after Stroke: Comparison of the Stroke Impact Scale and the SF-36. Stroke; 34: 448-493. McDowell I, Newell C. (2010) Measuring Health: a Guide to Rating Scales and Questionnaires. Oxford University Press, New York. McHorney CA. (1996) Measuring and Monitoring General Health Status in Elderly Persons: Practical and Methodological Issues in Using the SF-36 Health Survey. Gerontologist; 36: 571-583. Murray, D. W., Fitzpatrick, R., Rogers, K., Pandit, H., Beard, D. J., Carr, A. J., and Dawson, J. The use of the Oxford Hip and Knee Scores. J Bone Joint Surg. Br. September 2007. Nunnally JC, Bernstein IH. (1994) Psychometric Theory. McGraw-Hill Series in Psychology, McGraw-Hill, Inc. Third Edition. Smeeth L, Fletcher AE, Stirling S, Nunes M, Breeze E, Ng E, Bulpitt CJ, Jones D. (2001) Randomised Comparison of Three Methods of Administering a Screening Questionnaire to Elderly People: Findings from the MRC Trial of the Assessment and Management of Older People in the Community, British Medical Journal; 323: 1403-1407. Smith S, Cano S, Lamping D, Staniszewska S, Browne J, Lewsey J et al. (2004). Patient-Reported Outcome Measures (PROMs) for Routine Use in Treatment Centres: Recommendations Based on a Review of the Scientific Evidence, London School of Hygiene and Tropical Medicine, Department of Health. Sizmur S, Redding D. (2009). Core domains for Measuring Inpatients Experience of Care. Oxford, Picker Institute Europe. Streiner DL, Norman GR. (1995) Health Measurement Scales. A Practical Guide to their Development and Use. Oxford Medical Publications, Inc. Second Edition. Page 9/10

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