Outcomes that Matter to Patients

Transcription

1 Outcomes that Matter to Patients Patient Reported Outcome Measures (PROMs) : Progress and What Next? Rafael Goriwoda Senior Analytical Manager NHS England

2 The national PROMs programme so far

3 The first health system internationally to measure what it produces in terms of health. Appleby and Devlin 2010

4 Successful implementation Participation 255,775 episodes 138,398 complete answers 3/4 patients fill out a PROMs questionnaire before surgery. Of these, 3/4 also respond to the post-operative questionnaire. Overall, more than 50% of patients give full feedback on their outcomes. Non responders Scope of the national data collections Since 2009, all patients undergoing Hip Replacement, Knee Replacement, Varicose Vein and Groin Hernia surgery are asked to participate in PROMs. PROMs are part of the NHS Outcomes Framework, Mandate & Standard contract. In 2013/14, 138,398 patients gave feedback on their health state before and after surgery. 4

5 Most patients report successful procedures. Hip Knee Varicose Vein Groin hernia My problems are much better after surgery. My problems are a little better or much the same. 17 out of 20 patients say their problems were much better following hip replacement 15 out of 20 patients say their problems were much better following knee replacement 17 out of 20 patients say their problems were much better following varicose vein surgery 14 out of 20 patients say their problems were much better following groin hernia repair My problems are worse than before. 1 out of 35 patients say their problems were worse following hip replacement 1 out of 16 patients say their problems were worse following knee replacement 1 out of 40 patients say their problems were worse following varicose vein surgery 1 out of 35 patients say their problems were worse following groin hernia 5

6 Patient-reported outcomes have improved since 2009/10 Change in health gain as measured by EQ-5D Since 12/13 Since 09/ Hip replacement - 0.4% + 6.1% Knee replacement + 1.5% + 9.5% /10 10/11 11/12 12/13 13/14 Varicose vein surgery Groin hernia surgery + 0.3% - 1.1% -0.04% + 3.7% Hip Knee Varicose Vein Groin Hernia There has been less scope for improvement in outcomes for groin hernia and varicose vein patients, as patients typically have already a high pre-operative health score and therefore little room for improvement through surgery. 6

7 More hip and knee patients report excellent results. * On the Oxford Hip/Knee Scores poor results are taken to be below 27 (on a scale from 0 to 48). Excellent results are above 41. No comparable threshold for poor and excellent outcomes exists for groin hernia and varicose vein surgery. Knee outcomes* 60% 50% 40% 30% 20% 10% 0% Excellent results (Knee) Poor Results (Knee) Hip outcomes* 60% 50% 40% 30% 20% 10% 0% Excellent results (Hip) Poor Results (Hip) Over half of hip patients report excellent outcomes following surgery, compared to about 30% of knee patients. Conversely, one in ten hip patients and one in five knee patients report poor results. 7

8 However, there is variation across providers. Number of Hospitals identified as negative outlier (and change from 2012/13) Procedure Measure Confidence Interval Alarm : Trust with patient-reported outcomes worse than average, at 95% significance, including alerts (see below). Alert : Trust with patient-reported outcomes worse than average, at 99.8% significance. Hips Knees 99.8% Alert 95% Alarm OHS 10 ( 0 ) 35 ( 8 ) EQ5D 6 ( 0 ) 25 ( 5 ) overall OKS 12 ( 0 ) 39 ( 5 ) 9 ( 3 ) 24 ( -4 ) EQ5D 6 ( 1 ) 19 ( 0 ) overall 11 ( 3 ) 30 ( -4 ) Groin Hernia OHS 1 ( -2 ) 10 ( 2 ) Varicose Veins AVVS EQ5D overall 4 ( -1 ) 11 ( 0 ) 1 ( 1 ) 4 ( 1 ) 4 ( -1 ) 13 ( 1 ) On the Oxford Hip Score, a total of 35 providers are identified as an alarm. Only 10 providers are considered an alert. For knee replacements, there are 24 alarms of which 9 are alerts. 13 providers have been identified as recurrent outliers, i.e. outliers on more than one condition on the same condition two years in a row on the same condition using both generic and condition-specific questions 8

9 So What? The impact of collecting PROM data

10 Enabling change at local level There is a range of national uses of the data: Best Practice Tariff Care Quality Commission Intelligent Monitoring Beyond Compliance However, local use of the data needed to make improvements. Examples from case studies collated by the HSCIC: Revised pain management regimes leading to earlier mobilisation, improved rehab and better outcomes; Analysis of themes of ADL areas where people struggled, post-op, and exercises included in post-op appointments; Better wound management protocols.

11 Recent national PROMs activity to facilitate use of the data PROMs data now made available on MyNHS and NHS Choices (since March 2015) Electronic PROM data collection project working with ISIS Outcomes Ltd COMING SOON a How To guide on PROMs, which will be a by-product of the Insight Strategy, being developed over the Summer.

12 What data tells us results by dimension Share of patients reporting severe difficulties after hip replacements. Mobility related questions Liverpool National Significant (at 99.8%) Odds ratio Pain related questions Liverpool National Significant (at 99.8%) Odds ratio Usual activities + self care related questions Liverpool National Significant (at 99.8%) Odds ratio I can walk down one I have extreme I am unable to flight of stairs only with pain or perform my usual extreme difficulty. 10.6% 6.6% N 1.7 discomfort 9.1% 3.6% Y 2.7 activities 27.8% 18.8% N 1.7 It is very painful for me to stand up from a chair because of my hip. 7.5% 3.1% N I have moderate or severe pain 2.5 from my knee 27.8% 18.8% N I am only able to put on my socks, stockings or tights with extreme 1.7 difficulty 29.3% 14.0% Y 2.6 I can walk no further than around my house, before my hip becomes painful. 15.8% 6.7% Y I am troubled by 2.6 pain most nights 20.3% 7.7% Y I can do my household shopping on my own, only with 3.0 extreme difficulty. 10.6% 6.6% N 1.7 I limp when walking, most of the time. 29.3% 14.0% Y I have sudden, severe shooting 2.6 pain, most days. 9.8% 4.6% N I can only get in and out of my car or public transport with extreme 2.2 difficulty 15.8% 6.7% Y 2.6 Pain from my knee has greatly interfered with my work. 48.1% 34.2% N 1.8 I can only wash and dry myself with extreme difficulty 23.5% 11.7% Y 2.3 One in five hip replacement patients are troubled by pain most nights (compared one in 13 nationally). Almost one in ten patients have extreme pain or discomfort (compared to one in 28 nationally). Hip replacement patients at the trust are twice as likely to say that they can only put on their socks, stockings or tights with extreme difficulty. For every 100 patients an additional 15 will struggle with this part of their daily routine (compared to national average). In other words, for every 100 patients at the trust an additional 5 will suffer from extreme pain and an additional 12 will suffer from night pains, most nights (compared to national average).

13 What the data can tell us results by patient group PROMs data can be used to identify groups of patients for which outcomes are better or worse than what would be expected given their characteristics, such as age or comorbidities. To do this, we can split the sample at each trust into patient groups by age, and pre-operative health state. The number in this cell indicates the outcome at the chosen trust for patients aged 60 to 69, and with a low pre-operative health state between 0 and 12 on the Oxford Hip Score. Given the small numbers of patients in many of these groups, results should be taken as an indication only. They indicate potential areas of good or bad performance. This needs to be further corroborated by Trusts through further investigations of identifiable patient-level data. This also allows us to compare results across trusts and identify trusts with similar case-mix who perform better or worse for any given patient group. A g e Pre-operative score (on scale from 0 48) to to to to A positive number indicates that patients aged 80 to 89 and with a high pre-operative health state had better results than what was predicted given their characteristics, using the PROMs case-mix adjustment model.

14 Results by patient group example of an outlier trust. Average actual vs. predicted* outcomes following knee replacement on the Oxford Knee Score, by age and pre-operative hip score** A g e Average actual vs. predicted* outcomes following hip replacement on the Oxford Knee Score, by age and pre-operative hip score** A g e Pre-operative score to to to to Pre-operative score to to to to 89 *The case-mix adjustment applied to PROMs data takes into account a range of patient characteristics (including patient age and their health state before surgery). **Averages reported where at least 5 patients fall into a category. Note: differences may not be statistically significant. The data reveals patient groups with substantially worse than expected outcomes (even when taking into account patient characteristics): Patients aged under 60 report worse than expected outcomes following knee replacement. Patients aged between 60 and 70 and with poor pre-operative health following knee replacement. Patients with poor preoperative health, especially when aged under 70, following hip replacement 14

15 Lessons for future PROMs

16 Interest in expansion PROM pilots/projects A non-exhaustive list: Cancers (breast, prostate, bowel, bladder, non-hodgkin s lymphoma, womb, ovary and cervix): Publication of four reports national perspective on living with and beyond colorectal cancer, and x3 pilot reports about living with and beyond cancers of the womb, ovary or cervix (March 2015). Prostate Cancer UK are the first charity to solely fund a UK-wide PROM project. Cardiovascular revascularisation: pilot data collected, analysis and final report due. Renal replacement: Being developed at the UKRR; will look at the link between Patient Activation Measures, Patient Experience and PROMs. Major Trauma Pilot sites already collecting data some investment from the Medical Directorate Musculoskeletal Dementia: DEMQoL development through National Institute for Health Research (NIHR) Long-term conditions: As for dementia, development through NIHR. Dentistry HIV In development independently of NHS England Mental Health REQoL; measures of depression

17 What is the data for? Purpose Questions Type of PROMs Coverage type 1 Clinical interventions research/ academic enquiry Does a given treatment work? What are the outcomes for patients with a given condition/ course of treatment? Condition-specific One-off survey 2 Health economic evaluation 3 Performance monitoring for commissioning : local and national 4 Services / care pathway quality improvement and monitoring 5 Transparency : resource allocation, inequalities ;regulation 6 Patient choice, self-care and activation Are treatments cost-effective in practice? Are there variations in practice that coincide with variations in outcomes? What is the variation in outcomes across providers? Are certain providers delivering better or worse outcomes? What elements of health services can be improved? To provide information on outcomes as in 3. above to patients and the wider public does the intervention improve QoL? To provide information about what works and allow patients to direct / manage their care Generic EQ-5D Condition-specific Condition-specific + Patientdetermined See 3. See 3. Condition-specific + Patientdetermined Repeated survey Census (unless very large numbers) Census requires linkage to process data, e.g. audits As part of clinical practice 17

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