Many providers of care are beginning to take it upon themselves to consider the patient perspective. A recent movement to include Patient Reported Outcome Measures (PROMs) is a good example of this.
For many orthopedic procedures the outcomes are assessed by the surgeons themselves. By and large their interest is to make sure that they have done the job correctly – that they have followed the correct protocols, made no mistakes, and that the surgery is healed. For knee replacements and hip surgery, actual mobility tests tend to be rudimentary with questions like, “Can you walk across the room for me?†or “Are you feeling any pain?†Often the surgery is considered to be successful even if the patient experienced only minimal gains, like slightly increased mobility or mild reduction in pain.
There is much optimism surrounding the introduction of PROMs, and there should be. Bringing the patient perspective to this would clearly extend the ways in which outcomes would be measured, and ultimately it would better reflect a more practical sense of outcomes for patients.
The January 2012 issue of Longwood’s HealthcarePapers argued for the value of PROMs and promoted their expansion to include more than orthopedic procedures. I wrote a short paper on the patients’ perspective of PROMs for the issue.
I looked for a gold standard for orthopedic PROMs for knee replacement and found the Oxford Knee Scores:
1. How would you describe the pain you usually have from your knee?
2. Have you had any trouble with washing and drying yourself (all over) because of your knee?
3. Have you had any trouble getting in and out of a car or using public transport because of your knee? (whichever you tend to use)
4. For how long have you been able to walk before the pain from your knee becomes severe? (with or without a stick)
5. After a meal (sat at a table), how painful has it been for you to stand up from a chair because of your knee?
6. Have you been limping when walking because of your knee?
7. Could you kneel down and get up again afterwards?
8. Have you been troubled by pain from your knee in bed at night?
9. How much has pain from your knee interfered with your usual work (including housework)?
10. Have you felt that your knee might suddenly "give way" or let you down?
11. Could you do the household shopping on your own?
12. Could you walk down a flight of stairs?
These 12 questions are certainly a far cry from the earlier methods of evaluating the effects of knee surgery, and this change should be celebrated. Nonetheless it turns out that the Oxford Knee Scores were created after asking patients, but still, the 12 questions were selected by researchers and doctors.The results of the Oxford Knee Scores are not without consequence. In my paper I wrote that:
The results that have come in from use of PROMs in the NHS indicate that knee replacements are successful in reducing pain and increasing general health and activities of daily living. The NHS reports that "91.5 per cent of knee replacement respondents recorded joint related improvements following their operation as measured by their response to a series of questions about their condition (Oxford Knee Scores)" (NHS 2011). Using the scale, patients overwhelmingly confirm the value of these surgical interventions. In policy terms, if the measures we are to identify and concentrate on are the ones listed and the success rate is as high as indicated here, then the clear policy solution is to lower the threshold for surgical interventions and provide even more joint replacements. This consequence is not atypical in a system that focuses on acute interventions, and much of the evidence-based research provides measures to support this.
But is the success rate this high? The 12 questions still leave out quite a lot from the patients’ point of view. The daughter of one patient told us that her mother decided to have knee replacement surgery because she wanted to garden again. Despite using a lot of padding and trying fancy tools, it remained impossible for her to garden following the surgery. It simply did not bring her knees back to the point where she could engage in her favourite activity.
Should the PROMs include the ability to garden? Not exactly. But they should ask whether the patient could engage in the activity that they most wanted to do following the surgery. They should probably also ask whether the patient recommends the surgery to others. The point of this is to make the success rate more closely related to how people live their lives, and less focused on the success of the surgery as a process. A 91% success rate in orthopedic surgery of any kind should raise red flags about what kind of measurements are used.
I believe that PROMs are an important step forward, but it is critical that they be developed with close patient involvement. They must capture more about the consequences of medical interventions, and the expectations and experience of patients. The Oxford Knee Scores are currently accepted as the gold standard, but they have yet to reflect the true experience of patients. We still have a long way to go.
The Patients’ Association of Canada along with some of its partners are embarking on an effort to discover hard measures that would indicate whether or not a service is genuinely sensitive to the patient perspective. We are excited to explore these new Key Performance Indicators, and will be sharing our progress in future blog posts.