Stephen A. Paget, MD: My name is Dr. Stephen A. Paget. I am the Chief of Rheumatology at the Hospital for Special Surgery. It is a pleasure today to introduce Dr. Edward Jones, an Assistant Attending Physician at the Hospital for Special Surgery and an Assistant Professor at the Weil Cornell College of Medicine. Dr. Jones is one of our directors of our Outcomes Unit, and we are pleased today to talk to him about what the Outcomes Unit is and the importance to patients and science in general. Biff, could you tell us what the Outcomes Unit is all about, why it was formed and what its roll is?
Edward C. Jones, MD: Yes, Steve. About 5 years ago, the hospital made a commitment both in orthopaedics and rheumatology to begin clinical outcomes research. I think the thing that is special about that type of research that, in addition to the traditional clinical data - physician-derived data that we would use in our research - we were also interested in getting quality of life data - patient- derived data obtained through validated questionnaires or instruments. So that we have that element of the impact on the patient, both on the condition and how they benefit from the treatment. With this thought in mind, the hospital has organized this Center for Clinical Outcomes and Research, which is sort of the resource through which we can coordinate and run a lot of these research projects with that kind of clinical outcome goal in mind.
Stephen A. Paget, MD: We've taken care of patients well over the years. What's changed? Why is this better than the old way of assessing outcome?
Edward C. Jones, MD: I think the thing that is most exciting about it is the quality of life issue - the patient-derived aspect of looking at conditions and their treatment and the benefit of treatment. It is establishing, at a baseline, the impact of severe arthritis on a patient, or rotator cuff tear of the shoulder, or cruciate ligament tear of the knee, and finding out how it affects the patient - pain, function, quality of life, roles at home, roles at work - and measuring that at a baseline and then with an intervention. Obviously you are trying to solve the problem, trying to improve their condition. So by again questioning them in the same way, using very importantly validated questionnaires that are objective measures of their pain and function, watching their improvement over appropriate intervals, in that way we are getting a sense of how we are helping the patient. We get a real sense of the quality of our care, and that is something that we are all very interested in.
Stephen A. Paget, MD: So if somebody has diabetes and you follow their sugar, or they have hypertension, you follow their blood pressure, these types of outcome assessments are as good as those in defining outcome and how the patient is doing?
Edward C. Jones, MD: They are, and I think that is one of the hardest things for people to appreciate. People are skeptical that you can measure what seems to be a very subjective type of thing. How are you feeling? How are you functioning? How is this affecting you? But our methodologists have taught us how to develop questionnaires that are valid ,in the sense that they measure what we are interested in measuring. They are reproducible.
If I have a condition, and I fill out the questionnaire, and my condition doesn't change, I fill it out again two days from now or a week from now, I would generally answer it the same way. So my answers are reproducible. A third aspect of it is that they are sensitive. These questionnaires are responsive to the type of change that we expect to see in people and can measure the changes in their life in an objective way. There is quite a lot of testing that goes into developing these questionnaires, but they are quite objective.
Stephen A. Paget, MD: What is the structure of your Outcomes Unit? How does it actually work?
Edward C. Jones, MD: Our Outcomes Unit is under the direction of Bob Marx, who is one of our young attendings here, who is not only an orthopaedic surgeon but is trained in clinical epidemiology and is a fine methodologist. I am a clinician basically turned - all my emphasis now is on research and teaching. We have a biostatistician, and we have research assistants who help us to collect the data. It is a demanding process, as all research is but even more so. There is a lot of data to collect. We are collecting it prospectively. We are looking ahead on these conditions, and the data has to be complete and handled properly and analyzed statistically in the appropriate way. And so we sort of have a team that can accomplish that. All the time, we are working along with the physicians and surgeons who have the research ideas and who are, most commonly, the principal investigators in the various studies. So we are a resource, and we help with methodology and managing data and analyzing data.
Stephen A. Paget, MD: Tell us about your registries?
Edward C. Jones, MD: Well, a patient registry is one way to approach clinical outcome assessment and, in that situation, you are giving questionnaires. You are looking at the patients who have, let's say, a particular diagnosis, say all patients who have arthritis of the hip or some shoulder condition, whatever. And so you are gathering data on that type of patient which we can use later on for specific studies. Or we may have a registry of patients with a certain condition where we are doing a certain type of procedure. One of our most exciting registries right now is the cartilage regeneration. You know, damage to the articular cartilage in the knee is very common in young active people. It's a devastating, very disabling problem, and it is very difficult, one of our major challenges in orthopaedic surgery, to try to solve that problem so the knee doesn't deteriorate to end-stage arthritis. So we have a registry where all patients with that condition, who are receiving perhaps three or four different operations to try to repair or regenerate cartilage, are entered into that registry, and we follow them very closely so that we can compare these treatments down the road and ultimately decide what treatment is best for what patient. And so that is what a general patient registry would be.
Stephen A. Paget, MD: And certainly there you maintain privacy in every way?
Edward C. Jones, MD: Absolutely. It is very important throughout all of our research -- that privacy and respect for the patients. And we understand that the data is very important and has to be used in the proper way and not abused of course.
Stephen A. Paget, MD: Can you describe a study in a given area and how it has affected treatment and the way people are cared for?
Edward C. Jones, MD: Well, one study, for example, that is ongoing would be a different type of study where, instead of a general registry, it's a hypothesis-driven study. One study that is going on is a study of patients with herniated disks in their lumbar spine. The question is: Is surgery the solution for those patients, or is conservative non-operative care a better way to manage them? And that study is ongoing and, when we complete the study, we hope to have a good idea, again, what is the best way to get a good quality result on that condition.
One that we've perhaps made more progress on is patients with massive tears of the rotator cuff of the shoulder. And we have found from that study that often a more conservative approach, it might be a surgery to do a debridement where you are cleaning up the area and kind of relieving the stress on it, might be a better outcome for that patient than a more ambitious procedure to try to reconstruct a rotator cuff tendon that is massively torn. So these are the kinds of things that we are seeing.
Stephen A. Paget, MD: What other studies do you have planned for the future?
Edward C. Jones, MD: Well, we are, of course, looking at some of the very common conditions that we treat here. We see a lot of patients with end-stage arthritis of the hip and of the knee, for example, and so we are looking at those patients both in a general registry but more specifically on variations on the procedure. What is the best way to do it? What is the best implant for the knee, for example, for patients in the younger age group, the older age group? So that will be one area that we will be looking at.
The other area of challenge where we have a lot of patients at this hospital is in the area of sports medicine - young athletic people. This doesn't have to be professional athletes. This is anybody who is young and active and has a problem, and there are many, many questions there to be answered. One that is exciting now, that we are just establishing a study on, is on anterior cruciate ligament tear of the knee, which is a very common injury. And we have, we think, much better results in our surgical treatment of that particular condition now, but there are some unanswered questions. For example, what is the best graft to use? Should you use the patellar tendon, or the hamstring tendon to substitute for the torn cruciate ligament? Is it better to use one in women or one in high performance athletes? And we are not sure. They are both very good. We have the opportunity here to make very, very fine distinctions between the quality of result with one treatment versus another, and that is something that we are excited about doing.
Stephen A. Paget, MD: So what do you envision for the future, that patients will be helped by this and even basic scientists will be stimulated by interesting findings that are brought up in your outcome studies?
Edward C. Jones, MD: Absolutely! I think that this is going to have a real impact on the quality of our care. It is going to help us understand how successful we are at treating certain conditions and help us to change, help us to improve our treatment. I think the other thing that it does is that it brings the patient more into the process. Patients are very excited about this. Patients, you think, well, gee they have yet another form or questionnaire to fill out, and they wouldn't be very receptive, but in fact they are. The questions on there are really getting to the issues that trouble them, and so patients are enjoying participating in these studies.
The other broad area, of course, it is measuring the quality of our care. How successfully are we treating the conditions that we see so often here? And, of course, then you add cost; quality at a certain cost is value. What is the value of our care? And in this market place, where the health care dollar is being contested and we are all trying to be efficient and economical and justify our fees to the insurance companies and to Medicare and so forth, it is very important to show the quality of work and the value of your work.
Stephen A. Paget, MD: Finally what is quality of life and why should we care about it?
Edward C. Jones, MD: Quality of life is basically "How you are doing?" How you are doing every day? It is not only, do you have pain and how severe is the pain and where is the pain. But how does the pain interfere with your life? Does it interrupt your sleep? Does it prevent you from playing a sport that you might want to participate in or conditioning? Does it prevent you from picking up your child or playing with your child that you'd like to do? So it is the sum of these, of the impact of these conditions, if you have a stiffness of the shoulder, an instability of the knee. How does that effect your function? How does it limit what you can do ever day? Obviously, these are all things that impact on how your are feeling and the quality of your life. So it is a very broadly applied interest in all the things that matter to patients. I think that is probably the bottom line. These are questions and issues that matter most to patients.
Stephen A. Paget, MD: And this would be patient-focused - so a housewife would have different needs and desires out of life than a professional ballplayer?
Edward C. Jones, MD: Absolutely! It allows you to distinguish between the needs and the expectations. Patients' expectations are very important, and that is another area where we are trying to create surveys and questionnaires - so we really understand what patients want when they come with a certain condition and, by understanding that, and again in an objective way as best we can with these questionnaires, we can understand what the housewife with a certain condition really wants to achieve, what they want to get out of the treatment versus a high performance athlete, who may have different needs and expectations. And it isn't until then that you really fully understand the specific needs and expectations of the individual - not, you know, everybody lumped together in one sort of treatment group but the individual - that you can tailor and customize your treatment to that patient and meet their expectations and have them be satisfied with what you are doing for them.
Stephen A. Paget, MD: Thank you very much, Dr. Jones.
Edward C. Jones, MD: Thank you Steve.
From an interview with Dr. Edward C. Jones by Dr. Stephen A. Paget