Tuesday, January 31, 2012

Sloppy Medical Reporting in Mainstream Media (and Why it Makes Me Crazy)

In the last few days, my Google News feed has been full of media reports about a recent study that was published in the medical journal Arthritis Care & Research. The complete title of the article is "The public health impact of risk factors for physical inactivity in adults with rheumatoid arthritis" and the abstract can be found here. The preferred headlines in places like USAToday, WebMD, and About.com read "2 in 5 Rheumatoid Arthritis Patients Sedentary" and "Too many rheumatoid arthritis patients inactive, study finds." I am incredibly frustrated by both the design of the study and its attention from major media outlets, as well as the underlying assumptions it (and the reporters who have summarized it) make about individuals with Rheumatoid Arthritis (RA) / Rheumatoid Autoimmune Disease (RAD).

1. Research design issues:

First of all, the study involved only 176 adults and it followed their activity level for 7 days. So one week of data based on the experiences of 176 people is being used to extrapolate to the behaviors of the 1.3 million Americans who have RA/RAD. In addition, while the study asked participants to rate things like "lack of motivation" and "lack of strong beliefs" regarding exercise, it's not clear whether they were experiencing pain at the time of the study. Though the abstract claims to have taken pain into consideration, no information is provided regarding self-reported pain levels or Disease Activity Score (DAS).  We have no idea if these individuals had long-standing, well-controlled RA or if they were actively flaring during the (very brief) study.

2. Misplaced media attention:

Despite the small scale of this study, it has made headlines. Why? Likely because it is a relatively straightforward study that makes clear, easy-to-implement recommendations. ("These results support development of interventions that increase motivation for physical activity and that lead to stronger beliefs related to physical activity's benefits should be considered in public health initiatives to reduce the prevalence of physical inactivity in adults with rheumatoid arthritis.") Basically, physicians just need to convince RA-ers of the importance of exercise and they'll do more. It makes a great sound bite and summarizes well, plus it plays into the ongoing obsession with the so-called "Obesity Epidemic" and the American tendency to place blame on individuals and their behavior for chronic health problems.

In the same issue of Arthritis Care & Research two articles on much larger, and to my mind more important, RA/RAD-related studies were published. Both studies came to the conclusion that physicians need to do a better job of assessing and treating their patients' pain. One, "Pain as an important predictor of psychosocial health in patients with rheumatoid arthritis," involved over 15,000 patients and showed a direct link between high pain levels and "psychosocial health variance" (depression, anxiety, negative outlook, etc). The other, "Determinants of discordance in patients' and physicians' assessment of rheumatoid arthritis disease activity," had a cohort of over 7,000 patients. There was a significant disagreement between patients and their doctos in 36% of cases, primarily related to self-report of pain and fatigue. The authors conclude: "Sensitivity to the “disease experience” of patients, particularly pain and fatigue, is warranted for effective care of RA." Why don't studies like these appear in popular media?


3. Damaging assumptions: RA patients are lazy and don't understand the importance of exercise

Based on my experience of talking with other autoimmune arthritis patients, many of us were extremely active in the months and years prior to diagnosis. We are now depressed and unhappy that we have neither the energy nor the strength to continue to exercise like we once did. As recently as a year and a half ago, I was running 10 miles a week and taking dance and yoga classes on top of that. In the past four months, I've been to the gym exactly twice. My current activity level rarely goes beyond walking and gentle stretching. How can it when I get winded and dizzy from walking up a flight of stairs? (And it has to be a good day for me to take the stairs at all!) The pain in my hands and wrists prevents me from doing many of the yoga poses I used to love, and the pain in my feet makes walking long distances painful and running or dancing nearly impossible. I have lost 15-20 pounds in the past year and continue to lose weight. I know, from Kelly's posts at RA Warrior, as well as the conversations I read on Facebook and twitter, that many of us deal with loss of strength and cachexia (muscle wasting), or at the very least are prevented from exercising on a regular basis by the constant pain and fatigue caused by our disease. We understand the benefits of exercise. Perhaps if the studies that focused on managing pain got more attention, we would have more resources to manage our pain, and ultimately be more active. It cannot be the other way around.

When will doctors and researchers see us as individuals who want to be as healthy and pain-free as possible, rather than as Disease Activity Scores and swollen joint counts?

9 comments:

  1. Agreed! Love how you worded this, very well done!

    ReplyDelete
  2. Right on. I think the people creating the study were influenced by the same things as the media: the pervasive idea in our culture that people who are sick/disabled did something to "deserve" it -- we don't eat right (therefore we're fat), we don't like to exercise (therefore we're lazy), etc. People would rather focus on these comforting notions than on knowing that chronic pain and exhaustion happy to young women just because -- for no reason. That means it can happen to them, too, and nobody wants to think about that. That wasn't science; it was propaganda.

    ReplyDelete
  3. Very well written! Now all we need to do is get your blog the same media attention!

    ReplyDelete
  4. Amen to #3. And I still push myself to walk blocks at work despite the RA. I can see the muscle wasting in my arms. Ugg.

    ReplyDelete
  5. Megan, with all due respect, I think you may have missed to the point. To be fair, and fully transparent, I am a rheumatologist who was peripherally involved in this particular study.

    The point of this manuscript was NOT to imply that RA patients are lazy and shiftless and don't want to contribute to their own well-being. The point is that RA patients are fundamentally less physically active than they should be, especially given all that we now know about the link between RA and cardiovascular disease. This study team is very sensitive to the needs of RA patients. In fact, what motivated this study in the first place were two very important facts: physicians do not do enough to encourage their patients to be physically active, and simply telling someone to "get active" is not going to do it. This group has set out to understand why patients are not active (and, yes, it may be due in part to pain and disease activity) and to identify tools that can change this. The observation that lack of motivation and a belief that they can't be active are key drivers of inactivity (as expressed by the participants themselves) has led to the second part of this large study, which is ongoing - a randomized trial of a motivational interviewing technique that they hope will result in more active, healthier, patients.

    Also, I think you need to be careful about drawing conclusions based on just a snippet of the data. It appears you read only the abstract, which admittedly does not fully describe the types of patients studied. However, if you read the full manuscript, you will see that these are patients with long-standing, mostly stable disease. Pain and disease activity were measured, and will be used in the interpretation of the success of the subsequent intervention.  As for extrapolating to the universe of RA patients from a sample of 176, we do this all the time. Sheer numbers themselves don't always tell the whole story. Yes, those other studies you refer to looked at thousands of patients, but is a snippet of potentially inaccurate information from large numbers of patients necessarily more accurate than a detailed analysis of a dataset from a small group that has been fully characterized and well validated? Indeed, the population of patients in this study has been compared to the entire population of RA patients at our institution, and it is very characteristic.

    The simple fact is that two in five of these patients WERE inactive. If you extrapolate this to the entire population of RA patients, this is a major public health problem. Megan, I have no doubt that you want to exercise, and are frustrated by your difficulty doing so, but apparently all of your RA co-sufferers don't agree with you. We DO have to do a better job of addressing the pain of RA, but if we assume that this is the only issue, and ignore the findings in this paper, we do so at the detriment of many people with this disease. We all want to see RA patients leading fuller, more productive lives - we need to explore ALL of the ways in which we can reach this goal.

    ReplyDelete
    Replies
    1. Joint MD- When you say "The point of this manuscript was NOT to imply that RA patients are lazy and shiftless and don't want to contribute to their own well-being." we understand this. But the way media has republished the study implied exactly that. This is why it has upset so many RA patients. Lisa

      Delete
    2. JointMD: Thank you for taking the time to read and respond to my post. Your willingness to do so suggests that you are interested in the individual experiences of RA patients, which is heartening to me.

      At the time I originally wrote this post, I had not been able to access the full article because it was behind a pay wall. I have since been able to access it through my academic institution. Part of my critique, not of the study, but of the media coverage, is that the authors of the articles I linked to seemed to only be reading the abstract as well. This is obviously not the fault of the researchers, but an issue of both the practices of medical reporters and the structure of academic publishing. The two commenters above outline some of the problems with the way this study has been reported in the media.

      As for my "missing the point," I do still have several concerns about both the design of the study and the conclusions that are outlined in the paper. My first critique is of the inclusion criteria as stated in the paper. According to your comment, the participants had “stable disease” (does this mean no active swelling or inflammation? are pain levels taken into consideration?). Nowhere in the inclusion or exclusion criteria does it list disease activity (p. 7). Does disease duration automatically equate to "stable" disease in this model? Why was pain tracked but not fatigue?

      I understand that the goal of the study was to document the activity level of RA patients, and to determine what kind of factors could be targeted to improve the overall activity level of patients. Identifying that some RA patients are unmotivated to exercise, and that some RA patients don’t believe that exercise will help them are both important pieces of information for intervening from a public health perspective. However, I think the study points to something else much more troubling.

      Based on table 1, there's a strong correlation between increased age and lack of physical activity, with less than 20% of RA patients under the age of 45 classified as "inactive," 40% of RA patients between 45 and 65 inactive, and nearly 70% of patients older than 65 inactive. The numbers for patients under 45 correspond very closely to the CDC's BRFSS data on exercise, suggesting that RA patients under 45 are sedentary at roughly the same rate as the general population (or perhaps even *less* sedentary since the BRFSS data are *self-reported*-- imagine if the headlines in popular media read “Young RA patients more active than general population” instead!). The “crisis of inactivity” that this paper points to seems to be centered in the older parts of the RA patient population. Why make sweeping generalizations about all RA patients when there is such a striking difference between the age groups? While it would be great to have 100% of RA patients active, the intervention is most obviously needed in the older patient population.

      Which leads to a series of disquieting questions: Will the younger, more active RA sufferers change their motivations or beliefs as they get older? Or do we see a difference here between individuals who have been diagnosed more recently, versus those who were diagnosed during the period when treatment focused on rest and medication? Perhaps this is a generational difference? Or will the younger patients, like me and many of my fellow autoimmune arthritis sufferers in their 20s-40s, begin by desiring to exercise, and slowly become less and less active as the disease progresses because we begin to see ourselves as people who *cannot* be active? Likely your answer to these questions will be that they are beyond the scope of this study. Yet I doubt any of the interventions developed from this study will be useful without considering why certain patient populations hold certain beliefs and whether/how these beliefs change over time.

      Delete
  6. Joint MD- For me the frustration is not with the original study, but with the way mainstream media has reported it. At the WebMD post it has in bold lettering- "Many RA Patients Who Avoid Exercise Unaware That Physical Activity Can Ease Symptoms". While statements like this are true. It is taken out of context completely-and because of this, the general public's belief that RA is a 'condition', brought upon ourselves by lack of a healthy lifestyle is only perpetuated. For a serious disease that is so misunderstood, the way the study has been reprinted only reinforces what the public already think. If all it took was physical activity to ease or symptoms, then why should we have to take expensive biologics?

    ReplyDelete
  7. Excellent ripping apart of the study! My first reaction to the "2 out of 5" was a much less articulate "well, duh."

    That other study that shows that 36% disagreement between a doctor and the patient's assessment of pain/fatigue just blows my mind. No wonder so few people have proper pain control when doctors think they know their patients' reality better than the patients themselves.

    ReplyDelete