Articles

CAM Use by Brain Tumor Patients

A recent article in the journal Neurology reports the results of an observational study regarding the use of so-called complementary and alternative medicine (CAM) by patients with an incurable brain glioma. They found that 40% of patients sought some type of CAM treatment. These results are in line with prior surveys, but require closer inspection.

The study defined CAM as:

Complementary therapy was defined as methods or compounds not used in routine clinical practice and not scientifically evaluated.

This is a problematic definition, but reflects the fact that there is no universally accepted and clean definition of CAM. CAM is a hodge-podge of therapies and modalities that have only one thing in common – they have not met the science-based standard of care. It is not accurate to say that they are “not scientifically evaluated.” Some CAM therapies have not been evaluated, but many have, and have already been adequately found to lack efficacy. In the current study homeopathic remedies were the most commonly reported. Homeopathy has certainly been studied – and found to be indistinguishable from placebo.

Even my quick definition above does not constitute an operational definition of CAM. There are some modalities that have not yet been demonstrated to be safe and effective, but are used in conventional medicine because they are highly plausible and effective alternatives are lacking – so plausibility needs to be taken into account as well. I think the best definition of CAM is that it constitutes a double standard, by which therapies are promoted with a philosophical justification (because they are “natural” or empowering, for example) and deviate from the accepted ethical and science-based standard of an appropriate risk vs benefit analysis in the context of informed consent. In other words, they are therapies that should be rejected based upon the usually accepted calculus of clinical decision making, but sneak through the back door through the bait-and-switch of feel-good philosophy or deceptive marketing.

The definition of CAM used in the study is not a small detail, but a central feature of studies of CAM use that has a profound effect of the results. Many previous surveys of CAM use have used an overly broad definition of CAM and therefore have grossly elevated the apparent size of the CAM phenomenon. For example, some studies have included prayer as CAM – so any time a loved-one prays for their sick family-member, they are using CAM. Vitamin supplements are an example of something that is in the gray zone. Taking megadoses of vitamins as a therapeutic intervention should be considered CAM. But not everyone who takes vitamin supplements as nutritional insurance during a serious illness should be considered as using CAM. In fact, nutritional supplementation during chemotherapy or around surgery is standard of care. Exercise, simply getting a relaxing massage, or psychologically based therapies are too lumped in with CAM.

In the current study, which was conducted in Germany:

Of those who used alternative treatments, 39 percent used homeopathy, 31 percent used vitamin supplements and 29 percent used various psychological methods.

Therefore, 60% of those who were counted as using CAM in this study either took vitamins or used some sort of psychological therapy. These are both categories that can contain legitimate or dubious interventions, so it is impossible to know how to interpret those numbers. Homeopathy, which made up 39% (leaving only 1% for everything else) is 100% nonsense and unequivocally qualifies as CAM. It should be noted that homeopathy is fairly popular in German (and Europe generally) and so this result is not surprising.

Further, this study utilized a questionnaire, which means there was self-selection in those patients who chose to complete and return the questionnaire. It is likely that this method would artificially elevate the numbers, as those patients who are interested in CAM may be more likely to fill out a questionnaire about CAM.

The study also found that CAM use is greater in those who are younger, in women, and those with greater education. This also fits with prior surveys. The increased use in those with higher education likely relates to the availability of disposable income. However, studies have also shown that increased education correlates with increased openness to the paranormal and other pseudosciences (until you get to the level of postgraduate science eduction). This phenomenon is likely affected by other variables and at least one other study showed a slight negative correlation between education and paranormal belief.

The survey also found that people chose to use CAM primarily because they wanted to add an additional modality to their standard treatment – again, in line with prior studies. Essentially, people want to hedge their bets and make sure they are availing themselves of anything that might help. This is like playing the health-care lottery – they may know there is a small chance of benefit, but they don’t want to lose that small chance. The good news is that most people who did use CAM used it in addition to conventional therapy.

Such decisions are often based upon the false belief that CAM therapies are harmless, which is further often based upon the justification that they are “natural.” In the case of homeopathy, most homeopathic remedies are directly harmless in that they contain nothing (although some may be only slightly diluted and contain measurable amounts of substance that can be toxic – as was seen in the recent Zicam case). However, not all CAM therapies are non-toxic. Megadoses of vitamins can have side effects – even serious side effects. Herbs are drugs that have all the toxicity and drug-drug interactions of prescription medication. Even psychological therapies can cause direct harm, as is evidenced by false-memory syndrome.

However, much of the harm that comes from CAM use derives from indirect harm – mostly from a delay or absence of evidence-based therapy. In a recent article the Australian Pediatric Surveillance Unit reports that between 2001-2003 there were 39 separate reported incidences of serious harm resulting form CAM use in children. Most of the harm was caused by a delay in proper treatment.

The survey also found that patients chose to use CAM because they wanted control over their own treatment. This supports the observation that CAM is often promoted based upon that appeal – self-empowerment.

Respondents to the survey generally did not report that they chose to use CAM because they were dissatisfied with their physicians or their care. This is often the claim made by CAM proponents, that the alleged popularity of CAM is driven by deficiencies in conventional medicine. But there is not evidence to support that claim, and this and other surveys show it is not the case.

Conclusion

This study, which has significant weaknesses, none-the-less supports prior studies about CAM use. It demonstrates that the popularity of CAM is generally exaggerated, primarily by expanding the loose definition of CAM to include common activities. Most patients who use CAM do so in addition to conventional therapy, and primarily for philosophical reasons ad not out of dissatisfaction with conventional care.

Posted in: Epidemiology

Leave a Comment (11) ↓

11 thoughts on “CAM Use by Brain Tumor Patients

  1. windriven says:

    “In a recent article the Australian Pediatric Surveillance Unit reports that between 2001-2003 there were 39 separate reported incidences of serious harm resulting form CAM use in children.”

    Is prayer or ‘faith healing’ counted in this total?

    There have been several high profile cases in the US where children have died from easily manageable diseases while their parents prayed for divine intervention. Is this generally included in studies of CAM?

  2. S.C. former shruggie says:

    The local newspaper released some year-end poll results, including a claim that 47% of city residents had used CAM in the past year. No explanation of who conducted the poll or what was included in CAM, of course.

    How can you get reliable information about a field that’s defined by magic thinking and relentless self-promotion? How do you measure a thing that lives of fuzzy definitions and fudged numbers?

  3. qetzal says:

    I think it’s extremely sad that 16% of incurable glioma patients in this study apparently thought that homeopathy might help them. (39% homeopathy users from the 40% of total CAM users.)

    I understand their desire to try anything with even a remote chance of benefit, but homeopathy doesn’t even offer that. To think that they’re wasting their time, hope, and money on magic water is just depressing.

  4. pmoran says:

    qetzal: I think it’s extremely sad that 16% of incurable glioma patients in this study apparently thought that homeopathy might help them.

    This is not from any general approval of homeopathy as CAM for cancer, but because of publications such as this http://www.labhomeopatico.com/articulo1ing.pdf

    This group also claim dramatic clinical results from Ruta6 and calcium. Glioma patients will get to hear of this the instant they consult the Internet.

  5. qetzal says:

    pmoran,

    No doubt. More’s the shame.

  6. lizditz says:

    I apologize, I only read the abstract.

    Leaving aside the question of homeopathy (=magic water, or =magic water dripped on sugar pills):

    First, did the study address the issue of patients using CAM to improve quality of life vs. the hope of extending life?

    Second, in my direct experience of four family members with terminal cancer, ranging from 1991 to 2009, some CAM modalities such as massage materially contributed to quality of life, especially in the final weeks of illness.

    In the non-CAM but non-oncology area, the advice and guidance of a speech-language pathologist (SLP) with feeding issues experience materially contributed to one family member’s quality of life, in that he was able to continue to eat favored dishes for about 10 weeks longer — prior to death — when presented in forms that he could manage. This only came about because the SLP was a family friend.

    In another non-CAM but non-oncology area, another family member regained mobility for another 6 weeks, thanks to the advice of a PT with experience with debilitated patients.

    No, these examples aren’t directly CAM — but I wonder if the study authors would have coded such PT or OT services to people with gliomas as “CAM”.

  7. liz – those are great examples of the fuzzy area. But I would not count any of those things as CAM. Even massage – such quality of life interventions like massage should not even be controversial. I also don’t see the point in studying them, if the only claim is that it feels good.

    But simple feel-good interventions are labeled as CAM, then they are studied and (surprise, surprise) the study finds that these interventions make people feel good. Then this is used to promote the broad category of CAM. It’s another bait-and-switch.

  8. Anthro says:

    @Dr. Novella Re: Massage as “therapy”

    I have had about ten massages in the last three or four years–all at different places. Every single one of them has presented herself as some kind of “healer” or “practitioner”. Each has “taken a history” of my medical issues, complaints and “treatment goals”. Each has “counseled” me throughout the massage about any number of CAM therapies and the “root” causes of my medical issues as well as the aches and pains I got the massage for. I was told of the “spiritual meaning” of the “tightness in my neck muscles” and so on. They went on even though I clearly stated that I “don’t do woo” (which I clarified), and that I only get a massage because if feels good.

    I don’t think massage is as innocuous as you suggest, not in my experience anyway. None of them has refrained from claims that go far beyond the “feel good” level.

  9. BillyJoe says:

    Steven,

    Essentially, people want to hedge their bets and make sure they are availing themselves of anything that might help.

    But they don’t actually do that.

    There are hundreds of different CAM nostrums they might avail themselves of, but they generally choose only one or two. And there is no rationale for which particular CAM nostrums they choose. It’s usually something a friend suggested, or the result of an article they read.

    I often wonder whether we should ask CAM users this question: Why did you stop at [whatever they are using]? What about coffee enemas, noni juice, colloidal silver [add as may as you like and indicate there are about 200 in the list], why aren’t you using them as well?

    It seems to me it would make them think a little about what they’re doing. It seems to me it might make them think a bit more about choosing wisely (ie science/evidence based treatments)

  10. Harriet Hall says:

    Billy Joe,

    I’m guessing the CAM user would say what a friend of mine says: “I don’t know about those other things, but I chose the one I did because a friend told me it worked for him and since it didn’t have any dangerous side effects, and wasn’t too expensive, I thought it was reasonable to try it and see if it worked for me.”

    I’m wondering if it would work to ask a CAM user to name a CAM that he rejects and get him to think about why he doesn’t believe in that one, but does believe in the one he chose. Has anyone tried that approach?

  11. Meggieo says:

    It is interesting to me that CAM treatments were studied in “incurable gliomas.” If it’s incurable, isn’t everything CAM? My dad died of a glioblastoma multiforme, and from the beginning, we let him decide how much was “too much.” They placed chemo wafers after removing the initial tumor (left temporal, golf ball sized), then he did chemo and radiation as prescribed. When the tumor returned about seven months later, he did gamma knife radiation followed by a few weeks of Thalidomide, which he stopped due to decreased quality of life on it. While there were many, many other recommendations from a variety of people, those were the treatments he was comfortable with, and he lived 15 months from diagnosis (in 2003). While I’ve heard of other promising treatments lately, that was 3 months longer than his neurosurgeon estimated at the time. This article was interesting to read, thinking about how we “treat” the incurable. Thanks for the food for thought!

Comments are closed.