Forget about Evidence Based Medicine, listen first to the patients

It happens often that what patients perceive as most effective treatments, usually doctors see as  less important, and what doctors see as most important, based on our evidence based medicine, patients see as undesirable and less effective! Oeps! This is not just a blurp from a doctor of alternative medicine. These are data from a survey among hundreds of spinal cord injury patients, conducted by experts from a world famous institute, the Dutch Rudolf Magnus Institute of Neuroscience and Centre of Excellence for Rehabilitation Medicine, from the University Medical Centre in Utrecht.

Open your eyes and behold! What the doctor prescribes is NOT what the patient wants.

Heutink M, et al. (2011) open our eyes by showing us that patients suffering from spinal cord lesions want other things then doctors prescribe.[1] Treatments that were most often perceived by the patients themselves as effective were: acupuncture, magnetizing, cannabis and alcohol, physiotherapy, exercise, massage (therapy) and relaxation. And be aware, TENS, ultrasound and antidepressants were least often perceived as effective. Is this not an absolute eye opener?

Antidepressants with their NNT of 3 based on clinical trials are seen as most effective non surgical interventions, though patients perceive these as the least effective. And therapies we would regard as probably not effective, such as acupuncture and physiotherapy are perceived by the patients as cost effective. Just as alcohol and cannabis by the way…

The researchers conducted a survey among 575 persons with spinal cord injury. The main outcome measures were the pain intensity score of the Chronic Pain Grade questionnaire, past and current pain treatments, and perceived effectiveness of current pain treatments. The Response rate was impressive for a survey conducted via post: 49% (279 persons) and 215 respondents (77.1%) had neuropathic pain. Most respondents with pain (62.8%) reported more than one pain type, of which neuropathic pain was most frequently reported (69.3%). Of this group with neuropathic pain, 63.8% was currently involved in some kind of treatment, but nevertheless high levels of pain (mean 52.8 on a 0-100 scale) were reported.

Now the results. Massage (therapy)/relaxation (training), anticonvulsants, and non-steroidal anti-inflammatory drugs (NSAIDs) were the most often used treatments. The current treatments that were most often perceived as effective were acupuncture/magnetizing, cannabis/alcohol, physiotherapy and exercise, and massage (therapy)/relaxation (training). TENS/ultrasound and antidepressants were least often perceived as effective.

RCT: an obsolete paradigm

So, what do we learn? If doctors are serious with putting the patients central in their system, they should start listening to them. If patients perceive acupuncture and cannabis as most effective and antidepressants (neuropathic pain medication) as least effective, doctors should not start the therapy with amitriptyline. Furthermore, doctors need to understand that the basic philosophy of their clinical trials is paternalistic. The doctor knows what is good for you. Most of the time the patient’s preference is not honored, nor is the patient usually aware of what kind of treatment he will receive. Is this not clearly totally obsolete, this paradigm? The patient is indeed the only person who can experience the effect of the treatment. So when a patient considers a certain therapy as most effective, doctors should acknowledge this, even when the treatment has not been scientifically evaluated yet in clinical trials. Thus, the doctor should not only take these treatments into account which have been scientifically evaluated thoroughly, but he should also take every treatment seriously in case the patient indicates it as most effective. OK, let us start implementing this knowledge.