WHAT CAUGHT OUR EYE
By Jay Mehta, MD
“What about dietary changes?” I’m sure I’m not alone in getting this question more and more frequently with each passing year. It’s interesting that as our drugs get more effective at treating patients, families seem to be more interested in trying to treat with non-pharmacologic means.read more
By Brian M. Feldman, MD, MSc, FRCPC
Point-of-care ultrasound – with its clever acronym POCUS – has become a big thing in rheumatology, and in peds rheum. As someone who hasn’t received ultrasonography training, I find it highly mystifying, and I’m not sure on which side I fall.read more
By Ken Schikler, MD
After Rob Fuhlbrigge’s previous entry regarding the “power of the mind” and physiologic symptoms, I thought it timely to bring up a somewhat related paper. As CARRA members, we are involved in clinical trials that assess the safety and efficacy of an “active intervention” as compared to a “sham” or Placebo intervention.read more
By Robert Fuhlbrigge, MD, PhD
As pediatric rheumatologists, we are familiar with issues of anticipatory nausea in patients taking methotrexate and potent placebo effects that influence the interpretation of clinical trials in our field. The power of the mind to influence physiologic symptoms is impressive. But what if we could harness this power for good? What if you could teach your patients to respond as if they were exposed to a medicine even if they were not?read more
By Kenneth Schikler, MD
After Daniel Horton and his collaborators reported on the results of their nested case-controlled study regarding antibiotic exposure and JIA in Pediatrics (2015 vol 136 issue 2), the same group of data-miners did a similar, nested case-control study from UK’s Health Improvement Network data on children aged 1-15 years with newly diagnosed psoriasis, excluding those children with “juvenile arthritis”, immunodeficiency, or inflammatory bowel disease.read more
By Brian Feldman
What’s old is new, right? We used to have the patient history – now we have “patient reported outcome measures“. We used to have the physical exam, and other signs (like, say, lab tests or Xrays) – now we have “biomarkers“. It’s kind of cool how we can spin all that old fashioned stuff into… well… new-fashioned stuff.read more
With newer biologics allowing us to more effectively treat JIA and put many more kids into remission, it’s worth taking a moment to think about whether there could be some innocent bystanders from our targeted attacks on the immune system. With that in mind, we were...read more
By Brian Feldman
In case you missed it, the microbiome is really hot news these days.read more
Are we doing enough sharing with our caring?
July 15, 2016
By Jay Mehta, MD
As the parent of a 4-year-old, and the resident of a major metropolitan area, the word “share” (and its various constructions) is a daily part of my lexicon. I’m constantly reminding my daughter the importance of “sharing” (which she thinks is giving her friends the toy that she doesn’t want to play with). The other day I took an Uber, and on my last vacation, I stayed in a house I found on AirBnB, both of which are parts of the “sharing economy.” And yesterday, I “shared” with my Twitter followers an interesting article on medical education.
As physicians, we are, no doubt, familiar with the concept of “shared decision making (SDM),” in which both the clinician and patient (and/or parents) express their opinions and values and a decision about how to proceed is made together. (For her part, the previously mentioned 4-year-old tried to engage in shared decision making with my wife and me when we told her she was going to have a little brother: “I don’t want a little brother. Can I have a sister instead?”). Our adult colleagues have embraced SDM in recent RA Treat to Target recommendations (Overarching Principle A: “The treatment of RA must be based on a shared decision between patient and rheumatologist.”). In other chronic diseases, SDM has been shown to improve adherence and, in pediatrics, SDM has been associated with decreased decisional conflict and improved knowledge.
So it’s no surprise that 75% of pediatric rheumatologists and gastroenterologists (no difference in responses between the two specialties) say that SDM is their typical approach initiating anti-TNFα agents, as reported in a recent paper in the Journal of Pediatrics by colleagues at Cincinnati Children’s Hospital (including CARRA’s own Dan Lovell). In this study, use of SDM was assessed by presenting 4 examples of approaches to treatment decision making and asking which the respondent would use. They then asked what factors facilitated SDM and found that parent trust and parent emotional readiness were very helpful. When using SDM with adolescents, patient trust, emotional readiness, and the patient being ready for the discussion were thought to facilitate the discussion.
They also investigated what kept pediatric rheumatologists and gastroenterologists from using SDM. They found that insurance limitations and adolescent difficulty with accepting the diagnosis were the main hindrances. We’ve all had the adolescent who refuses to believe he or she is sick. That patient’s preferences include “Let me go home.”
But what really caught my eye is that the same group of authors found that what we say we should be doing is not actually what happens in the real world. They observed real clinic visits with pediatric rheumatologists and gastroenterologists where prescribing biologics was discussed. In almost all of these discussions, the patient was not included in the discussion. In most discussions, the provider provided detailed information about his or her preferred treatment option, and there was not much elicitation of parental preferences, treatment goals, or parental knowledge. Even though it was rarely requested, an explicit treatment recommendation was given in almost all visits. Most surprising, in 1/3 of visits, a treatment decision was never made explicit but the provider took steps to implement the preferred treatment.
So where’s the disconnect? Why are we not as good as we think we are, like the 80% of people who think they are above-average drivers? Personally, I didn’t realize there’s a systematic approach to SDM, that it’s not just “Here are the ways we can treat your child’s arthritis. What do you want to do?” Rather, it’s important to start by reminding parents they have options and that their preferences are important, and only then present the options, all the while exploring the patient’s and parent’s preferences. Finally, if a decision is made (which doesn’t need to happen right then and there) we need to remind patients that we will re-review the decision in the future.
Voltaire said “The art of medicine consists of amusing the patient while nature cures the disease.” As the annoyed looks my teenage patients often give me when I try to make jokes indicate, sometimes patients just don’t want to be amused. I should probably first ask them what they prefer.
Share your thoughts about What Caught Our Eye in the comments section!
More from What Caught Our Eye
Perhaps you missed the New York Times article published in October 2015, “Overselling Breast Feeding” or the firestorm that erupted afterwards. I didn’t. I was up nursing my newborn on our first week home and reading resultant Facebook posts, emails, and even an...read more
By Jay Mehta, MD
As the parent of a 4-year-old, and the resident of a major metropolitan area, the word “share” (and its various constructions) is a daily part of my lexicon. I’m constantly reminding my daughter the importance of “sharing” (which she thinks is giving her friends the toy that she doesn’t want to play with). The other day I took an Uber, and on my last vacation, I stayed in a house I found on AirBnB, both of which are parts of the “sharing economy.” And yesterday, I “shared” with my Twitter followers an interesting article on medical education.read more
By Kenneth Schikler, MD
As I am sure occasionally happens to us periodically, a young toddler was referred to me by gastroenterology after being evaluated for hepatopathy regarding elevated “liver enzymes.” This young boy ended up having muscle disease, and genetic testing confirmed Duchenne Dystrophinopathy. While he has been sent on to our MDA clinic for his future care, I was interested in looking into what was new in Muscular Dystrophy.read more
by Brian M. Feldman, MD, MSc, FRCPC
We often hear of the glass ceiling that prevents the rise of women in academic medicine. In 2016, there is still much gender inequality in the world, as the UN clearly pointed out late last year. I’m old enough to remember the iconic “bra-burning” episodes in the 1960s; while much has been achieved, it’s remarkable how far we still have to go.read more