What Can Rheumatologists Learn?

My youngest son’s best friend was diagnosed last week with type 1 diabetes.  I am amazed at the education and support the family is getting.  This won’t be a post about diabetes, though.  I’ve been thinking about the difference between how newly diagnosed diabetes patients are treated and how newly diagnosed RA patients are treated.

It’s pretty common for a primary care doctor to diagnose RA and write a referral to a rheumatologist.  Depending on the part of the country, there’s a 2-3 month wait until the rheumy has a new-patient appointment open (so much for early, aggressive treatment).  On the other hand, a kid diagnosed with diabetes is seen by a specialist within a few hours.  Obviously there’s a need for a new diabetic to be seen promptly, so doctors arrange their schedules accordingly.  Why can’t rheumatologists keep a few new-patient appointments open so that people can be seen and treated in a timely manner?

In theory, RA patients can benefit from physical therapists, occupational therapists, psychologists, podiatrists, and neurologists, but only learn about some of those options from online support groups, not from their doctors.  What a difference with diabetes!  At the hospital, a whole team of people introduced themselves, did some teaching, and explained how that particular specialty could be of assistance.  The family saw an endocrinologist, a psychologist, a diabetes educator, a nutritionist, and a slew of others, too.

understanding_diabetes_book3aThe diabetes educators wanted to talk to our friends’ entire family, and gave them a notebook to store all their handouts.  Our friends were given a little book to use for looking up the carb count on just about any food they might think of, and taught how to use it.  They were taught about diabetes and what they need to do to control it, then given a terrific book explaining all that information again so that the teaching gets reinforced.  On the other hand, RA patients receive… nothing.  Families are told… nothing.

Disease control is another area where there’s a huge discrepancy.  Diabetes patients are under control when they leave the hospital.  RA patients take 3-12 months, if they’re lucky, to get under control.

After my son’s friend left the hospital, he had a follow-up appointment at the clinic two days later.  The appointment was 3 hours long and provided additional education.  After an RA patient finally gets in to see a rheumatologist, follow-up is a 20 minute appointment in three months.

How easy is it for RA patients to contact their doctor with a question?  The endocrinologist seeing my son’s friend provided his business card with clinic and cell number on it, and emphasized that there is 24 hour support available; they’re to call any time they have a question.  The doctor explained clearly that after hours, there are nurses who stay up all night just to answer phone calls, and it is okay to call in the middle of the night.  There’s no need to wait for the office to open; just call.

Now, I understand that DKA is an emergency in need of immediate treatment; RA isn’t an emergency.  That doesn’t mean that RA patients don’t need and want information and some support to figure out how to deal with our new normal.  There are medicines that can help, and it is unconscionable to hand RA patients a prescription for something that might help in 3-6 months and tell us we’ll just have to suffer in the meantime.

I suspect there’s a lot that rheumatologists could learn from pediatric endocrinologists.  I also suspect that, in the long run, insurance companies would save money by funding education and prompt treatment.  What’s it going to take to make it happen?

Epidemiology

Epidemiology is the study of health and disease patterns.  What causes a specific disease?  How does it spread?  How many people are newly diagnosed in a year?  How many people are managing the disease on an ongoing basis?

Two of the statistics that epidemiologists give us are incidence and prevalence.  This topic would bore me to tears if I had to produce these statistics for a living, but when I’m researching a disease, these are numbers that I want to know.  Incidence  tells us about how many new diagnoses are made per year (or, more technically, per any given time period).  Prevalence  tells us how many people are being treated on an ongoing basis during that same time period.

Incidence – In studying rheumatoid arthritis, epidemiologists have learned that for every 100,000 adults, there are an average of 41 new cases of RA diagnosed annually.  The number of people newly diagnosed increases with age:  8.7 per 100,000 for ages 16-34, versus 54 per 100,000 for people over age 80.

Prevalence – For every 100,000 adults, there are 500-920 people dealing with RA on an ongoing basis (statistics vary depending on which diagnostic criteria are used, which country is being considered, and a few other variables).

The incidence and prevalence of other types of autoimmune arthritis varies widely1:

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As you can see, the data on PsA is sub-optimal.  AS is twice as common as RA, yet isn’t nearly as well-known.  MCTD and AOSD have such a low prevalence that they are considered rare diseases by the Office of Rare Diseases of the National Institute of Health, and by Orphanet.  JIA is also listed in the rare diseases database.

Age – Age of onset varies considerably depending on the type of arthritis.  By definition, disease onset before age 16 means that it’s a subtype of Juvenile Idiopathic Arthritis.  Children who receive a diagnosis of one of the subtypes of JIA do not receive a different diagnosis as they age; the diagnosis remains JIA, even if the person lives to be 80 years old.

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These are averages, not rules.  Immune systems don’t read textbooks, thus don’t know when the books say they might malfunction.

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1Statistics on the incidence and prevalence of Sjogren’s Syndrome and UCTD are difficult to find.

Keeping My Thoughts To Myself

We’ve all heard that old joke, “Doctor, it hurts when I do this…”  The doctor responds, “Then don’t do that!”

We laugh, but I’d sure like to see that thought process expanded.  If a medicine is thought to cause adverse effects, why is the solution to add another medicine in hopes of controlling those adverse effects?

Off to the pharmacy I go:

Three weeks later: