Kidney stone prevention course: Illustrated by Raphael School of Athens

KIDNEY STONE PREVENTION COURSE

Our newest venture – the Kidney Stone Prevention Course.

It arose from this idea: Kidney stone prevention depends a lot on proper diet and fluids, which patients control. This site tells people what that diet and what those fluids should be, but not how to eat that diet or drink those fluids in real life.

They have to learn how.

So we built the kidney stone prevention course to help them learn.

Just as Raphael imagined generations of brilliant minds come alive together in The School of Athens (Raphael, 1509 -1511; Apostolic Palace in the Vatican.), we – on a vastly lower plane of existence – imagined and have, in the kidney stone prevention course actuated the knowledge on this site into real life. 

The Missing Link

Physicians know this. You can’t learn to practice from a book – or a website. You learn from other doctors and then perfect yourself in practice.

In the same way, patients cannot learn how to implement a prevention plan just by reading. They need a teacher. Then they can perfect themselves over time.

Now you know my assumption, my working hypothesis if you want to be fancy.

Who Shall Teach Kidney Stone Prevention?

Physicians

Certainly. But how much, how long, in what detail?

Do I have an hour for this? For each patient? Food is a big topic, almost infinitely detailed. Thousands of choices in each food category. I say, we need 65 mEq/d of diet sodium. I point out food labels. Portion sizes. Problems of eating out, take in. My hour passes as a cloud in summer, here and gone again. My patient leaves and is not educated enough to practice wisely. Too little, too short a time.

In fact, stone experts at one outstanding kidney stone prevention center now offer courses to scale education. Perhaps this will become more common with time. Perhaps physicians cannot allocate time to courses within the stringencies of modern practice

Nurses

Certainly, but nurses encounter the same problems as physicians. Who pays? Where does the time come from?

Dieticians

Certainly, and as a prime part of their professional education and training. But most – perhaps almost all – focus on large scale issues like diabetes, hypertension, CKD, and obesity. Kidney stones occupy a niche. Even running courses, the few in that niche suffice for too few patients; the US contains millions of stone formers. To serve them in traditional nutrition counseling demands a great expansion of skills within the profession.

A Kidney Stone Prevention Course

Between the organized and precious skills of professionals and the clutter and sheer chaos of everyday life, let’s interpose public education aimed squarely at diet and fluids for kidney stone prevention – try this and see what happens. Moreover, let us use modern technology to lower cost and save time.

Scale

A course permits one person to educate many people. Social media and web tools scale a course: people need not convene physically.

Cost

Physicians, nurses, nutritionists sell their time. People in a course split the cost amongst them. This makes education more affordable.

Patient Time

An hour of education might require another hour to travel there, park, unpark and go back home or to work. That takes time from work, or children, or other matters. A course transmitted using modern media makes travel to some one place unnecessary.

Curriculum

Any course arises from some compendium of reliable knowledge. Physicians and nurses and dieticians possess such knowledge in their minds but students in a course have no access to it apart from the hours of teaching. Just as patients cannot learn to manage diet and fluids by reading they cannot learn just by listening; they and their teachers need to share a common base of knowledge – like the textbook for any conventional course in a school or on the web.

We Have Produced a Kidney Stone Prevention Course

We have done it. I and my writing colleague Jill Harris.

It Depends on this Site as its Knowledge Base

Jill wrote many of the most popular articles on the site about diet and fluids, and set out to find a way to use her materials as a course for patients. She and they can use other articles as well as source material. The site itself rests on a foundation of peer reviewed articles from PubMed to which its main articles link.

She Does One on One Patient Education and Finds it Limiting

For a long time, Jill has worked one on one with stone patients and encountered the problems of scale and cost. She long ago gave up on a fixed office format and coaches by phone or web media. But even so, scale and cost limit her reach. For 12 years she did brief education calls for thousands of patients nationally who used Litholink as their testing service. From her practice and her past Jill came to understand that scale and media and cost create many kinds of compromises in what patients can get.

She Uses Social Media to Form Active Support Groups

The web abounds in spontaneous social media groups of kidney stone patients. Patients value them and use them. Jill formed one for those interested in the course and curates it personally.

She Has Tried Her New Course Format Five Times Thus Far

Out of it all she chose her present format and has used it in five courses so far.

Her courses make room for up to 12 people. This size optimizes cost per patient, efficient use of one teacher, and opportunity for each patient to interact and ask questions. It may change with experience.

The main topics follow the medical logic of the site: fluids, sodium, calcium, oxalate, how to read lab reports, and questions and answers. It runs in six one hour sessions. I have personally participated thus far in two question and answer sessions – at the ends of the first two courses.

Where Does the Kidney Stone Prevention Course Fit In?

It fits within this figure that depicts my view of how testing and treatment work for stone prevention.

Things begin when physicians order initial tests (see ‘begin’ on figure) to identify the main abnormalities and make a treatment plan that includes diet and fluids.

Because the kidney stone prevention course aims at enabling the fluid and diet goals, it stands between when physicians identify those urine abnormalities and when patients adjust their fluid intake and diet within their lives so as to correct the abnormalities found.

It could also stand between any subsequent urine abnormalities due to unfavorable fluid or diet use and the retest to determine if the new treatment has the desired effects.

It acts much like Jill’s private coaching but with a group format that conveys greater scale, and lower cost per patient. Group interaction is a side benefit above private coaching. People get the audio file of every session.

They also get email support during the course. How much this adds and whether this can be maintained under increasing scale of courses remains uncertain.

What Has Happened So Far?

To date 57 people have enrolled in 5 courses of which 2 have completed. We have 22 email comments pending return of formal survey questions. Their uniformly positive tone encourages us that the courses are meeting real demands from patients.

Missing Parts

Responses to Poor Retest Outcomes

What happens when the 3 month retest results are poor for patient graduates of the course? Or 6 month, or one year retests?

Presently, nothing.

But in the future we will need another unit, probably individual free standing question and answer sessions for graduates who encounter less than ideal outcomes and need special issues resolved. They cannot redo the whole kidney stone prevention course but need the scale and cost benefits of group education.

Call this offering phase two. It serves not only problems from the 3 month retest but all subsequent problems graduates encounter within the purview of fluid and diet management.

Timely Review for Successful Graduates

Those of us with a long experience know that success breeds failure, that years stone free create a sense that all is well. But it may not be well and stones recur. Presently we consider some kind of one hour, perhaps yearly review for those doing well. Call it phase three.

Maintenance in Treatment

Ultimately physicians drive and maintain treatment. A course structure, a website – these are ancillary. But the outcomes of the courses concern us: Do people stay in their diet plans, their fluid plans; do their tests get done; are they good? We do not have a real plan right now. But need one soon.

Integration of the Kidney Stone Prevention Course and This Site

As a writer of her own articles Jill teaches from what she put up on this site. She also uses whatever I or others have written that concerns fluids and diet. Because the site rests upon the peer reviewed literature so does the course material and what patients learn.

One might think people would want to read an article, on sodium for example, before that part of the course. But no; they usually prefer to hear the discussion and then read, if at all. We have not collected formal data on this point but it suggests something about use of a knowledge source vs. direct education by a teacher.

Why Do I Say ‘We’ When Jill Does All the Work?

Because the site and the kidney stone prevention course work together.

I propose this specific combination of a web based course and knowledge base might constitute a new paradigm fostering large scale stone prevention. Modern media, web based, support public, affordable, scalable education about that part of patient care that patients must themselves accomplish. In stone disease and maybe beyond we desire to innovate and get better care for patients. Doing it, and ultimately presenting the results – this is coarse grained, public, clinical experiment. Not perhaps real research. We have no control groups, and aim only at the good of patients. But we will observe and see how well the graduates do.

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Laura
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Laura

Any information regarding nutritional drinks for cancer patients?
My mother underwent treatment and diet is almost exclusively Boost Very High Calorie (problems with swallowing and dry mouth).
She developed calcium oxalate kidney stones this year.

M butensky
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M butensky

Any data on oxalate content and coconut milk

jill harris
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jill harris

Hi M Butensky,
We have no hard data, but I do have my patients eat and drink coconut products and their urinary oxalate remains lower than before they started the diet (and adding coconut products).
Best,
Jill

Lisa
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Lisa

Hello Dr. Coe, I recently passed my 2nd stone, (“several” 1-2 mm left in right kidney), composition: 6MM, 98% Calcium Oxalate Monohydrate, 2% Protein My first was, 4MM, 96% Calcium Ox, 2% Protein, 1% ea Calcium Phospate Carbonate/Hydroxyl My 24 hr urine comparison revealed, Urine volume up from 1.71 to 2.54 CaOx down from 7.42 to 4.99 Urine Sodium down 171 to 105 Calcium/Creatine 211 to 207 Not good: PH up from 6.0 to 6.1 Urine Calcium up 244 to 284 Protein .9 to 1.4 Phosphorus .826 to 1.085 Sulfate 30 to 55 Nitrogen 7.32 to 12.69 Calcium/kg 3.7 to… Read more »

Junafer
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Junafer

Hi, I’m in New York. My husband has kidney stones almost every year for about 30years. Last May 17,2018 he has left plank pain that relieves by Naproxen but the following day,he has a bloody urine, nausea and vomiting. So I brought him to Emergency of Mount Sinai Hospital about 6pm because of pain,bloody urine and vomiting. CT Scan done. found out a 4mm kidney stone.By 10:30pm he was discharged bec.he was relieve with pain medication. Sunday night May 20,2018 he felt really bad pain which I took him back to the Emergency.And his primary doctor told my husband stay… Read more »

Rosemary Howe
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Rosemary Howe

I’m in Australia. I’ve suffered extreme pain left side, left flank for 10 years. I had a specialist do work on my vagina though I had two easy births and felt I’d never experienced a prolapse. Another specialist booked me in to remove 1ft of my colon. I was sceptical. I lived with the pain for years until February 2018 when I ended up again in the Goulburn Base Hospital, Goulburn and saw a gastroenterologist who put me on a drip and ordered a CT scan. He discharged me the next morning in the same pain. The CT scan again… Read more »