Archive for category The Proactive Patient
If your doctor says your kidneys are not working 100% … is that a problem? ABSOLUTELY! You need your kidneys in order to stay alive and when blood tests begin to show kidney problems it means you have lost a lot of kidney function already — at least 50%. So, the wise doctor and the informed patient need to run a checklist to do the right things. If you wait until you have symptoms of complete kidney failure, it’s too late.
The main blood test for kidney function is serum creatinine — abbreviated Cr. The kidneys have a large reserve capacity; in fact, a person can donate a kidney and still have the creatinine (Cr) blood test be “within normal limits”.
Many things can go wrong with the kidneys that range from the fairly simple to the terribly complex. For instance, kidneys can be damaged simply by the bad effects of high blood pressure or by esoteric autoimmune diseases (“friendly fire” where the body’s defense against germs is accidentally directed at healthy kidney tissue).
You need to know 4 things to estimate your kidney function:
- Serum Creatinine (Cr) as measured on a blood sample.
- Your age (in years)
- Your race (black or not-black)
- Your gender (male or female)
Then you calculate another number called eGFR (estimated glomelular filtration rate) based on the items 1 – 4. Often, this is automatically calculated by the lab — if not get the answer from many online web sites like the National Kidney Foundation eGFR calculator. The normal value is 100 but it’s not considered abnormal until it is below 90.
|STAGE||eGFR||DESCRIPTION||TREATMENT (also see tables below)|
|1||90+||Normal kidney function but urine findings or structural abnormalities or genetic traits point to kidney disease.||Observation, control of blood pressure.|
|2||60-89||Mildly reduced kidney function, and other findings (as for stage 1) point to kidney disease||Observation, control of blood pressure and risk factors.|
|Moderately reduced kidney function||Observation, control of blood pressure and risk factors.|
|4||15-29||Severely reduced kidney function||Planning for endstage renal failure.|
|5||below 15 or on dialysis||Very severe, or endstage kidney failure (sometimes called established renal failure)||Dialysis or transplant.|
Now to the checklist mentioned above (Clin J Am Soc Nephrol 9:1526-1535,2014.): All is well if you have no known kidney problems, the eGFR is above 90, the urinalysis (U/A) is normal, and you have no genetic predisposition to kidney disease (like a family history of polycystic kidney disease). Otherwise, you have stage 1-4 kidney disease so check off the items below to make sure important tests and treatments are obtained.
Slow the progression.
Find and treat complications.
|Check hemoglobin and Iron — keep in satisfactory range.|
|Check calcium, phosphate and PTH — keep in satisfactory range.|
Referral to nephrologist.
So, this seems complicated? TRUE. That is precisely why a checklist is needed. And, that is why the informed patient needs to go over this checklist with the primary care provider. Print a copy of this post and take it with you to an appointment to start the discussion.
The above prescription example comes from Medical School Headquarters intended as an example of what doctors should NOT do — that is to issue handwritten prescriptions. There are just so many possibilities for error mostly coming from illegibility. Also, errors from inadequate information provided to the pharmacist and the patient.
Electronic prescribing is unquestionably the best solution. Patients should choose prescribers who use computer software to send prescriptions to the pharmacy. In fact, prescribers who don’t use computers to do this are dinosaurs soon to be extinct — perhaps it would be a good time to leave that office practice and find something more modern.
You might think electronic prescribing solves all the problems, NOT SO. Just ask any patient taking a few medications on a regular basis! Here is what they say:
- My office appointments never match when prescriptions expire –so I either have to change appointment times or hope the office will renew the prescription early — always involves a phone call and wastes my time.
- I had no idea the doctor prescribed a brand name drug instead of a generic and I got hit with an unnecessary huge bill.
- The doctor has no idea how much medications cost.
- I need 90 day prescriptions for some things and 30 day prescriptions for other things but they can’t get it straight.
- My doctor’s computer system can’t send things to my mail order pharmacy
- I have to send prescriptions to my mail order pharmacy myself — usually they are the handwritten type and sometimes the pharmacy can’t read them.
- If my doctor issues a duplicate prescription so it will last until my next visit sometimes I get more medication (and cost) than I need.
- Often generic medications are less expensive if I purchase them without involving insurance — the pharmacist sure does not tell me that!
Here are some prescription suggestions for PATIENTS:
- ALWAYS take a list of prescriptions with you to health care appointments (or just take the bottles, but there is a risk of loosing expensive medications in the process).
- Your record should include the name of the medication (brand name if appropriate) and generic name
- Dose — that means the size (mg) of the pills and number taken, or amount of liquid (ml) or strength (%) of a cream or ointment
- How often taken and whether scheduled or as needed
- Why the medication is taken
- Number of doses of medication prescribed AND exactly how many days that covers (like 30 day supply)
- When that medication will expire and need refill
- The pharmacy phone number and FAX number (the latter is very important for mail order pharmacies)
- ASK if a new medication is generic and if not if a suitable generic is available. Or, if a suitable generic in the same drug family is available.
- ASK if the medication is short term or long term. If it is long term usually ask for 90 day supply with 3 refills (if insurance will approve). And, use mail order services advised by the insurance company since they are usually less expensive.
- BEFORE leaving the prescribers presence ask if the number of refills on a new prescription will last until next appointment? And, ask for an extension of refills for older prescriptions that will expire before the next scheduled visit (otherwise you get the fun of calling the nurse for refills)
- If a specialist prescribes a medication ASK if the specialist plans on long term follow-up and providing refills — if not what communication with primary care will convey the needed prescription information. But, if the specialist plans on managing the medication expect a full review of all medications to avoid duplicate prescribing and adverse drug interactions.
Here are some prescription suggestions for PRESCRIBERS:
- Consider the cost of medications — you can’t do that if you don’t find out how much they cost, especially the brand name drugs
- Prescribe the lowest cost alternative. Before prescribing a brand name drug ask if you are sure there is a real cost benefit over an older generic. If you don’t know, find out.
- Don’t prescribe antibiotics for viral infections
- Think about refills, don’t just write some arbitrary number. Make sure the patient has enough refills and will not have to call your nurse to get them. Contrary to popular belief patients do not like to go the the pharmacy — give 90 day prescriptions where possible.
- Have a patient Internet portal to deal with medication refill issues.
- Although it’s nice to compute the number of pills a patient will need it is sometimes better for insurance reasons to say the number of days of medication is needed ( 7 days, 90 days etc.)
- To avoid duplicate prescriptions when the patients prescription will not last until the next scheduled visit the following statement is helpful “extend existing active prescription so refills last until ____ “(e.g. a year from today). Sometimes: “stop refills on current active prescription. This is a replacement so note the changes.”
- Most mail-order pharmacies will take either electronic prescriptions or faxed prescriptions — it is not rocket science to get those numbers into the electronic prescribing system — make it happen.
Finally, sloppy prescribing causes patient injuries, provider law suits, extra time, and extra costs for both the patient and the prescriber. Electronic prescriptions are a step in the right direction but they are now mostly geared for pharmacists and not the real-world problems of patients. The integration of pharmacies within care delivery systems (e.g. an ACO) is an urgent need.
Nancy Morden MD MPH with others from the Dartmouth Institute for Health Policy and Clinical Practice published a nice “Perspective” in NEJM 3694;4:299-302. The essence of the article is the observation that published goals of treatment which don’t specify how to reach the goal lead to prescribers” jumping the gun” with strong expensive medications rather than a prudent step by step approach.
A good example from the article is controlling blood pressure. Guidelines state the desired blood pressure goal is less than 140/90. Prescribers tend to skip dietary management, skip lowering the salt intake, skip reducing alcohol consumption and jump right to strong blood pressure medications (with the attendant drug allergies, risks and costs).
Another criticism is stopping a medication too soon. The example is beta-blocker medication after a heart attack. It is not enough just to start the medication. The medication must be continued indefinitely. Too often the medication is stopped because the reason for starting it is forgotten.
Here are the areas the authors found problematic:
- Blood pressure control
- Cholesterol management
- Diabetes control
- Clot prevention for occlusive vascular disease
- Lipid control for coronary artery disease
- Long term beta-blocker after heart attack
- Avoidance of antibiotics for acute bronchitis
- Drug use generally in the elderly
From the patient standpoint: if a health care provider says you have some condition or diagnosis make sure to ask for a step-wise approach to treatment. In other words, ask for simple or less expensive things to be tried first. Then insist on follow-up to see if the first steps work. If the simple things work, you win. Make sure to research the diagnosis on the internet to exhaust the simple and low cost alternatives. Later, if the simple things are not enough move on to the next step.
There are obviously situations where a slow cautious approach is not correct. If you are having a heart attack or a stroke or a blood clot it’s too late to do simple things.
Make sure to understand how long a medication might be needed — if it is “until something better is found” then stick to it and make sure the providers give a good reason for stopping (particularly if you change providers).
You smoked 2 packs a day for 20 years. Your doctor orders the low-dose CT screening (above). Your doctor says you have a lung nodule, now what? That’s a lot to think about but before anxiety builds too much you need to know that of all the people with a nodule on their first scan 19 times out of 20 it is NOT lung cancer.
By asking some questions it is possible to work through the complicated logic of what to do next.
What if I am that unfortunate 1 out of 20?
If you know for sure the nodule is cancer you would get that nodule removed. Sure it’s a big surgery, hurts for weeks (sometimes longer), in the hospital for several days, and tons of risks the surgeon will recite. No walk in the park but the odds of a cure are better at an early stage. Lung cancer is a killer so it is easy to conclude: get rid of that nodule
What if that nodule is a bad type called “small cell” cancer?
Most specialists agree that chemotherapy is the treatment of choice. Surgery for small-cell cancer is not helpful and may actually shorten your life. A biopsy before surgery may help to avoid surgery for this type of cancer.
What if I am one of the lucky 19?
If all 19 get surgery there would be a lot of discomfort only to be told after surgery the nodule was just a scar or a harmless irritation. Biopsy or follow-up x-rays are sometimes helpful to avoid surgery.
What if I get a needle biopsy of the nodule?
A shot of numbing medicine, a long needle between the ribs, a tiny bit of tissue removed, and finally the pathologist sends a report. Such biopsies are 95% accurate. The wheel of fortune lands in one of 5 major categories:
- No cancer found
- Small-cell lung cancer
- Non-small-cell lung cancers
- Squamous cell carcinoma
- Large cell carcinoma
- Other cancers (much less common)
- Something which is not cancer
A needle biopsy answers critical questions. If it shows non-small-cell lung cancer surgery is the next step. If it is small-cell cancer the next step is chemotherapy. If it is something else, like tuberculosis, then entirely different treatment is needed. If it is “no cancer found” then you are back to square one — meaning a nodule is present and the cause is unknown (possibly a cancer that was missed by the needle).
I am willing to take some risk to avoid procedures.
We started this discussion with a 1 out of 20 chance of cancer. Is there some way to improve on the accuracy of that prediction? 1 out of 20 does not sound so good. But, if the odds of cancer in your situation are 1 out of 100 that would be more favorable.
Improved risk assessment
Canadian Annette M. Williams, MB and others reported in the New England Journal of Medicine in September 2013 an improved mathematical prediction method. Most pulmonary doctors and radiologists can readily provide the statistic. Basically, if the calculated risk score is below 5% then the chance of cancer is about 1 out of 100 .
If the risk is low you might just choose to get a CT scan every few months. If the size of the nodule does not change for 2 years then it is harmless. One sure thing, cancers grow. No growth means no cancer. But, if the nodule does grow you could change the plan and get the biopsy or surgery — there is a risk to letting a cancer grow for a few months (it could spread) but there are risks to biopsies and surgery as well.
If the cancer risk is high you might want to go ahead with a biopsy.
The above are the outlines of nodules 1) round 2) lobulated 3) irregular and 4) spiculated. Cancerous nodules can take any shape but tend toward the spiculated (spiny) form.
The improved statistical method is based on a few details about the nodule. Sex (women are more likely to have malignant nodules), size (the larger the nodule the more likely it is malignant), location (upper lobe nodules are more likely malignant) and spiculation (see diagrams).
If you want to calculate the risk statistic yourself, have a calculator and know the details listed above then click this: Calculate Risk. But, be warned, this calculation only applies to people who have a risk for cancer to begin with, not the incidental nodule found in a lifetime non-smoker or someone who only smoked a few years.
The forgoing material is intended as education, not a substitute for the evaluation and advice of your health care provider. If it seems helpful print it and take it to your provider for discussion. Medical care changes with time so always get up to date information.
On 7/23/13 Laura Landro of the Wall Street Journal published an article about “A Better Digital Diagnosis”. The essence of the story is on-line symptom checkers are available and may be useful to patients. Just input your symptoms, get your diagnosis, call for an appointment, and get your treatment. Sounds good; possibly too good.
Below are listed some good sources for information, some symptom checkers and some software to download to a smart phone. The software is actually intended for health care providers and may have too much jargon for the average person.
However, before you jump in to get a diagnosis for what ails you try a test run. OK, this is not a double blind experiment but worth your time. The idea is to look up the details of a known disease then enter the published symptoms in the symptom checker and see what comes out. You will find a huge variation, often the expected diagnosis does not even show up at all!
For example: plantar faciitis. This is a common disease of the foot caused by inflammation of the connective tissue in the sole of the foot especially causing pain just in front of the heel bone. The striking and often diagnostic symptom is heel pain on first getting out of bed and walking. The pain gets better after a few minutes of walking. It is common in runners and people who spend lots of time standing. Being overweight or wearing hard-sole shoes contributes. As people get older the natural padding of the sole thins which is probably why the problem is common after age 50.
The symptoms were entered into several of the symptom checkers. Esagil seemed to give every diagnosis know to medical science and nothing would narrow down the possibilities — every symptom could be due to syphilis. The Mayo Clinic site required some human thinking. Foot pain showed several areas to read about: after reading the material the diagnosis of plantar faciitis seems to fit.
The diagnosis of plantar faciitis can usually be made by a primary care provider in a flash — it is a common problem. Worrying about whether you have syphilis is a waste of time and a real source of anxiety — if you ask the primary care provider whether you could have syphilis, you can almost count on some testing.
Once you have tested any symptom-checker and understand the limitations they can be helpful. It’s almost like a second opinion about a problem. Discuss the findings with the health care provider early in an office visit — don’t spring the information after the provider makes a plan. Be a team player to prevent being at odds with the provider.
Good sources for medical information:
Evaluate symptoms / differential diagnosis
Smart Phone Apps
- Differential Daignosis by mHealth Labs, LLC
- Differential Diagmosis by Borm Bruckmeier Publishing LLC
- Your Rapid Diagnosis for Android by WWW Machealth
- Differential Diagnosis from the BMJ Group
- Your Rapid Diagnosis by WWW Machealth
- VisualDx by Logical Images
- Common Symptom Guide by Mobile Systems:
The physician who does not carry a smart phone to look up drug side effects is a dinosaur soon to be extinct.
Drug side effects can be common, rare, severe or mild. But, the number of reported drug side effects is so large the human brain can not remember them all. When a patient has a symptom or abnormal lab finding it is imperative to answer the question “could it be the medication?” An additional step is to check for drug interactions between all the medications a patient takes — easy on a smart phone or computer.
Prescribers may recall the side effects that were listed when a drug first went on the market — but quietly pharmaceutical companies discover more side effects which are later added to the product literature in fine print.
Here are some real life examples:
- A patient who takes several blood pressure medications is hospitalized with another episode of abdominal pain due to pancreatitis. $10,000 worth of tests find no cause. The patient is sent home and told it must have been due to a gall stone that passed undetected. WRONG — it was due to the side effects of the blood pressure medications. Medications changed, problem solved.
- A patient takes a new oral anticoagulant and needs a heart procedure. The blood test shows a low platelet count. $10,000 worth of tests give no clue. A bone marrow biopsy is proposed. WRONG –The patient finds an internet site shows the new drug may cause a low platelet count. No bone marrow test is needed. Medication changed, problem solved.
- A patient gets sunburned easily and friends comment on a suntan even in the winter. The medical diagnosis: fair skin. WRONG — the blood pressure medication causes photosensitivity. Medication changed, problem solved.
No matter whether the drug side effect is rare or common, if it happens to you it is 100%. Pharmaceutical companies rate the frequency of certain side effects. Indeed, this is helpful to health care providers — they figure out a diagnosis by mentally sifting through possibilities based on likelihood. Right lower abdominal pain is most likely appendicitis but surgeons well know there are other causes.
From a patient standpoint sometimes it is enough just to know that a drug could possibly be the cause of symptoms. If those symptoms start right after a drug was prescribed it does not take a rocket surgeon to figure out the problem.
Drug side effects are not behind every symptom. Such thinking could be very dangerous. To hesitate to see a doctor about chest pain because it could just be a drug side effect would be crazy. Also, there are unavoidable side effects — you might not like the side effects of a medication but sometimes there is no alternative (like medications to prevent organ transplant rejection).
The proactive patient should always check for possible side effects of their medications and discuss the findings that match symptoms with a health care provider. Just searching the drug name and “side effects” almost always gets the list you need. Another source is patient reported side effects. Several web sites are available — this one is sometimes helpful eHealth.me
Denver Colorado is a metropolitan area with several hospitals so the city serves as good example of the dilemma people face to make a choice.
The Denver Metro area is lucky to have good hospitals. But, the experience one might have as an inpatient depends on many factors including the individual doctors, the nurses and the strength of the quality improvement program at each hospital. The Center for Medicare and Medicaid Services (CMS) sets quality targets for participating hospitals and measures how those hospitals perform. CMS publishes the data and several organizations extract the data and make them available online. One such site is WhyNotTheBest.org by the Commonwealth Fund.
Hospitals tend to emphasize heart care because it is profitable and it has a strong emotional appeal. However, the average consumer never really knows what will land them in the hospital. CMS provides many different hospital quality statistics but the “overall” statistic is actually the most helpful to consumers.
Quality can be measured by an “outcome” such as mortality. Or, quality can be measured by adherence to a “process” . Process measures are popular because they don’t depend on patient factors such as age or poverty.
For example, leaving home in the morning should include the process of putting on shoes and closing the door. Following that process does not guarantee a good outcome but lessens the possibility of humiliation at work or later finding a burglar in your home. Hospital process measures reflect the quality of management and the ability of an organization to execute a plan with numerous players.
The following table is CMS data organized by WhyNotTheBest.org. The “Overall” is a weighted average of all of the process-of-care, or “core” measures.
NAME — Selected Denver Hospitals
|University Of Colorado Hospital Anschutz Inpatient (CO)||99.38%||162 of 1792|
|Swedish Medical Center (CO)||99.17%||265 of 1792|
|Presbyterian/st Luke’s Medical Center (CO)||98.76%||460 of 1792|
|Exempla Lutheran Medical Center (CO)||98.59%||551 of 1792|
|Exempla Saint Joseph Hospital (CO)||98.33%||698 of 1792|
|Denver Health Medical Center (CO)||97.56%||1093 of 1792|
|Centura Health-st Anthony Central Hospital (CO)||95.62%||1619 of 1792|
Hospitals love the percentage statistic and hate the national ranking. There are hospitals in other states that indeed do score 100%. Just like climbing a Colorado mountain, the last mile is often the hardest.
99.38% or 95.62% means the hospital failed to follow a process 6 or 44 times out of 1000. One time out of a million would be better. Which hospital you choose may depend on where your doctor or insurance company sends you. But, if you have a choice the information from CMS may be helpful.