May 2, 2013

New Therapy Checklist - 10 Answers You Need

On any given day, we patients progress through a common linear set of events, such as the following:
  • We go to the doctor with a problem - a new symptom, increased frequency or severity of an existing symptom, or even to manage an asymptomatic issue of which we were already aware.
  • Especially in the case of a chronic illness, we celebrate a possible treatment which may alleviate this problem.
  • Eager to improve our lives, we start down the treatment path prescribed (be it pharmaceutical, physical, or another type of therapy)...and quickly encounter a side effect.  Or perhaps we don't seem to experience relief, or maybe we do but this relief is incomplete or short-lived.
We're now faced with questions: Do I stop my treatment?  Is this normal and safe?  Is it normal but not safe?  Are there things I can do to make it more tolerable?  Does this mean it isn't working for me?

We have these questions because we didn't know what we were getting into.  Either we misunderstood what our doctors told us, or perhaps they never even told us many of these details to begin with.  The doctor's role isn't restricted to managing our illnesses, it also includes managing our expectations, and that clearly doesn't always happen.

Today while covering day one of the Patient Summit USA conference as part of the WEGO Health Press Corp, I listened to several presenters discuss critical aspects of the patient-provider relationship that impact how likely patients are to adhere to a course of treatment (especially medications).  In fact, "adherence" was the buzzword of the event.  From these conversations and drawing on my own observations as well feedback I've received from other patients, I was able to identify several key questions I believe a patient should ask about any treatment prescribed for them.  As was pointed out to me by Dr. Steven Feldman who gave the opening speech this morning (yes, a DOCTOR said this, not a patient advocate), the fault doesn't lie solely with the patient - the provider has an obligation to communicate with the patient and to do so effectively.  After all, if you say something but no one hears it, did you say anything at all?

So, in light of this argument that doctors should take a more proactive role in getting information out to patients even if they don't ask, I believe that, as always, it is ultimately on us to ensure we get the level of care we require.  This care and information need to be at a level we can understand if they are to be used to their utmost whether we get that by reading information sheets or asked questions of the provider during the visit.  And therefore I present to you not 10 Questions to Ask, but 10 Answers to Have about any course of treatment before leaving the office.

I feel like purchasing this post, found here, for a few physicians - and patients - that I know!
  1. What diagnosis does this treat?
  2. What symptom(s) does this treat?
  3. How does it work - what is the mechanism or process (i.e., stopping this from happening, increasing that, and so on)?
  4. How much improvement can I expect (full relief, partial recovery, etc.)?
  5. How long does it take to begin seeing a change in my symptom or condition?
  6. How long before the full extent of relieve I can expect should be realized?
  7. What are normal side effects which don't indicate a safety risk, and how can I cope with them?
  8. What are abnormal or particularly worrisome side effects which signal I should stop the treatment?
  9. Are there any other risks I need to consider, such as long term effects or interactions with other medications or supplements?
  10. Why do you think this is the best treatment for me at this time? OR I have some concerns I'd like to discuss first.  (Depending on how you feel about the treatment.)
I can't stress enough the importance that you don't just ask these questions, but that you really get answers.  Answers which MAKE SENSE TO YOU, at least to a reasonable extent.  YOU have to follow this course of treatment; YOU have to make decisions while on the treatment about hurdles that may arise; YOU have to live in the body that was affected by these decisions.  Here's an example of what I would consider reasonable answers for taking Plaquenil, a common maintenance drug prescribed for Sjogren's and related conditions.
  1. Plaquenil is being prescribed to treat Sjogren's Syndrome.
  2. This medication should help minimize overall inflammation and general disease activity such as brain fog and fatigue.
  3. Plaquenil helps reduce these symptoms by suppressing the autoimmune system so it won't attack healthy tissue as much.
  4. This course of treatment is meant to reduce existing symptoms that are due to highly active inflammation processes in the body as well as slow the progression of the disease going forward.  While possible, it is not likely that the patient will have complete relief from these symptoms.  The patient should expect to notice an overall more comfortable level of functioning with less fatigue and brain fog and fewer and/or less severe flares.
  5. Patients usually begin to notice improved symptoms in 3-4 months though not complete relief.
  6. It may take as long as 9 months to realize the full extent of the improvement so we usually ask patients to stay on the treatment at least this length of time if possible.
  7. Some patients have mild nausea when taking the pills, so patients may want to take them with a glass of milk.  Also, it is not uncommon to have unusual dreams while taking this medication but this side effect is not harmful to the patient.
  8. Patients may experience more concerning side effects.  If a patient become physically ill for 3 or more days after beginning the treatment, discontinue use and contact the prescribing physician.  If the patient has symptoms of a severe allergic reaction such as swelling of the throat, discontinue use and seek emergency medical assistance.
  9. Two primary long-term risks are associated with Plaquenil.  In some cases, patients taking this medication for a long time develop retinal toxicity which affects vision - therefore, we will have to get certain eye exams every 6 or 12 months to detect any build up before it affects your vision and can be reversed.  The other effect can be liver damage, so we will run common blood tests before every appointment to monitor for signs that it might be affecting your liver function.  We don't see these very often and both are reversible when caught early so we will stay on top of these tests.
  10. I believe this is a good treatment for you because you do not have many risk factors, the treatment has a strong history of success in long term disease management, is inexpensive under your insurance, and simple for you to use.  Other treatment options have lower success rates and more side effects, so I'd like to see if this works before trying those.
These really are basic pieces of information every patient should have about their own care.  We are not employees to be directed, we are customers hiring a doctor to provide a service - care and guidance.  Never lose sight of your own right - and obligation - to make the final decisions about your own health!

1 comment:

  1. Thank you for this informatiom. Very helpful
    to one who has been struggling for a few years.
    Thankful nothing severe until my 3 score and 10 years...


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