Acromegaly guidelines: How useful are they?

 From Lewis S. Blevins, Jr. MD  –  Every few years, one organization or another releases “guidelines” and “recommendations” regarding the management of patients with acromegaly. These often include algorithms provided by an “acromegaly consensus group” to lead treating physicians and patients through the landscape of treatment. I am firmly opposed to the recurrent potential complications and recommended application of such guidelines and will address those issues.

I will say it is my belief that patients deserve individualized care that is based on the medical evidence that also incorporates the art of medicine.

Any physician can learn to deliver evidence-based medical care. But frankly, it takes an experienced physician to practice the art of medicine and to learn to incorporate data from the medical literature. Furthermore, patients should be encouraged to participate in decisions regarding their care. Additionally, I feel patients deserve the very best health care team with extensive clinical experience and center available to meet their needs.

My concerns about the guidelines and algorithms proposed to treat acromegaly are numerous. I am concerned that the guidelines propose treatment of the population of persons with the disease and not individual patients who deserve individualized care. The guidelines are often based on clinical trial results which do not often apply to routine practice. They do not consider the individual caveats of the different therapies. Unfortunately, the reported efficacy of drugs used in the management of acromegaly has not always been transparent, and those erroneous research results are often used to devise the guidelines. Furthermore, the guidelines are biased by those who author them, the companies that sponsor them, and the very authors who propose them. Lastly, guidelines may lead to third party payor mandates and ramifications that directly affect patients. They do not take into consideration the potential medico-legal ramifications that may result if a physician does not follow the proposed guidelines, and instead prescribes an individualized approach to treatment.

In essence, the guidelines might be useful for physicians who have no idea how to manage acromegaly. But, why would patients want to see those physicians in the first place? Wouldn’t it be best to see a physician who didn’t require guidelines to devise an appropriate treatment plan?

Each of the guidelines has used a rating scheme to determine the strength of medical evidence gleaned from a review of the literature. A panel of experts, whom often have no consensus whatsoever, then devise an executive summary of recommendations. To illustrate the potential bias that exists in the development of these recommendations, I will relate that four of the six members involved in generating the AACE recommendations in 2011 received support from pharmaceutical companies invested in the treatment of acromegaly. Two of three of the reviewers of the finalized recommendations received support from the pharmaceutical industry and one now works for one of the companies that produces a drug to treat acromegaly!

Some of the recommendations are rather pedantic and simply waste paper. For example, the AACE guidelines published in 2011 states that visual field testing should be performed if there is optic chiasmal compression noted on the MRI, or if the patient has complaints of reduced peripheral vision. Everyone knows that! It is pointless to include this information and other basic medical school level recommendations for disease management in a periodical devised to guide the management of patients with a particularly rare disease. My point is that patient’s should be in the care of experts who do not need to be reminded of such elementary recommendations.

Fortunately, the acromegaly consensus group recommendations published in 2009 did suggest that expertise in surgical management is very important in the control of the disease process and recommended that surgery be performed by dedicated an experienced pituitary neurosurgeon conducting at least 50 pituitary operations per year.

There are, however, a few useful recommendations that I would like to relate to our readership so that, in particular, affected patients can be better informed and prepared to interact with their physicians when devising a treatment plan.

To summarize:

  • It is important to maintain the same growth hormone and IGF-1 assays throughout the course of management
  • Routine preoperative medical therapy in attempt to improve surgical outcomes is not recommended
  • Preoperative treatment with somatostatin analogs might be appropriate for patients with severe sleep apnea and cardiomyopathy to help prepare these patients for surgery
  • In contrast to prior recommendations suggesting the use of a somatostatin analog as first-line medical management, the consensus group recommendations published in 2014 state that either a somatostatin analog or Pegvisomant may be used for patients with moderate to severe residual or recurrent disease
  • Dopamine agonist drugs may be considered as first-line medical therapy in some patients and, in particular, elderly patients with mild residual or recurrent disease and especially those who have tumors and also secrete prolactin
  • Radiotherapy should be considered as an adjunctive treatment in patients not fully responding to surgical or medical treatments (or both)
  • Decisions regarding medical management of acromegaly should be made based on IGF-1 levels measured 12 weeks after surgery.   A normal IGF-1 level usually indicates a successful resection of growth hormone producing pituitary tumor. The random growth hormone level should be less than 1 ng/mL after surgery.   When either one of these two goals are not achieved, an oral glucose suppression test may also be useful to confirm those patients with mild residual or recurrent disease. A normal growth hormone response to oral glucose is less than 0.4 ng/mL during the test.

Factors that I consider in managing patients with acromegaly, which the guidelines clearly omit, include age of the patient, the overall health of the patient, the education and understanding of the patient and support system, their willingness to accept side effects, their inability/ability to accept, implement, and monitor treatment, the tumor size and character, the prior treatment history, disease comorbidities, and financial constraints.   In my opinion, it is only through individualizing care for each patient with Acromegaly that the population of patients with the disorder will be controlled.

© 2015, Pituitary World News. All rights reserved.

2 COMMENTS

  1. Hi Drs.

    As One with Acromegaly going on several decades to date, is there any medical replacement for low Cortisol Yet?
    Mine is very low and yes as I age it’s not so fun having such low Cortisol Levels!
    My Dr. Was Dr. Ridgeway (RIP SIR), University Hospital Denver and he couldn’t find one—so I am curious if there is one available yet!

    Thank You for your Time,
    Randi Levin

  2. While I agree somewhat with Dr. Blevins assessments, lets not throw the baby out with the bathwater.
    Several points to consider in this matter. 1) “Wouldn’t it be best to see a physician who didn’t require guidelines to devise an appropriate treatment plan?”…believe it or not Dr. Blevins, there are “medical knowledge deserts” out there when it comes to getting diagnosed or treatments. I live in Memphis, TN, 8 miles from the UT Medical College and Research Center. When I asked their Endocrinology Group there for any recommendations for an Endo in Memphis with Acro experience….I was basically told I should go to Vanderbilt in Nashville. Unfortunately, not many of us Acro burdened folks live in close proximity to major medical research centers with experienced doctors to call on and more often than not, we find that we are the only Acro patient our Endo will ever see. Welcome to the world of the conjoined learning curve.

    2) While I think some consensus groups have some merit, I wonder just how many of them actually have any first hand experienced member (Acro patients) as members. It reminds me of the guy who loves to look at the expanse of the universe through his big expensive telescope trying to direct the Engineers on how to build the Space Shuttle.

    I agree Dr. Blevins we don’t need more grocery store check off list…each case is different and has to be confronted on the merits of each individual patients’ presentations. The key is finding a medical professional who even recognizes and can connect all the dots. I have battled this condition for 19 years, I will the rest of my life. While I’m grateful for the improvements I’ve seen and experienced over that last 19 years, from a patient’s perspective there is room for a lot of improvement…maybe not some algorithm check list…..just maybe all that’s really needed is the general guidelines that there is no cut and dry with this beast in symptoms or treatment, so Doctors, know your patient, see them and listen to them as the human being they are, they’re living this nightmare 24/7/365….and trust me, they’re better than any algorithm.

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