Trustworthy Guidelines For Lyme Disease - Ilads

(Sept 21, 2015) — The Centers for Disease Control and Prevention (CDC) estimates that more than 300,000 new cases of Lyme disease occur annually in the US. ILADS guidelines, Evidence Assessments and Guideline Recommendations in Lyme disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease” bring the latest scientific evidence to bear on the management of the illness. ILADS is proud to announce their guidelines are now available on the National Guidelines Clearinghouse (NGC) website.

The National Guidelines Clearinghouse (NGC) is an initiative of the Agency for Healthcare Research and Quality (AHRQ), under the umbrella of the U.S. Department of Health and Human Services. The NGC recently adopted the Institute of Medicine (IOM) standards for developing trustworthy guidelines, which define the highest level of excellence that a guideline can achieve. Guidelines posted on the NGC website must now satisfy these standards. Thus, the inclusion of ILADS’s peer reviewed guidelines on the NGC website demonstrates that they meet the level of excellence called for by the IOM.  

ILADS is the first organization to issue guidelines on Lyme disease that were developed in accordance with the IOM standards. The document provides a detailed review of the pertinent medical literature and contains the first set recommendations for Lyme disease based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) process. This rigorous review format is also used by many other well-respected medical organizations including the World Health Organization (WHO), the American College of Physicians, and the National Institute for Health and Clinical Excellence (NICE) in the UK. ILADS guidelines are the only Lyme disease guidelines that included a patient from the Lyme community as an author or as a member of the guidelines development panel.

ILADS’ GRADE-based analyses found the evidence was of very low quality and regimens based on randomized controlled trials often failed. “For this reason, we moved away from designating a fixed duration for antibiotic therapy and instead encourage clinicians to tailor therapy based on the patient’s response,” noted Cameron, author and president of ILADS.

“We not only recommend that clinicians perform a deliberate and individualized assessment of the potential risks and benefits of various treatment options before making their initial selection, we also recommend careful follow-up because this allows them to adjust therapy as circumstances evolve.  This patient-centered approach should reduce the risk of chronic illness due to inadequate antibiotic therapy.” said Elizabeth Maloney, MD, a guidelines coauthor and provider of continuing medical education courses on tick-borne illnesses.

The guidelines include share medical decision making and take patient values into consideration. Lorraine Johnson, JD, MBA, a coauthor and Chief Executive Officer of LymeDisease.org, said “A lot of the treatment decisions in Lyme disease depend on trade-offs. How sick is the patient, how invasive is the treatment, what is valued by the patient? Patients need to understand the risks and benefits of treatment options to make informed medical choices. These guidelines provide that information.”

ILADS is a nonprofit, international, multidisciplinary medical society dedicated the appropriate diagnosis and treatment of Lyme and associated diseases. For more information, visit www.ILADS.org.
 

The above was from an E mail from ILADS 21st September 2015

ILADS GUIDELINES 

Lorraine Johnson explains on her blog Lyme Policy Wonk - https://www.lymedisease.org/lymepolicywonk-ilads-lyme-guidelines-on-national-clearinghouse/

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The best possible news for Lyme Disease patients around the World. This means that the outdated IDSA guidelines which are currently in the process of being updated are no longer the sole voice on treatment options for patients.

Although many doctors and patients have followed earlier guidelines from ILADS they were strongly criticized because they were not fully referenced and not peer reviewed. This is no longer the case with these new guidelines and so must now be considered when looking at helping patients. 

The UK guidance is over due to be revised, it was promised by PHE a couple of years ago but recently we have been informed that it will be a NICE process, thus putting completion off further to 2018. 

In 2013 the James Lind Alliance research found many uncertainties in guidance that is held on PHE website. The Dept of Health and PHE were involved in that James Lind Alliance process so are fully aware of the limitations of evidence to support the current guidance for the NHS. Failing to inform doctors of the limitations would appear to be negligent and has resulted in many patients being refused treatment based on PHE guidance.

As NICE develops new Guidance they must now also consider the ILADS Guidelines