Los Angeles, CA (PRWEB) August 05, 2014
Too many patients fail the standard treatments for early Lyme disease. Today LymeDisease.org, a leading national patient advocacy nonprofit, endorsed new guidelines published by the International Lyme and Associated Diseases Society (ILADS). LymeDisease.org Executive Director Lorraine Johnson, JD, MBA, was an author and patient member of the ILADS guidelines panel. “The guidelines are both evidence-based and patient-centered,” Johnson said.
The full guidelines, “Evidence Assessments and Guideline Recommendations in Lyme disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease” were published online today in the August 2014 issue of Expert Review of Anti-infective therapy and are available free access.
The Centers for Disease Control and Prevention (CDC) estimates that more than 300,000 people contract Lyme disease each year. People with Lyme and related tickborne diseases frequently experience long delays in obtaining an initial diagnosis, have poor access to healthcare and suffer a severe burden of illness. Those who are not diagnosed early have a worse prognosis; many become chronically ill.
Focusing on how best to reduce the risk of developing chronic illness, the new ILADS Lyme guidelines target how to treat tick bites, Lyme rashes and persistent disease. Johnson noted that because the evidence base is poor, there is a strong need for clinical judgment and shared decision-making with patients: “Many of the treatment decisions in Lyme disease depend on trade-offs. To make informed medical choices patients need to understand the risks and benefits of treatment options. These guidelines provide that information,” Johnson said.
The ILADS Lyme guidelines were developed over a three-year period and reflect the latest science. They are the first Lyme guidelines to use a rigorous systematic evidence evaluation approach called GRADE (Grading of Recommendations Assessment, Development, and Evaluation). GRADE has been adopted by other prominent medical organizations including Cochrane Collaboration, the World Health Organization, and the National Institutes of Health. The ILADS guidelines also reflect the high standards established by the Institute of Medicine for developing trustworthy guidelines and were reviewed by over 25 reviewers.
The complexity of Lyme disease makes a “cookie cutter” approach inappropriate, noted Dr. Dan Cameron, MD, MPH, lead author: “We moved away from designating a fixed duration for antibiotic therapy and instead encourage clinicians to tailor therapy based on the patient’s response to treatment.”
Coauthor Elizabeth Maloney, MD, commented on the need for clinicians to perform a deliberate and individualized assessment of the potential risks and benefits of various treatment options before making their initial selection: “We recommend careful follow-up because it allows patients to adjust therapy as circumstances evolve. This more selective approach should reduce the risk of inadequate treatment giving rise to a chronic illness.”
LymeDisease.org (LDo) is a non-profit 501(c)(3) that serves the patient community through advocacy, education and research. For further information, visit lymedisease.org. Lorraine Johnson, JD, MBA is the Executive Director of LymeDisease.org. She is the Co-Chair of Consumers United for Evidence-Based Healthcare, a national coalition of 40 patient groups. She is a patient representative for the government funding agency, Patient Centered Outcomes Research Institute.
ILADS is a nonprofit, international, multidisciplinary medical society dedicated to the appropriate diagnosis and treatment of Lyme and associated tickborne diseases.
Reference: Cameron et al, Evidence assessments and guideline recommendations in Lyme disease: The clinical management of known tick bites, erythema migrans rashes and persistent disease. ERAIT 2014.
For more information, visit LymeDisease.org.