Press Releases, and summaries, of key LymeResearchUK reports and articles.
Policy and practice in the UK and beyond (Summary)
The policy on assessing patients for Lyme disease, including clinical risk assessment, testing and diagnostic clinical assessment, through to treatment and follow up, appears to have changed little in the UK or Ireland over the last decade. In addition, there seems (with the exception of certain ‘alternative’ guidelines) to be little variation in the content of policy or guidelines, for dealing with Lyme disease in Europe or beyond. A timeline of key policy and other guidance (and responses to policy) relevant to the UK and beyond is provided below in Table 1.
In addition to managing a regionally based local protection service, the HPA also had a role (from 2003) in the provision of a Lyme testing ‘reference’ laboratory, providing advice to clinicians. A similar situation exists for Ireland and Scotland, except that half of Scotland (the east and highlands) had their own reference laboratory (based in Inverness) using in-house testing kits.
In Ireland, the approach to dealing with Lyme may not be dissimilar to the UK (i.e. England, Wales, Northern Ireland and Scotland). The equivalent of the HPA, the HSE, references IDSA’s and the British Infection Association’s guide on Lyme disease, for instance.
The HPA, in 2010, initiated a review of ILADS guidance from 2004 (International Lyme and Associated Diseases Society Evidence based guidelines for the management of Lyme disease), a key milestone in the UK. ILADS are a group based in the United States, known to advocate a different approach to dealing with Lyme disease and have had support from patient groups and some doctors, worldwide. Clinicians in Europe have developed other guidance that provides a different view such as that from the German Borreliosis organisation (Deutsche Borreliose-Gesellschaft, 2nd edition 2010).
Established policy approaches, and accepted established practices, are being challenged by specific stakeholder groups; patients’ movements etc. Key documents and events related to these dynamics are outlined below. This summary provides an overview of this complex set of policy issues.
|Date||Title document/ source information/ author||Purpose/context etc.|
|European Union Concerted Action on Risk Assessment in Lyme Borreliosis (EUCALB)||1996||O’Connell S (Eurosurveillance 1996); Stanek G, O’Connell S et al, 1996, European Union Concerted Action on Risk Assessment in Lyme Borreliosis: clinical case definitions for Lyme Borreliosis. Wiener Klinische Wochenschrift (Vol. 108, pp. 741-747)||European Case Definitions – A network of clinicians and scientists throughout Europe – programmes to formulate case definitions appropriate for European use and to standardise the quality of laboratory diagnostic tests for Lyme disease|
|Health Protection Agency
|Set up 2003||HPA Act 2004; Chief Medical Officer, ‘Getting Ahead of the Curve’ (2002)||Operational and strategic role with a corporate remit of ‘Protecting People, Preventing Harm, Preparing for Threats’ with a focus on ‘new and emerging infections’. CMO report on strategic planning to deal with infectious disease in the environment.|
|European Society of Clinical Microbiology and Infectious Diseases||2004||Brouqui, et al (2004)||Latest (general) European guidance published|
|Health Protection Agency||Set up 2003/ HPA Act 2004 – 2012||Website, and links to IDSA[i]||Provides advice and information to professionals (and the public) about Lyme disease testing, diagnosis and treatment. For the UK (i.e England, Scotland and Wales). (April 2013 onwards part of Public Health England)|
|ILADS – The International Lyme and Associated Diseases Society||2004 and 2008||First version 2004, Latest version guidance – Burascano, J (2008) (16th edition). Advanced topics in Lyme Disease Diagnostic Hints and Treatment Guidelines for Lyme and other Tick-borne illnesses||ILADS is a non-profit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases in America|
|IDSA – Infectious Diseases Society of America
|2000 and 2006||First version 2000, Latest version: IDSA, 2006, The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America, Gary P. Wormser, et al, Clin Infect Dis. 43 (9): 1089-1134. doi: 10.1086/508667||IDSA undertook a review of it’s own guidelines, Lantos et al (2010). Final report of the Lyme disease review panel of the Infectious Diseases Society of America. Clinical infectious diseases: an official publication of the Infectious Diseases Society of America, 51(1), 1–5.|
|Southampton reference laboratory, directed by Dr Sue O’Connell||2003 onwards||Poster presentation: ‘Recommendations for diagnosis and treatment of Lyme borreliosis: guidelines and consensus papers from specialist societies and expert groups in Europe and North America’, unpublished; various publications in peer reviewed journals||Concluded that other European countries have independently agreed similar guidance to that provided by IDSA, linking to internationally agreed standards in the use and interpretation of ‘two tier’ testing|
|European guidance on neuroborreliosis||2010||Mygland et al 2010. Published in peer-reviewed journal.||Newer guidance on the neurological versions of the condition, for Europe|
|Requested by CEO of HPA –working group set up means||2010||Professor B Duerden: Independent Appraisal and Review of ILADS 2004 ‘Evidence-based guidelines for the management of Lyme disease’.||Concluded this was not ‘evidence-based’, that relying on it would lead to ‘over–diagnosis’ of Lyme disease, and that using it could harm patients and/or lead to patients ‘losing the opportunity for diagnosis and treatment for other conditions’|
|British Infection Society||2011||The epidemiology, prevention, investigation and treatment of Lyme borreliosis in United Kingdom patients: A position statement by the British Infection Association, Journal of Infection, Volume 62, Issue 5 , Pages 329-338, May 2011||Professional association representing different groups related to dealing with infections. Accepted as ‘new’ guidance by the HPA from 2011. Position statement. Very similar to IDSA guide which is referenced.|
|Lyme Disease Action (UK)
|June 2011||Lyme Disease Action. (2011). Comment on the British Infection Association’s Position Statement on Lyme borreliosis June 2011. First issued to the BIA 14/ 6/ 2011. Journal of Infection, 5(5).||Comment on the British Infection Association’s Position Statement on Lyme borreliosis -Response to BIA guide|
|James Lind Alliance project||2012 onwards||Set up and paid for initially by Lyme Disease Action, a UK charity.[ii]||HPA and DOH, are involved in examining ‘known uncertainties’ with respect to diagnosis (and treatment) for Lyme disease. The project outcomes are expected to include potential funding of research based on a review of ‘uncertainties’, and a ‘priority setting’ process, that includes clinicians, patients, and the charity.|
|Rare and Imported Pathogens Laboratory (RIPL)||2012 (1/6/2012)||No published or publically available documents (to date).
|Provide clinical advice to clinicians, on Lyme testing and results, and has a work programme. This includes developing new advice to doctors, reviewing testing, etc.|