If you didn’t make it to the E-GAAPS conference, you missed a great opportunity for networking, sharing ideas, and improving your knowledge of guideline development, the importance of shared decision making, and many more topics. Below are a few highlights from this conference from our guideline committee chair, methodologist, and staff.

From our Guideline Committee Chair: I was in awe!

“This was the first guideline conference I attended and I was in awe of the talent and progression of societies in guideline development. I particularly was intrigued by the medical informatics and technology talks and will be discussing how to make our guidelines more compatible with clinical decision support. The energy and thoughtfulness of guideline developers within private health care systems was an inspiration along these lines. I see this as a logical approach to track adherence to our guideline recommendations.” 

From our Methodologist: Continual improvements to the GRADE tools and methodology.

“We’ve updated our process manual to be consistent with the IOM standards for guidelines and systematic reviews and modified the GRADE methodology for our evidence synthesis process. I was pleased to see that working groups are developing easy-to-use tools to make the process of GRADE more transparent. We also got some great ideas regarding performing pragmatic systematic reviews.”

From our Staff: Networking!

It’s great to see so many familiar faces at this conference and to make new acquaintances. I enjoyed conversations about AAN’s grant work in process, projects that are just about to publish, changes to development and dissemination methodologies, and new technologies on the horizon to aid in guideline development.” 

Finally, congratulations to the conference organizers and the planning committee. This first conference was a success and something I hope that will continue in future years. And thanks very much to New York Academy of Medicine for making their facility available; it was a spectacular venue. 

If you attended the conference, please share your key takeaways with our readers. And plan now to attend the 10^th Annual Guidelines International Conference in San Francisco in August. Bring your staff, your committee members, and your methodologists. We look forward to seeing you in there, if not sooner. 

I recently spoke with Richard M. Rosenfeld, MD, MPH, conference co-chair, chair of Guidelines International Network North America (G-I-N NA), and a G-I-N trustee, regarding the upcoming Evidence-Based Guidelines Affecting Policy, Practice and Stakeholders (E-GAAPS) conference in New York City on December 10–11, 2012.

TG: What prompted G-I-N NA to host this conference?

RR: We created this conference for the same reason G-I-N NA was formed: to help fulfill a pressing need for networking, communication, and exchange of best ideas and practices among individuals and organizations that develop, adapt, disseminate, and implement clinical practice guidelines.

TG: I notice there is a number of high-profile speakers and faculty for this two-day conference. How were these individuals selected?

RR: We began by forming a program committee representing the conference sponsors (G-I-N North America and the New York Academy of Medicine) and then added key individuals to represent additional stakeholders. We set the bar high and sought to identify and engage the best and brightest individuals in the field. The resulting speaker roster is literally a “who’s who” of luminaries in guidelines and related disciplines (e.g., media, communications, health policy, etc.).

TG: Who should attend this conference?

RR: Quite simply anyone who uses, adapts, develops, disseminates, or implements guidelines can benefit from the plenary sessions and numerous workshops. This includes not only clinicians, but also students, the public, consumers, the media, administrators, health policy makers, and staff from professional medical associations.

TG: Will there be opportunities for guideline developers to network or present information about their development and dissemination practices?

RR: Yes, we have set aside space for networking throughout the program. A primary objective of the G-I-N is to promote communication and networking, and this them is reflected the conference.

TG: What are G-I-N NA’s measures of success for this course?

RR: First, we would like to see spirited participation and exchange of ideas in the numerous workshop and breakout sessions that are a highlight of the program. Second, we would like to see increased interest and participation in G-I-N NA and the parent organization, G-I-N, to ensure that future events, webinars, and conferences best fulfill the needs of the North American guideline community. 

I hope to see you at the E-GAAPS conference on December 10–11 in New York City. Visit www.nyam.org/events/2012/evidence-based-guidelines-conference.html for more information on the meeting and registration.

We invite you to share your thoughts on a Medscape article¹ that asserts that a majority of guidelines fails to meet the Institute of Medicine (IOM) standards for development of systematic reviews (SRs)² and clinical practice guidelines (CPGs).³ Did any of you think your respective organizations would be further along in this transition than you are?

Here are some examples of the AAN’s progress to date on meeting the standards.

1. We updated our process manual in November 2011 to be consistent with the standards both for SRs and CPGs.

2. We established a grandfather period for all projects in process, allowing project teams 18 months to produce a guideline draft for review by the AAN Guideline Development Subcommittee (GDS). Now that the period has ended, the GDS will review the drafts from those project teams that produced a draft by the deadline, and will focus on developing IOM-compliant SRs and CPGs.

3. We drastically reduced the number of projects we have in process. At one time we had 70 guidelines in process; now we will be focused on developing four SRs and four CPGs, each of which will be IOM compliant.

What have you and your organizations done to attempt to meet the standards within your processes? Please share your thoughts within the comments.

¹Barclay L., Clinical Practice Guidelines Fail to Meet IOM Standards. Medscape. www.medscape.com/viewarticle/773099?src=nldne. Published October 22, 2012. Accessed October 22, 2012.

²Institute of Medicine of the National Academies. Finding What Works in Health Care: Standards for Systematic Reviews. www.iom.edu/Reports/2011/Finding-What-Works-in-Health-Care-Standards-for-Systematic-Reviews.aspx. Released March 23, 2011. Accessed March 23, 2011.

³Institute of Medicine of the National Academies. Clinical Practice Guidelines We Can Trust: Standards for Developing Trustworthy Clinical Practice Guidelines (CPGs). www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust.aspx. Released March 23, 2011. Accessed March 23, 2011.

It has been a year and a half since the Institute of Medicine (IOM) published its standards for development of systematic reviews (SRs)¹ and clinical practice guidelines (CPGs).² In that time, the American Academy of Neurology (AAN) has updated its process for developing SRs and CPGs in accordance with the IOM standards. To test this new process, we chose two guideline projects as pilot efforts: immunizations in multiple sclerosis (MS) and disorders of consciousness.

To enable public comment, we worked with our marketing team to put together a strategy to reach AAN members and the public. Here are some ideas we implemented:

·         Email to all AAN members

·         Email to the Neurology Now® group for patients with MS

·         Pitch to public relations teams of major patient advocacy organizations

·         Posting of information on the Facebook page of Neurology Now, the AAN’s publication for patients

·         Posting of information on the largest Facebook groups for patients with MS

·         Posting of links on the AAN Twitter channel (@AANPublic)

·         Posting of links on the Neurology Now Twitter channel (@NeurologyNow)

·         Posting on AAN Google+ pages

The AAN’s first public comment was for the immunization in MS protocol, the project plan draft for the guideline development effort. We posted the protocol on the AAN website in August for 30 days. We had 63 individuals review the protocol and provide comment. Of those reviewers, 10 were AAN members, and 53 were nonmembers. A total of 79 comments were made.

The disorders of consciousness protocol underwent public comment from September to October. We had 18 individuals review the protocol and comment. Of those reviewers, 8 were AAN members, and 10 were nonmembers. A total of 41 comments were made.

After completing two public comment periods, we have found that this process is more complicated than we originally envisioned. It is difficult to coordinate communications with all of the parties we would like to invite for document review. In spite of this challenge, we have found that most of the reviewers have provided valuable comments.

We are excited to be able to incorporate feedback from these stakeholders in our development process. We still have some kinks to work out, but we believe this process will make for a much better product.

¹Institute of Medicine of the National Academies. Finding What Works in Health Care: Standards for Systematic Reviews. www.iom.edu/Reports/2011/Finding-What-Works-in-Health-Care-Standards-for-Systematic-Reviews.aspx. Released March 23, 2011. Accessed March 23, 2011.

²Institute of Medicine of the National Academies. Clinical Practice Guidelines We Can Trust: Standards for Developing Trustworthy Clinical Practice Guidelines (CPGs). www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust.aspx. Released March 23, 2011. Accessed March 23, 2011.

New AAN Guideline Evaluates Bell Palsy Treatments

Read the new practice guideline

Oral steroids can improve the likelihood of full facial recovery in people with new-onset Bell palsy, according to “Evidence-based Guideline Update:  Steroids and Antivirals for Bell Palsy,” that was published electronically ahead of print on November 7, 2012, and appears in the November 27, 2012, issue of Neurology®. The efficacy of oral steroids is supported by well-designed, high-quality studies.

Efficacy of Antiviral Therapy Questionable

Antiviral therapy alone has not been shown in well-designed studies to increase the likelihood of full facial recovery. Physicians might offer antiviral drugs as an addition to oral steroid treatment, but they should inform their patients that a benefit from this drug combination has not been strongly demonstrated by well-designed studies. Patients also should be informed that if there is an added benefit of combination therapy even in severe cases, it will be marginal at best. 

Read the guideline and access PDF summaries for clinicians and patients, a slide presentation, and a clinical example. For more information, contact Julie Cox at jcox@aan.com or (612) 928-6069.

Usefulness of Test Depends on Clinician’s Judgment of Probability of sCJD Before Testing

Testing for 14-3-3 protein in spinal fluid may support the clinical diagnosis and other diagnostic tests used to diagnose sporadic Creutzfeldt-Jakob disease (sCJD) in patients who present with rapidly progressive dementia and are suspected of having sCJD. This is the primary finding in “Diagnostic Accuracy of CSF 14-3-3 Protein in Sporadic Creutzfeldt-Jakob Disease,” a new guideline from the AAN that was published electronically ahead of print on September 19, 2012, and appears in the October 2, 2012, print edition of Neurology^®. 

While the test may help when used in cases where doctors suspect sCJD may be present, the test is not accurate enough either to diagnose the disease or to rule out the disease with absolute certainty.

The usefulness of the 14-3-3 test will largely depend on a clinician’s judgment of the pretest probability of sCJD for a given patient. Such judgments will reasonably consider the rarity of sCJD (incidence 1 per million per year), the patient’s clinical presentation, and the results of already obtained ancillary tests such as brain MRI. However, how the test should be used in conjunction with EEG and MRI findings suggestive of sCJD needs further investigation. The authors contend that only physicians experienced in diagnosing dementia should determine whether the 14-3-3 protein test is needed and how results should be understood.

Read the guideline and access PDF summaries for clinicians and patients, a slide presentation, and a clinical example. For more information, contact Julie Cox at jcox@aan.com or (612) 928-6069.

What happens to a practice guideline after it is published? Does it live in obscurity in a journal back issue? Does it recede into the nether-regions of internet archives? With effective dissemination strategies, it is hoped, the answer to these questions will be no. In this first of several blog entries on guideline dissemination, I will explain why investment in dissemination is important. I also will describe the main components of a dissemination campaign and approaches to carrying out the steps needed for an effective guideline launch.

Practice guidelines—particularly those that are evidence based—are the result of years of rigorous effort from methodologists, clinician authors, and association staff. Yet practice guidelines frequently are dismissed or criticized as “cookbook” medicine.^1,2 So why invest so much effort? The reason is clear: the plethora and pace of medical research publications make maintaining knowledge of medical advances quite daunting. In fact, as Davidoff and colleagues (1995) argue, in order to keep up to speed clinicians would need to read 19 articles daily every day of the year.³ Contrast this with the limited time clinicians have available for such reading^4,5—less than an hour per week by some calculations⁴—and the need for guidance becomes clear. 

To address this need, AAN members and staff, with the enthusiastic backing of the AAN Board of Directors, decided in the mid-2000s to invest in guideline dissemination campaigns to increase awareness—with the goal that greater awareness would lead to widespread use of the guidelines.

It is difficult for us at the AAN to ascertain whether increased use of guidelines follows from increased awareness of them. However, we can point to evidence that AAN guidelines are frequently accessed and are held in high regard by our members and others:

·         Ninety-eight percent of AAN members are aware of and use AAN guidelines.⁶

·         AAN guidelines are one of the top three reasons AAN members access the AAN website.⁷

·         AAN guidelines have been cited thousands of times in other societies’ peer-reviewed journals.

·         Thousands of media sources, including both medical and nonmedical outlets, have reported on AAN guidelines.

·         Insurance companies regularly consult evidence-based guidelines developed by the AAN and other specialty societies as part of their process for developing coverage policies.⁸

How has the AAN achieved this profile as a guideline developer? Through targeted dissemination campaigns, including media releases for most efforts. Look for more on this in a future blog entry.

In upcoming installments on this topic, I will detail the main components of the AAN’s dissemination process, which are:

·         Assembling a dissemination panel

·         Identifying campaign goals and how to achieve them

·         Implementing the project plan

·         Measuring success

Stay tuned for more on the AAN’s dissemination process.

Julie Cox, MFA

Senior Program Manager, Clinical Practice Publications

1. Cabana M, Rand C, Powe N. Why don’t physicians follow clinical practice guidelines? A framework for improvement. JAMA 1999;282:1458–1465.

2. Salber P. Cookbook medicine saves lives. http://www.thedoctorweighsin.com/cookbook-medicine-saves-lives/. Published July 26, 2007. Accessed July 19, 2012.

3. Davidoff F, Haynes B, Sackett D, Smith R. Evidence based medicine: a new journal to help doctors identify the information they need. BMJ 1995;310:1085–1086.

4. Sackett DL, Rosenberg WM, Muir Gray JA, Haynes RB, Richardson WS. Evidence-based medicine: what it is and what it isn’t. BMJ 1996;312:71–72.

5. Neale T. Doctor's Orders: Practicing Evidence-Based Medicine Is a Challenge. Medpage Today. http://www.medpagetoday.com/PracticeManagement/PracticeManagement/17486. Published December 12 2009. Accessed July 19, 2012.

6. Practice Issues Survey Final Report [member needs assessment survey]. St. Paul, MN: American Academy of Neurology; January 9, 2009.

7. Result of end user interviews, stakeholder interviews and Google Analytics findings. Evantage User Experience Consultants, 2012.

G-I-N (Guidelines International Network) North America invites asks you to mark your calendar for Tuesday, June 26, 2012, for the next presentation in the G-I-N North America webinar series.  Thomas Getchius and Gary Gronseth, MD, FAAN, from the American Academy of Neurology, and Wiley Chan, MD, from Kaiser Permanente will be demonstrating examples of how technology can be used to facilitate the development of systematic reviews and clinical practice guidelines following 2011 Institute of Medicine (IOM) standards.

Please see below for more detailed information regarding this webinar. We hope you will attend!

Presenters:
Thomas Getchius, BA
Associate Director, Clinical Practice
American Academy of Neurology
Minneapolis, MN

Gary Gronseth, MD, FAAN
Professor of Neurology, University of Kansas
Kansas City, KS
Evidence-based Medicine Methodologist,
American Academy of Neurology
Minneapolis, MN

Wiley Chan, MD
Director, Guidelines & Evidence-based Medicine
Physician, Internal Medicine
NW Permanente
Portland, OR

Moderator:
Marguerite Koster, MA, MFT
Steering Group Chair, G-I-N North America
Practice Leader, Southern California Permanente Medical Group
Technology Assessment and Guidelines Unit

Learning Objectives
At the end of the call, attendees will:
1. Receive information about the American Academy of Neurology and Kaiser Permanente processes for developing systematic reviews (SRs) and clinical practice guidelines (CPGs)
2. Understand how the American Academy of Neurology and Kaiser Permanente uses various types of technology to strive to develop IOM compliant SRs and CPGs

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The AAN has published evidence-based recommendations for the treatment of infantile spasms that update a 2004 guideline. “Evidence-based Guideline Update: Medical Treatment of Infantile Spasms,” which was codeveloped with the Child Neurology Society, appears in the June 12, 2012, issue of Neurology®.

The guideline suggests that the therapy adrenocorticotropic hormone, also known as ACTH, and the antiepileptic drug vigabatrin (VGB) may be effective in the treatment of infantile spasms in children. A low-dose ACTH protocol can be as effective as higher doses and may lower the risk of adverse effects. ACTH may be more effective than VGB as short-term therapy. However, VGB has been shown to be possibly effective in patients with tuberous sclerosis complex. There is not enough evidence to know whether other therapies, alone or combined, are effective for short-term treatment.

The required evaluation includes an EEG for confirmation of the diagnosis.

“The studies point to early diagnosis and thus early intervention as possibly leading to better outcomes long-term,” said guideline lead author Cristina Go, MD, “and that, more specifically, early treatment with ACTH, prednisolone, or VGB may improve long-term cognitive outcomes. As for long-term developmental outcomes, however, hormonal therapy, either with ACTH or prednisolone, possibly outperforms VGB treatment.”

Read the guideline and access PDF summaries for clinicians and patients, a slide presentation, and a clinical example. For more information, contact Julie Cox at jcox@aan.com or (612) 928-6069.

Few People with Migraine Who Are Candidates for Preventive Treatments Use Them

The AAN has published two guidelines that show many pharmaceutical, anti-inflammatory (NSAIDs), and complementary treatments can help prevent migraine attacks in certain people. However, only a minority of people with migraine who are candidates for these preventive treatments actually use them. The guidelines, which were codeveloped by the American Headache Society, are published in the April 24, 2012, issue of Neurology®.

“The strongest evidence we found was for the pharmaceutical treatments divalproex sodium, sodium valproate, topiramate, metoprolol, propranolol, and timolol, and for frovatriptan for short-term menstrually associated migraine, as well as for the herbal preparation Petasites (butterbur),” said guideline author Stephen D. Silberstein, MD, FACP, FAHS, FAAN. “However, there were several other pharmaceutical and complementary treatments with evidence for use, and still others with evidence against use or with insufficient evidence to make a determination regarding efficacy.”

The frequency and severity of migraine attacks can be reduced with preventive treatments. Some studies show that migraine attacks can be reduced by more than half. However, epidemiologic studies suggest that migraine is a condition that is underrecognized and undertreated. “About 38 percent of people who suffer from migraine could benefit from preventive treatments, but only about less than half of these people currently use them,” said Silberstein.

Patients using pharmaceutical treatments or those using easily accessible complementary or over-the counter treatments may be unaware of the need for regular follow-up with their doctor, as migraines can worsen or improve, which may require adjusting dosages or changing to another drug.

Read the migraine guidelines and access PDF summaries for clinicians and patients, a slide presentation, and a clinical example. For more information, contact Julie Cox at jcox@aan.com or (612) 928-6069.