NATIONAL HEART, LUNG, AND BLOOD INSTITUTE
NATIONAL CENTER ON SLEEP DISORDERS RESEARCH
Sleep Disorders Research Advisory Board
Education Subcommittee
Meeting Summary
September 29, 1998
ADVISORY BOARD MEMBERS PRESENT
Dr. Richard Millman (Chair, Education Subcommittee)
Ms. Sue Rogus (Coordinator, Sleep Education Activities)
Dr. James Kiley (Director, NCSDR)
Ms. Ellen Sommer (Sleep Mass Media Specialist)
Dr. Jesse Blatt
Dr. F.J. Brinley
Dr. James Everett
Dr. Harold Gordon
Dr. Robert Greene
Ms. Victoria Haulcy
Ms. Carla Kidd
Dr. Carol Landis
Dr. Emmanuel Mignot
Dr. Eugene Schwartz
Dr. Fred Turek
Ms. Carol Walker
Dr. David White
ORGANIZATION REPRESENTATIVES PRESENT
American Sleep Apnea Association
Ms. Christin Engelhardt
American Sleep Disorders Association
Ms. Sarah Myren
American Thoracic Society
Dr. Robert Basner
Association of Polysomnographic Technologists
Ms. Pamela Minkley
National Sleep Foundation
Mr. Darrel Drobnich
Restless Legs Syndrome Foundation, Inc.
Ms. Cate Murray
Sleep Disorders Dental Society
Dr. Arthur Strauss
Sleep Disorders Movements, Inc.
Ms. Darlene Sanders
U.S. Department of Transportation
Dr. Pamela Anikeeff
OTHERS PRESENT
Mr. Bob Balkam, RLS Foundation
Ms. Pat Britz, National Sleep Foundation
Ms. Mary Lawrence, NCSDR
Mr. James Perlstrom, Greater Washington Sleep Disorders Center
Ms. Debra Pfanschmidt, RLS Foundation
Ms. Sharon Ricks, National Heart, Lung, and Blood Institute
Ms. Sue Shero, R.O.W. Sciences, Inc.
WELCOME [Dr. Richard Millman and Dr. James Kiley]
Dr. Millman welcomed participants to the meeting and asked board members and organization representatives to briefly introduce themselves. Dr. Kiley announced that new board members will be introduced at the Advisory Board meeting. He apologized for this meeting's coinciding with the Yom Kippur holiday and assured members that close attention will be paid to future meeting dates. Dr. Kiley called members' attention to tab 8 of their briefing book, which contains the executive summary of an Institute of Medicine report about priority setting at the National Institutes of Health. He recommended that members review the report, since it details the importance of public input in setting priorities. Dr. Kiley stated that the report is particularly relevant to this group and that, as always, input from the various organizations is welcome. The full report can be found on the Web.
ACTIVITIES UPDATE [Ms. Sue Rogus]
Ms. Rogus recapped the problem sleepiness project. Three publications are now available, both as a hard copy and on the NHLBI Web site:
- "Working Group Report on Problem Sleepiness";
- "Facts About Problem Sleepiness"; and
- "Problem Sleepiness in Your Patient."
The latter report was accepted by American Family Physician for publication and was distributed to approximately 27,000 family practice physicians with the support of the American Sleep Disorders Association (ASDA). A joint letter from Dr. Lenfant, director of the NHLBI, and Dr. Schmidt-Nowara, then-president of the ASDA, accompanied the report.
The insomnia project focused on educating primary care physicians about the recognition and management of insomnia. The ASDA, which provided support for the working group meetings held last year, will support the dissemination of "Insomnia: Assessment and Management in Primary Care." This report is currently at the printer, and members will receive a final copy of the publication when it is available. The report will also be posted on the NHLBI Web site. Ms. Rogus reported that "Insomnia: Assessment and Management in Primary Care" has also been submitted to American Family Physician, and it is currently undergoing review.
Collaborative activities with the National Highway Traffic Safety Administration (NHTSA) are ongoing. An expert panel met last year to examine the issue of driver fatigue and inattention. The expert panel report is available on the NHLBI and NHTSA Web sites. [A copy of the report was included in members' briefing books.] The steering committee of the expert panel continues to be involved in educational activities.
As part of a project to educate youth about sleep and drowsy driving, a four-page color insert was developed in conjunction with Scholastic, Inc. for distribution to high school students and teachers. [Members received a copy of the insert in their briefing book.] Teacher inserts were also developed and distributed in May. These materials will also be prepared for the Web.
The Strategy Development Workshop on Educating Youth About Sleep and Drowsy Driving was held in June. The report from that workshop has just completed Institute clearance. Members received a copy of the final report, which will also be posted on the Web.
A brief discussion followed regarding the guidelines of the American Academy of Family Physicians (AAFP) for accepting exhibits at its national meetings. Some organizations reported not being accepted on a particular exhibit schedule. Dr. Millman stated that a sleep workshop was held at the AAFP meeting 2 years ago, and sleep may be on the agenda in future meetings. The group discussed possible ways to exhibit at more meetings, including forming a coalition, prioritizing the meetings they wished to attend, and sending printed materials only.
NHTSA Update [Dr. Jesse Blatt]
Dr. Blatt reported that educational efforts started in 1996 on drowsy driving continue. Shift workers and young males have been identified as target groups for drowsy driving education. Recently, focus groups were held in Portland and Kansas City to help in the development of creative messages that appeal to shift workers and young males. Several themes were developed and tested. According to focus group findings, shift workers do recognize drowsy driving as a problem but do not know what to do to decrease the risk. Other findings included:
- Knowledge does not seem to motivate shift workers to change behavior,
- Shift workers do not understand how their lifestyle relates to drowsy driving,
- Families influence sleep behavior and can serve as a good leverage point,
- Many shift workers conform to the goals and demands of others, thereby losing sleep,
- Shift workers are often reactive rather than proactive,
- Shift workers often have low expectations for the benefits of lifestyle changes (may try something once and conclude it does not work),
- Many shift workers are satisfied with what they do at work and do not see a need to improve work performance, and
- Shift workers relate to the terms "drowsy" and "sleepy," but not to "tired" and "fatigued."
Dr. Blatt reported that a grant program will be administered to implement and evaluate the pilot phase of this project. Approximately 15 to 20 grants will be awarded. In response to a question, Dr. Blatt stated that the long-term plan is first to evaluate the pilot materials, and later, to make the materials and programs widely known and used.
Mass Media Campaign [Ms. Ellen Sommer]
Ms. Sommer reported that with the new mass media contract in place, mass media efforts more directly support the education program activities. For example, activities were conducted in conjunction with National Sleep Awareness Week, such as the exhibit on the NIH campus. Also in conjunction with National Sleep Awareness Week, a package of B-roll and soundbites on sleep apnea was sent out to television stations nationally via satellite. The materials received a lot of play over the first 3 months, with an estimated audience of 26 million. She reported that two additional public service announcements (PSAs) on sleep apnea have been developed that will go to 5,000 radio stations nationally later this fall. The ASDA may also distribute the PSAs to its member organizations to extend the reach. Ms. Sommer played the PSAs for the group, noting that Education Subcommittee members reviewed the scripts for the PSAs.
Ms. Sommer stated that mass media efforts continue to include the use of Health Beat Radio Network to disseminate messages about sleep and sleep disorders. The NHLBI has been producing three to six spots on sleep quarterly for the Health Beat Radio Network. Ms. Sommer played two recent radio spots on drowsy driving and shift work for the group. Ms. Sommer invited members to suggest ideas for future sleep-related topics.
In response to a question about obtaining copies of tapes and CDS, Ms. Sommer stated that any returns from radio stations are given to sleep centers that request them and that master tapes have been loaned to sleep centers so that they can make their own copies. The NHLBI is not aware of any group or organization that requested a tape and did not receive one. The NHLBI responds to requests as they are received; however, it is difficult to support a wide distribution outside the radio stations. Responding to a question about evaluating the effectiveness of radio PSAs, Ms. Sommer stated that bounceback cards provide limited information about the use of materials and some anecdotal information. Effectiveness is difficult to evaluate since PSAs are used to raise awareness about a topic, but cannot be expected to change behavior by themselves. In response to a question regarding future PSAs on sleep apnea, Ms. Sommer stated that a decision will likely be made later this year, and it is possible that some of the early sleep apnea PSAs could be redistributed.
ORGANIZATION UPDATES [see also organization updates in briefing book]
American College of Chest Physicians (ACCP)
Two sleep medicine courses for chest physicians were held in 1997. The courses featured noted faculty to teach the basics of sleep medicine, with an emphasis on nonrespiratory topics. The course, attended by more than 300 participants, is likely to be offered on an annual basis.
Sleep disorders were discussed in plenary sessions, abstract sessions, and in meet-the-professor formats at the 1997 ACCP national meeting. Sleep disorders will again be on the agenda at the ACCP international meeting to be held in Toronto. A full-day, hands-on workshop postgraduate course, "Nonrespiratory Sleep Disorders," will be offered.
American Sleep Apnea Association (ASAA)
The ASAA reprinted and distributed a few thousand copies of "Sleep Apnea: Is Your Patient at Risk?" to primary care physicians. An information and welcome packet for those interested in starting an A.W.A.K.E. group is available as a hard copy and on the ASAA Web site. A National Sleep Apnea Awareness Day is tentatively scheduled for March 29. This is a take-off on National Sleep Awareness Week, but will be more focused on sleep apnea.
American Sleep Disorders Association (ASDA)
The ASDA board of directors has given its approval to rewrite the narcolepsy slide set. The ASDA has a conference scheduled for October 16-17 on outcomes in sleep apnea. The conference will be held at the Georgetown University Conference Center in Washington, DC. ASDA has received positive feedback from the participants of the high school community outreach program. The ASDA will collaborate with the NCSDR to distribute 200,000 to 300,000 copies of "Insomnia: Recognition and Management in Primary Care" to primary care physicians.
American Thoracic Society (ATS)
At the last ATS meeting in April, abstracts on the effects of sleepiness and driving and the impact of sleepiness on school performance were the most widely recognized topics by the media. A high school initiative in scientific literacy was started in the Chicago area; several high schools are now involved. The upcoming International ATS conference will feature four sleep-related symposia: the identification and impact of arousal, the Sleep Heart Health Study, the interaction between cardiovascular systems and sleep disordered breathing, and the death of innocence: a reappraisal of why infants die suddenly. A postgraduate course called "Sleep Across the Age Spectrum: Dawn to Dusk" will be held prior to the meeting. A joint NIH/ATS conference was held recently in Washington, DC, on the molecular and genomic effects on tissue oxygen deprivation in sleep apnea.
Association of Polysomnographic Technologists (APT)
A large focus of the APT is educating technologists. The APT has noticed an increase in demand for sleep center services recently, without a corresponding increase in the number of qualified technologists. There is little coordinated effort to oversee education modules that have cropped up recently. The APT is examining the feasibility of certifying or accrediting educational programs to introduce and maintain standards.
National Sleep Foundation (NSF)
Mr. Darrel Drobnich introduced Ms. Pat Britz, the new program director of the Women's Sleep Program and the Narcolepsy Registry. The NSF currently has a position open for a communications coordinator. A search is under way for a full-time executive director--a target date of mid-January is anticipated for filling the position. New NSF board members include Dr. Fred Turek and Dr. Anne McCartt. Work has begun on next year's National Sleep Awareness Week, March 29 through April 4. National Sleep Day will be March 30. One possible topic area will be sleep and adolescents.
Narcolepsy Network [see handout in briefing book]
Restless Legs Syndrome (RLS) Foundation
Ms. Cate Murray circulated copies of the most recent materials from the RLS Foundation, including its latest newsletter. The RLS Web site has been brought in-house--the number of users has increased substantially. The site is now more interactive, includes a MEDLINE database, and has Spanish translation materials. The November/December issue of the Saturday Evening Post will contain an article on restless legs syndrome. A 1-hour "ask the doctor" program will be sent to all PBS stations in the United States via satellite. An RLS News Flash will be sent to all 55,000 people in the current database to apprise them of the PBS special. On November 19, an online discussion about restless legs syndrome will take place; restless legs syndrome chat with the experts will feature two physicians answering questions about RLS.
Sleep Disorders Dental Society (SDDS)
SDDS members met with the National Institute for Dental Research regarding oral appliance therapy in the treatment of sleep-related breathing disorders. The SDDS will hold its first certification examination on March 19, 1999, in Chicago. The SDDS is considering maintaining an information booth at the American Thoracic Society's annual meeting. The SDDS annual meeting took place in June, a short distance from the APSS meeting. The SDDS is working with the ASDA to develop coding for oral appliance therapy and other associated procedures.
Sleep Disorders Movements, Inc.
The Sleep Disorders Movements attended the APSS meeting in June and held a discussion group on continuous positive airway pressure (CPAP) compliance. The organization has been contacted by America's Health Network regarding a presentation on sleep and sleep disorders. Brochures focusing on CPAP have been updated; the brochures will be reviewed and edited by Dr. Dement.
FUTURE PRIORITIES [Dr. Millman and Group]
The group continued the earlier discussion about exhibiting at various meetings. The group supported the concept of a coalition but thought that the associated logistics would be difficult. The issue of expense was raised--since it is expensive to attend all relevant meetings, perhaps the organizations could prioritize which meetings to attend or rotate attendance at the various meetings. In response to a suggestion of sending materials and brochures only to meetings, several organization representatives stated that it is important to have someone present to answer questions. A member suggested that there needs to be a coordinating force to address the logistical and planning aspects. In response to a question, Dr. Kiley stated that, currently, the NHLBI exhibits at the ATS meeting and the NCSDR exhibits at the neuroscience and the APSS meetings. Ms. Rogus added that the NHLBI attends other meetings, such as the American Public Health Association meeting and the American Heart Association meeting, on a rotating basis and sleep materials are sent to those meetings. Dr. Kiley suggested that the organizations identify the meetings that are high priority in terms of getting the sleep message out and submit the list to the NCSDR. The NCSDR will examine the list and determine whether any changes should be made in terms of which meetings are attended. Dr. Millman stated that it is easy for the organizations to distribute NHLBI materials because the materials are in the public domain. On the other hand, it is not as easy for the NHLBI to distribute organizations' materials. He suggested that perhaps the NHLBI could distribute a list of sleep-related organizations and their materials as a resource for further information.
Ms. Rogus gave the group a brief overview of how the NHLBI's Office of Prevention, Education, and Control (OPEC) plans its activities. She stated that OPEC is trying to structure its future activities to be more performance based. Measurable outcomes and indicators of success will be examined relative to national priorities and goals. Some areas may show the need for data, and others may show a need for innovative approaches in making a measurable difference. One way that OPEC can address this framework is through the Healthy People Objectives. Healthy People 2010 provides a national framework for strategic management and partnering; the objectives are now being developed. For the first time, sleep-related objectives are included in the healthy people promotion plan. [Ms. Rogus distributed materials from the Healthy People 2010 Web site.] She stated that public comments are now being solicited. [Comments are due December 15.] Ms. Rogus directed members' attention to objective 24, respiratory diseases, which includes objectives for obstructive sleep apnea. She stated that these objectives are developmental, meaning there are no baseline data. Some cohesive national action is needed by 2002 for those objectives to remain in the document.
Organization representatives noted that specific sleep disorders such as restless legs syndrome, narcolepsy, and insomnia are not included in the document. Dr. Millman stated that there are different approaches to getting sleep-related objectives added; hard data are needed to support recommendations. Specific sleep disorders such as narcolepsy and restless legs could be addressed, or a more general approach might be to include sleep under healthy behaviors along with good nutrition, physical activity, and not smoking. Discussion followed regarding whether the Advisory Board should form a subcommittee to address the 2010 objectives. The subcommittee agreed that this issue should be presented to the full Advisory Board, and a subcommittee should be formed to address 2010 objectives. Dr. Kiley reminded the group that whatever is submitted now has to be supported by data by 2002, or the objectives will be removed from the document.
Dr. Millman briefly reviewed the Strategy Development Workshop on Educating Youth About Sleep and Drowsy Driving. He stated the report has just become available. Discussion followed about how the document could be used to identify and implement specific activities.
Ms. Rogus stated that in the near future the Web will be used more extensively, in terms of becoming more interactive, reaching more people, and finding out more about the users.
Dr. Millman invited the group to discuss future priorities. An organization member requested that a physician education project on RLS be initiated. A brief discussion followed regarding the strength of the science for RLS, and whether it is a topic of interest for primary care physicians. Dr. Millman stated that the subcommittee raised the topic of pediatric sleep disorders at an earlier meeting. Some topics could include pediatric sleep apnea, the sleepy child (adolescent), etc. He cautioned that separate documents for the various disorders/conditions would not be well accepted by the pediatric community. Discussion ensued regarding the prevalence, the possible impact of an educational effort, and the existing science base relative to RLS and pediatric sleep disorders. Further suggestions from the group included educational activities focused on circadian rhythm disorders and the impact of common drugs (including alcohol) on sleep. Following an indepth group discussion about future educational activities, the following were identified as the top two priorities:
- Educating primary care physicians about RLS, and
- Developing a fact sheet about the effects of common drugs on sleep.
In response to a question about long-term planning, Dr. Kiley stated that the meeting summaries capture the essence of the recommendations made at previous meetings. He added that the government does do some long-range planning, but it may be done differently than in the private sector. Dr. Kiley stated that the ideas generated and discussed today will be taken forward for consideration and examined in the context of other ideas discussed, such as data acquisition and an improved Web site. In response to a question, Dr. Kiley stated that funding for all the sleep education activities comes from the NHLBI. Money for sleep education is not earmarked separately; it is combined with other NHLBI education programs. The sleep education activities need to be viewed from a new perspective of performance-based products to be competitive with other education programs such as those for cholesterol, high blood pressure, and asthma. Dr. Kiley responded to a question about accepting funds from outside organizations. He stated that the NHLBI can accept gifts as unrestricted funds--they cannot be targeted for specific purposes.
Dr. Millman thanked members for their input and adjourned the meeting.
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