Patient-Friendly Resources
As pharmacists and frontline healthcare professionals, we can also guide patients to additional sources of information to help manage their disease. Patients with narcolepsy or who have been diagnosed with narcolepsy can feel that they have very little options and are alone with their condition. They may not receive adequate information and resources to be able to make educated choices and or have their questions answered. As a pharmacist, you can help connect these patients with various resources to inform them about narcolepsy, and to provide them with resources that can help in better managing their disorder. The following organizations and websites are intended for patients with sleep disorders, including those who suffer from narcolepsy, and are useful for patients in their own way. Links to these websites are in blue; a brief description of each one and how they will help patients is provided below.
Xyrem (sodium oxybate) website
The official Xyrem website, developed by the American manufacturer of sodium oxybate (Jazz Pharmaceuticals), provides comprehensive information regarding sodium oxybate. The website has been designed for healthcare professionals, however patients can find helpful information as well. This website provides detailed information regarding the efficacy, safety, and administration of sodium oxybate, and patients can review how to properly administer the drug as well as important considerations when taking it. Information regarding narcolepsy with cataplexy, as well as the Xyrem Success Program is provided for both healthcare professionals and patients as well. It should be noted that this website is American, and not everything may be applicable to patients in Canada, as intricacies such as the dispensing process through the Xyrem Success Program may be slightly different.
The Canadian Sleep Society (CSS)
The Canadian Sleep Society is a professional association of clinicians and scientists whose mission is to further the advancement and understanding of sleep and its disorders through scientific study and public awareness.
One of the most useful aspects of this website is within the 'Education and Information section, which is the listings of sleep clinics across Canada and the map of sleep clinics across Canada. These links provide access to various registered Canadian Sleep Disorders Centres across Canada, and will become useful to those who are unfamiliar with how to go about locating a sleep clinic and practitioners who specialize in sleep within their area. Once they access the site, the patient can browse through the list and locate a sleep centre that is close to their area. They can click on the name of the centre on the left hand side, which will bring them to another page showing the location of the sleep centre on Google maps. They can then click on the green arrow indicating the exact location of the sleep centre to find out the phone number of the centre.
This map of sleep clinics across Canada was developed to assist the public and health care professionals with finding a local sleep clinic. Information on the sleep facilities for each province was collected in late 2010 and early 2011, and data were verified by members of the Canadian Sleep Society.
Also under the 'Education and Information' tab are several patient-friendly tools and practical information regarding sleep and sleep disorders. These include a variety of sleep brochures for different patient populations (pregnant women, children) and conditions (narcolepsy, sleep apnea, etc.), as well as helpful information on sleep disorders. Overall, the Canadian Sleep Society website is a helpful and useful resource to recommend to patients looking for more information about narcolepsy and how to manage their disorder.
One of the most useful aspects of this website is within the 'Education and Information section, which is the listings of sleep clinics across Canada and the map of sleep clinics across Canada. These links provide access to various registered Canadian Sleep Disorders Centres across Canada, and will become useful to those who are unfamiliar with how to go about locating a sleep clinic and practitioners who specialize in sleep within their area. Once they access the site, the patient can browse through the list and locate a sleep centre that is close to their area. They can click on the name of the centre on the left hand side, which will bring them to another page showing the location of the sleep centre on Google maps. They can then click on the green arrow indicating the exact location of the sleep centre to find out the phone number of the centre.
This map of sleep clinics across Canada was developed to assist the public and health care professionals with finding a local sleep clinic. Information on the sleep facilities for each province was collected in late 2010 and early 2011, and data were verified by members of the Canadian Sleep Society.
Also under the 'Education and Information' tab are several patient-friendly tools and practical information regarding sleep and sleep disorders. These include a variety of sleep brochures for different patient populations (pregnant women, children) and conditions (narcolepsy, sleep apnea, etc.), as well as helpful information on sleep disorders. Overall, the Canadian Sleep Society website is a helpful and useful resource to recommend to patients looking for more information about narcolepsy and how to manage their disorder.
Narcolepsy Network
Like the CSS website, The Narcolepsy Network also provides several useful tips, tools, and resources. Under the 'About Narcolepsy' section, there is an FAQ section that contains very informative and helpful information that explains the different aspects of narcolepsy with cataplexy. It is written in patient-friendly language and explains concepts in basic terms that is easy to understand. Within the 'Treatment' heading, patients can access information and pdf handouts about the various medications used to treat narcolepsy symptoms, a sample sleep log to document the patient's sleeping habits and patterns, tips for wakefulness, lifestyle therapies, and alternative medications.
Another useful aspect of this website is that it provides educational materials, including general information about narcolepsy, narcolepsy in the classroom, and a medication brochure. Another great website to offer patients who want to learn more about narcolepsy.
Another useful aspect of this website is that it provides educational materials, including general information about narcolepsy, narcolepsy in the classroom, and a medication brochure. Another great website to offer patients who want to learn more about narcolepsy.
Sleep Wake Disorders Association
This website links to the Sleep Wake Disorders Association - North York (Toronto) chapter. The content on their website is divided into the following categories:
- Articles from members
- Humor
- Patient support online
- Government resources
- Information Resources
- Research news
References
http://www.xyrem.com/healthcare-professionals
http://www.canadiansleepsociety.com/
http://www.narcolepsynetwork.org/
http://www.sleepwaketoronto.org/
Images:
http://www.xyrem.com/healthcare-professionals
http://www.canadiansleepsociety.com/
http://www.narcolepsynetwork.org/
http://www.sleepwaketoronto.org/
http://bouldersleeptherapy.com/disorders/narcolepsy.php/
autoimmunediseasesa2z.com
www3.unil.ch
http://www.canadiansleepsociety.com/
http://www.narcolepsynetwork.org/
http://www.sleepwaketoronto.org/
Images:
http://www.xyrem.com/healthcare-professionals
http://www.canadiansleepsociety.com/
http://www.narcolepsynetwork.org/
http://www.sleepwaketoronto.org/
http://bouldersleeptherapy.com/disorders/narcolepsy.php/
autoimmunediseasesa2z.com
www3.unil.ch