Patient Decision Aid Resources:
A-Z Inventory of Decision Aids (http://decisionaid.ohri.ca/AZinvent.php)
- contains up-to-date and available decision aids identified by the Cochrane Systematic Review Group that meet established quality criteria
The Ottawa Personal Decision Guide (OPDG) (http://decisionaid.ohri.ca/decguide.html)
- designed for any health-related and/or social decision
- two-page, self-administered format can be printed and completed by hand
- one-page format can be filled in online and printed
The following educational resources have been compiled by the development panel to help nurses and their clients learn more about decision support for patients and families living with CKD. It is not intended to be an inclusive listing; Canadian resources are listed first, with the remainder in alphabetical order:
- name and website
- examples of resources available to the public on the website
Canadian Association of Nephrology Nurses and Technologists (CANNT)
This Canadian voluntary, not-for-profit organization is dedicated to promoting the dissemination of knowledge among those involved in the care of patients with renal disease. Efforts are directed toward improving the care of renal patients through formal and informal educational projects for CANNT members in the following sub-specialties (both adult and pediatric): Technology, Hemodialysis, Peritoneal Dialysis, Transplantation and Progressive Renal Insufficiency (Pre-Dialysis).
Kidney Foundation of Canada (KFoC)
This Canadian volunteer organization is committed to reducing the burden of kidney disease through funding and stimulating innovative research; providing education and support; promoting access to high quality health care; and increasing public awareness and commitment to advancing kidney health and organ donation. This website is user friendly and is appropriate for patients, their families and nurses. Information on many topics can be found under the services tab on the homepage. The KFoC document Living with Kidney Disease (4th edition) is available, in PDF format, at www.kidney.ca/files/Kidney/aaCompleteManual.pdf
American Nephrology Nurses’ Association (ANNA)
This American non-profit organization was created to advance nephrology nursing practice and positively influence outcomes for patients with kidney disease through advocacy, scholarship and excellence. Members work in areas such as conservative management, peritoneal dialysis, hemodialysis, continuous renal replacement therapies, transplantation, industry and government/regulatory agencies. Education resources can be found via the tabs down the left side of the homepage, which then direct users to a page spotlighting the care for older adults.
Edinburgh’s Royal Infirmary, Kidney Transplantation (EdREN)
This website from the United Kingdom was created to disseminate cutting edge information in a timely manner to patients, to health professionals who are not renal specialists and for anyone else who is interested in kidney diseases. The homepage shows an A-Z list of topics, and also tabs that lead to more specialized information.
Kidney Patient Guide
This website from the United Kingdom came about as a result of collaboration between health care professionals; experts in information technology and multimedia; specialist health care writers; and people with renal failure and their families. This website provides information for renal patients, their partners and families, health care professionals and anyone else interested in kidney disease. It includes information not only on physical aspects of kidney failure – how the kidneys function, what happens when they don’t and the treatments available – but also on wider issues such as emotional, social and financial implications.
Kidney School is an American interactive, web-based learning program that is offered in modules. It was designed to help people learn what they need to know to understand kidney disease and its treatment, adjust to kidney disease, make good medical choices and provide the tools they need to self-manage care to stay healthier and live as fully as possible doing the activities they enjoy. From the homepage, click on the table of contents to start the modules.
National Kidney Foundation
This American foundation is a voluntary organization that seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases and increase the availability of all organs for transplantation. The goals of the organization include supporting research and research training; continuing education of health care professionals; expanding patient services and community resources; educating the public; shaping health policy; and fund raising. Information is available from the specific tabs (e.g. the patients tab), or from the A–Z index.
National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)
NKUDIC is an American information clearinghouse, established to increase knowledge and understanding about diseases of the kidneys and the urologic system among those with these conditions and their families, health care professionals and the general public. To carry out this mission, NKUDIC works closely with a co-ordinating panel of representatives from federal agencies; voluntary organizations on the national level; professional groups; and state health departments to identify and respond to informational needs about kidney and urologic diseases. All this information is available through the homepage.
The Nephron Information Center
This American centre was designed to make the public more aware of kidney disease, to prevent it when possible, and to help colleagues achieve good outcomes in those who already have end-stage renal disease. They provide as much information as possible to patients, professionals and the general public, in the hopes that this education will be a motivating factor in making the necessary changes to prevent or stall chronic kidney disease. On the homepage there are links to informative areas including, but not limited to, CKD, KDOQI and nutrition. There is also a patient information tab.
RenalWEB is an American, non-affiliated website for the dialysis industry and community. With hundreds of websites containing dialysis product information, RenalWEB functions as a “daily newspaper” for useful information, new products, services and educational resources. Information for professionals and for patients learning about dialysis can be found under tabs for each heading.
Canadian Association of Transplantation (CAT)
Membership in this Canadian association includes health professionals and partners who are involved in every aspect of organ and tissue donation and transplantation, including recovery, allocation and distribution of organs and tissues; managing care for patients pre and post transplant; and recognizing and supporting donor families. CAT is playing a critical role in the development of national guidelines and safety issues involving distribution of organs and tissues. There is excellent information, under the public information tab, on the topic of organ and tissue donation, in a myth vs. fact format, and information regarding organ transplantation.
Canadian Society of Transplantation (CST)
The aim of this society is to provide leadership for the advancement of educational, scientific and clinical aspects of transplantation in Canada. The Society’s Consensus guidelines on eligibility for kidney transplantation are available at: www.cmaj.ca/cgi/reprint/173/10/S1
Trillium Gift of Life Network (TGLN)
Trillium Gift of Life Network, Ontario’s Organ and Tissue Donation Agency, was created to help save and enhance lives by maximizing organ and tissue donations for transplantation. Topics such as resources, programs, news, statistics and support can be found under tabs, or can be searched.
International Transplant Nurses Society (ITNS)
This international non-profit society is committed to the promotion of excellence in transplant clinical nursing through the provision of educational and professional growth opportunities, interdisciplinary networking and collaborative activities and transplant nursing research. Canadian chapters can be located directly from the homepage. Educational brochures, found through the education tab on the homepage, are downloadable in PDF format.
United Network for Organ Sharing, Organ Donation and Transplantation
This American network is a non-profit, scientific and educational organization that collects and manages data about every transplant event occurring in the US. It facilitates the organ matching and placement process using UNOS-developed data technology and the UNOS Organ Center, and brings together medical professionals, transplant recipients and donor families to develop organ transplantation policy. Patient education brochures can be found under the resources tab.
Registered Nurses’ Association of Ontario (RNAO)
The International Affairs & Best Practice Guidelines Program (IABPG) is a signature program of RNAO focused on the development, dissemination, implementation and evaluation of clinical and healthy work environment best practice guidelines (BPGs). The program was launched in 1999 with multi-year funding from the Ontario Ministry of Health and Long-Term Care. There are currently over 30 published clinical guidelines, as well as a Toolkit and Educator’s Resource to support implementation. To date, 10 of the guidelines are available in French, with a continued dedication to translate materials on an ongoing basis. Examples of guidelines relevant to this guideline include: Integrating Smoking Cessation into Daily Nursing Practice and Nursing Management of Hypertension. Clinical Practice Guidelines and a variety of support materials are available for free download from www.RNAO.org.
Canadian Hypertension Education Program (CHEP)
This innovative knowledge translation program is designed to reduce the disease burden of sub-optimal blood pressure, the leading cause of death for patients on dialysis. CHEP provides practical, trustworthy, up-to-date knowledge for health care professionals.
Canadian Diabetes Association
The Canadian Diabetes Association is a leading expert and authority on diabetes in Canada and around the world. Working in communities across the country to promote the health of Canadians and eliminate diabetes, CDA continues to deliver programs and services for people affected by diabetes. The CDA funds leading-edge diabetes research and produces globally recognized diabetes guidelines.