Research Updates in Kidney and Urologic Health

Kidney and Urologic Organizations Offer Wealth of Information

New Print Materials and Websites Help Patients Find Answers

In the past, a patient with a kidney disease or a urinary problem might complain about the lack of understandable materials on the subject. The Internet has made finding information easier for patients, but wide availability of materials does not guarantee their reliability.

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) works to help patients and their families find answers to their questions about kidney and urologic diseases. The clearinghouse fulfills this mission in two ways:

• developing health information materials for patients
  
  
• referring patients to reliable sources of information and support
  
  

NKUDIC works with a coordinating panel whose members represent national professional societies and patient-advocacy organizations concerned with kidney and urologic health. While many of the organizations have missions supporting research or professional development for health care providers, most also support health information for the public. The following organizations work with NKUDIC and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and share the goal of providing science-based information about kidney and urologic diseases to patients and the public.

The American Association of Kidney Patients (AAKP) offers the AAKP Patient Plan, a series of booklets, checklists, and newsletters designed to guide patients through the stages of chronic kidney disease and end-stage renal disease. AAKP also provides a number of programs and services specifically for those who have chronic kidney disease but are not yet on dialysis. Kidney Care: Finding Your Strength is a program that offers free local educational sessions for people who have kidney disease or are approaching it. AAKP also publishes aakpRENALIFE magazine and the Renal Flash electronic newsletter.

The American Foundation for Urologic Disease and the American Urological Association have developed UrologyHealth.org, a patient education website with information about a wide range of conditions treated by urologists. Visitors can use a navigation bar to browse through general topics in adult and pediatric urology and find pages on specific conditions such as prostatitis or enuresis. Difficult terms are underlined so that the reader can click on the word to view a pop-up definition, which can also be found in an A-to-Z glossary.

In addition to providing direct financial assistance to patients, the American Kidney Fund (AKF) supports a number of educational programs. The AKF established the Minority Health Outreach Program (MHOP) to address the alarming rate of chronic kidney disease and related conditions in African-American and Hispanic communities. The program offers medical screening, nutrition and fitness presentations, and followup services, including medical referrals and public education materials. Titles of AKF brochures include "Kidney Disease Strikes African Americans" and "African Americans and Diabetes." AKF's latest brochure is titled "What I Need to Know About Preventing Complications of Chronic Kidney Disease."

The American Nephrology Nurses’ Association (ANNA) works to advance nephrology nursing practice and positively influence outcomes for patients with kidney and other diseases. Special Interest Groups (SIGs) within ANNA promote education and practice standards for hemodialyis, peritoneal dialysis, transplantation, and pediatric nephrology. The SIGs have developed a series of fact sheets for patients and family members. Parents of children with kidney disease can give the fact sheets to school administrators to help explain their child’s condition. These fact sheets can be downloaded from the ANNA website by clicking on "Practice" on the navigation bar.

The American Society of Nephrology (ASN) works to enhance and assist the study and practice of nephrology, to provide a forum for promulgating research, and to meet the professional and continuing education needs of its members. ASN worked with the NIDDK to establish the Kidney Disease Clinical Studies Initiative (KDCSI), which offers support for data analysis, protocol development, and formation of consortia to plan clinical studies. ASN members serve on the KDCSI Steering Committee. The ASN is also working with the National Kidney Foundation and the Renal Physicians Association to sponsor a workshop to develop an action plan for dealing with the growing number of people in the early stages of chronic kidney disease.

The Clinical Affairs Committee of the American Society of Pediatric Nephrology (ASPN) provided editorial review for NIDDK's new series of fact sheets on kidney disease in children. ASPN members have also reviewed patient fact sheets for the National Kidney Foundation. The ASPN is participating in the steering committee of the National Kidney Disease Education Program to ensure that it addresses pediatric issues. The ASPN publishes KIDney NOTES, a newsletter that keeps pediatric nephrologists informed on legislative issues, research opportunities, and professional meetings.

The American Society of Transplantation (AST) offers a forum for the exchange of knowledge, scientific information, and expertise in the transplantation field. The AST website provides a patient education section where visitors can download brochures that explain the procedure for receiving a transplanted kidney, liver, heart, or lung and how to keep a transplanted organ healthy. Available titles include "Getting a New Kidney: Facts About Kidney Transplants," "Keeping Your New Kidney Healthy: Facts About Transplant Medications," and "Can Anyone Be an Organ Donor? Facts About Living Organ Donation."

The American Urogynecologic Society (AUGS) is dedicated to research and education in urogynecology and to improved care for women with lower urinary tract disorders. The patient information section of the AUGS website helps women identify their problem through a series of links with labels such as "I have to urinate frequently"; "I leak when I cough, exercise, laugh, or sneeze"; "I can't hold my urine when I get the urge to go"; or "Since the birth of my baby, I am leaking urine." Additional fact sheets deal with sexuality and incontinence, overactive bladder, stress incontinence, and surgery for incontinence. An additional fact sheet answers the question "What Is a Urogynecologist?" The website also helps visitors locate a urogynecologist in their area.

The Interstitial Cystitis Association (ICA) offers information and support to patients with IC and their families, educates the medical community about the disease, and promotes research to find effective treatments for IC and, ultimately, a cure. The ICA publishes two quarterly newsletters: the ICA Update, for patients and general audiences, and the ICA Physician Perspectives, with news and information for health professionals. Café ICA is a monthly online news digest. The ICA website also provides sections on treatment, research, and clinical trials. The ICA Question Corner allows visitors to submit questions and view responses to others’ questions. Patients can use the ICA website to find local support groups and learn about self-help strategies.

The nonprofit Medical Education Institute, Inc., administers the Life Options Rehabilitation Program to help people on dialysis live long and well. Life Options publishes the quarterly newsletter Renal Rehabilitation Report for patients and health professionals; it deals with research, policy issues, and stories about successful renal rehabilitation initiatives on the local, regional, and national levels. Other Life Options publications include booklets on exercise, education, and employment for dialysis patients. In 2002, Life Options launched Kidney School (www.kidneyschool.org), a patient education website with 10 modules on how kidneys work, treatment modalities, vascular access, lab tests, nutrition, and other topics. Two more modules on sexuality and staying active have been added, and four others are planned.

The National Black Nurses Association (NBNA) provides a forum for collective action by nurses to investigate, define, and advocate for the health care needs of African Americans and to implement strategies that ensure access to health care that matches or exceeds the health care standards of the larger society. In addition to promoting the nursing profession through education and mentoring programs, NBNA works to build consumer knowledge and understanding of health care issues. In 2002, NBNA joined a coalition supporting a national public health initiative to help the more than 17 million Americans who have diabetes achieve their target blood glucose levels.

The National Kidney Foundation (NKF) works 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 NKF's goals include public education, as well as fundraising and support for research and professional development. The Kidney Disease Outcomes Quality Initiative (K/DOQI) is a patient outcomes improvement program that develops clinical practice guidelines. The K/DOQI Learning System is a new umbrella program for NKF education programs. It is designed to ensure that all information is grounded in the scientific base established by the K/DOQI guidelines. The NKF's education programs include the Kidney Early Evaluation Program (KEEP), which provides free health screenings for the early warning signs of kidney disease, and Rehabilitation, Information, Support, and Empowerment (RISE), which helps dialysis patients resume meaningful daily activities.

The Polycystic Kidney Disease (PKD) Foundation promotes research to find a cure and improve the care and treatment of those who have the disease. The organization publishes PKD Progress magazine to disseminate the latest research developments, report on health policy issues, provide patient information, and promote foundation activities. The organization has translated basic PKD information into 16 languages. In 2002, the foundation created a public service announcement (PSA) campaign to help raise awareness of PKD. The campaign, which includes print, radio, and television elements, was designed to create a broader web of PKD awareness and to guide people to the foundation for further information. PSA distribution will begin in 2003.

The Renal Physicians Association (RPA) represents nephrologists, practice managers, advance practice nurses, and physician assistants in their pursuit and delivery of quality renal health care. The RPA has published nearly 40 position papers on issues ranging from insurance coverage for daily hemodialysis to ways to deal with the dwindling workforce of nephrologists and nurses. The RPA's three clinical practice guidelines cover hemodialysis adequacy, shared decisionmaking in the appropriate initiation of and withdrawal from dialysis, and patient preparation for renal replacement therapy.

The Simon Foundation is a not-for-profit educational organization dedicated to providing assistance and support to those experiencing urinary incontinence. The foundation publishes the Informer, a newsletter on continence issues, organizes self-help groups, and advises manufacturers and medical researchers on patients. The foundation published Managing Incontinence, a book for the lay audience. The I Will Manage program provides health professionals with the resources to organize local support groups. The program kit includes promotional materials, guidelines for conducting support sessions, and participant course materials.

The Society of Urologic Nurses and Associates (SUNA) is a professional organization committed to excellence in patient care standards and a continuum of quality care, clinical practice, and research through education of its members, patients, families, and communities. SUNA has developed eight new patient fact sheets on benign prostatic hyperplasia, chlamydia, genital warts, IC, kidney stones, local estrogen replacement, prostatitis, and urinary tract infections. The fact sheets will be published in SUNA's Journal of Urologic Nursing.

The United Network for Organ Sharing (UNOS) is a nonprofit scientific and educational organization that administers the nation’s Organ Procurement and Transplantation Network (OPTN), established by the Congress in 1984. As the OPTN administrator, UNOS collects and manages data about every transplant occurring in the United States, facilitates the organ matching and placement process, and consults medical professionals, transplant recipients, and donor families to develop organ transplantation policy. UNOS publishes the UNOS Update newsletter, fact sheets on various topics relating to transplantation, bioethics white papers, and patient brochures. The new UNOS patient website, www.transplantliving.org, includes sections called Transplant 101, Organ Data Source, Living Donation, Resources, and Data.

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