UNITED STATES OF AMERICA - THE SIMON FOUNDATION FOR CONTINENCE


The Simon Foundation has launched several new projects in the last 18 months on both the international and domestic fronts. In June 1997 the Foundation co-sponsored with the Continence Foundation (U.K.) the First International Conference on the Prevention of Incontinence. Held just outside London, the Conference attracted experts from throughout the world. Over a three-day period, they examined the research needs and current knowledge about prevention. Dr. Alan Cottenden chaired the conference panel whose members will author a consensus statement. This consensus statement on the prevention of incontinence will be released at the ICS meeting in Japan. The Conference was sponsored by a generous educational grant from Pharmacia and Upjohn.

On the homefront, the Foundation, in conjunction with the New England Research Institute, a Boston-based think tank, has helped to create three new patient education videos which will be released shortly. The project, sponsored by a grant from the National Institutes of Health, will allow for extensive evaluation of educational videos' impact on patient behavior. It is expected that this evaluation will help us to further understand the patient's educational needs.

In another domestic project, leaders in the field of quality of life questionnaire development, based at Northwestern University's Medical School, are working closely with the Foundation to develop a user-friendly quality of life questionnaire. Sponsored by an educational grant from Uromed, this questionnaire will be available shortly to help health professionals understand the impact of incontinence on each of their patients.

The Foundation's community education program, I WILL MANAGE, continues to expand throughout the United States. Designed to encourage physicians and nurses to conduct patient education seminars, the I WILL MANAGE Program Director's Kit includes a video, promotional materials, content outlines, and a step-by-step manual for the program director. The IWM program is currently being adapted for use in the UK.

To serve those patients whose incontinence cannot currently be cured, the Foundation is testing a model program to help consumers purchase incontinence products at below retail prices. The National Continence Cooperative, funded by a matching grant from Retirement Research Foundation and Mölnlycke, is currently being demonstrated in four diverse communities in New York State and Illinois. Individuals who join these charities band together to raise funds to subsidize group purchases of incontinence supplies. In addition to the goal of appropriate and inexpensive product selection, programs to educate Cooperative members regarding current treatment options will insure that individuals do not turn to absorbent products prematurely before exploring diagnosis and treatment options.

In addition to the above endeavors, we at the Simon Foundation for Continence continue to represent the needs of individuals with incontinence by consulting with industry worldwide, testifying at the FDA, liaising with the ISO Committee on Standards for Absorbent Products, and creating new patient educational materials.

Cheryle Gartley