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Ostomy Forum - an historical perspective

In September 1996, Dansac arranged a symposium for experienced and dedicated Enterostomal Therapists (ETs) from different countries and different practices, who shared a common motivation to improve the quality of life of their patients and the quality of stoma care.

Twenty nurses from six countries attended - Denmark, Sweden, United Kingdom, Germany, Norway and The Netherlands.

The primary concern of a health professional is the patient. Dansac not only shares this concern but has always been dedicated to the care and the well-being of the ostomist.

Dansac’s mission with the initiation of the Ostomy Forum project was to engage - together with the ETs- in an analysis of the total course of an ostomy operation. The main purpose was to elucidate all critical steps in order to find areas for improvement in the cooperation between ETs and all other parties involved in patient recovery and care.

In order to identify short and long term consequences of stoma surgery the first step was to develop an international patient record document. This would allow ETs to universally gather consistent and complete data on individual patients; an important first step in the ability to recommend improvements in practice.

It was considered important to develop a form that was easily understandable by all nationalities -and easy to use. The participants were particularly aware of countries where the speciality of enterostomal therapy was in development, and hoped that this documentation would help support the nurses in these nations to achieve and maintain a high quality of care for their patients.

The project should be based on the ET’s daily experience and should focus on the consequences of stoma surgery, for the life and well being of the ostomist. The project was to be different, realistic and achievable.

The nurses in the project came from different practices, different countries and different health care systems. Trying to reach a common understanding and format of the assessment forms resulted in long and lively debates. It was only their willingness for making improvement in practice that finally resulted in a first version of a History Taking Form in late 1998.

For a period of two years (1999-2000) the History Taking Forms were tested, evaluated and changed both in content and format. This was both a challenge and at times a struggle and therefore guidelines were developed to enable the HTF to be used uniformly by all participants in the project.

Click here for more details on The History Taking Form.

In September 2000, the project was evaluated with great success and it was decided to involve an independent statistician in order to evaluate the usefulness of the History Taking Form.

A postal questionnaire was designed and sent to 40 Ostomy Forum participants and seven new nurses around the world. The respondents felt that the forms meet all needs for history taking and that the information was well structured. The majority also found that the guidelines were set out well and that the form was user-friendly.

Upon evaluation of the HTF it was decided to divide the form into two sections, a HTF and an enhanced Follow-up form.

The next step was: How do we collect and record complete data on individual patients, and use the data to recommend improvements in practice?

It was decided to develop a Follow-up form that would enable the ET to identify ostomy related Quality of Life (QOL) issues/concerns and physical symptoms occurring in the first year following surgery.

To ensure uniformity of observations made, an Observation Index was devised, so that ostomy problems and their frequency could be identified and necessary intervention taken.

From October 2000 till September 2001 a prospective study was undertaken as a pilot project to test the Follow-up form and the Observation Index, developed by the group. Patients were monitored for a maximum of one year at specific intervals.

In 2002 the members of the Ostomy Forum presented the pilot findings at WCET World Congress in Florence and in 2005 published the findings in the WCET journal.

The pilot study revealed that the forms did not always provide sufficient information because guidelines on how to complete the forms were not available. In general we saw the same problems in all participating countries. Proposals for improvement suggested that patient gender and age had to be registered, and the type of stoma and whether it is permanent or temporary should be clearly stated. The same applied a s to whether the operations were planned or emergency cases. Exact rules for filling in the forms were established. This demand was not only out of consideration for the database, but even more for other nurses who take over patients and need to understand their history. The choice of answers regarding psychological, social and sexual observations had to be wider in order to learn more- not yes or no answers.

Following WCET in Florence we took a long look at what we had achieved and how we could take it forward. A new statistician was employed to try to further validate the tools we had developed. We embarked on an ambitious study over the following two years. This last phase of our project has generated many important findings which has re-enforced the value of the important tools that we have developed.

We believe that using these tools will allow ETs to be proactive in the early detection of problems and provide appropriate intervention and guide ET nursing practice across countries and cultures.


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