Long-term Quality of Life of Patients With Permanent End Ileostomy: Results of a Nationwide Cross-Sectional Survey.

Background: Patients with permanent end ileostomy are at high risk for detrimental stomal effects on their quality of life. However, little is known about the long-term quality of life of these patients.

Objective: The purpose of this study was to assess long-term quality of life in patients with permanent end ileostomy.

[Patient involvement in clinical guideline development: are patient organisations prepared for this task?].

The involvement of patients in the development of clinical guidelines essentially aims at ensuring and improving the quality of patient-centred care. Hence, it becomes an important tool for quality management in medicine since patients are learning the hard way where clinical care is lacking. This may include the inappropriate consideration of current medical knowledge, the unintelligible or insufficient information and education of the patient or information gaps at the interface between care settings.

[Shared decision-making based on equal information. Patient guidelines as a tool for patient counseling].

In discussions on the quality of cross-sectorial health-care services high importance is attributed to patient education and patient counseling, with guideline-based patient information being considered a crucial tool. Guideline-based patient information is supposed to serve patients as a decision-making basis and, in addition, to also support the implementation of the guidelines themselves. The article highlights how patient guidelines for National Disease Management Guidelines in Germany--within the scope of patient education and patient counseling--may provide a uniform information platform for physicians and patients aiming to promote shared decision-making.

[Participation of patients in the program for national disease management guidelines--current state and implications].

Patient involvement has been implemented in the Program for National Disease Management Guidelines since 2005. Currently patient/consumer participation is being incorporated in terms of patients' comments of consultation papers on National Disease Management Guidelines (NDMG) and in the development of NDMG-based patient guidelines (PG). The editorial activities in patient guideline development from the beginnings to its publication are conducted in close cooperation with the patient representatives appointed by the Patient Forum.

[Need-oriented support offers of self-help groups for handicapped or chronically-ill people].

During the last decades, self-help groups and self-help organizations have become an important part of the health system. Their success is explained mainly by the fact that their support offers are fully oriented to the needs of people with handicaps or chronic diseases. The present paper describes the support requirements of people with handicaps or chronic diseases, the type of need-oriented offers they request, and the types of self-help groups available for the corresponding support, including the identification of factors contributing to their performance and the difficulties inherent to their organization.