Starting together: a focus group for the organization of a CKD outpatient care unit.

INTRODUCTION: The growing interest in patient empowerment in chronic diseases underlines the importance of assessing patients' opinions in planning healthcare strategies. Focus groups are flexible tools for investigating innovative aspects of care. The aim of the study was to use a focus group to define the main requirements for a chronic kidney disease (CKD) outpatient care unit. METHODS: The focus group met during the opening of a new CKD outpatient facility. It consisted of 12 patients with long-term experience of CKD, dialysis and transplantation; they had been followed previously by the senior physician, who moderated the discussion. The discussion was tape-recorded and the results were summarized and approved by all participants. RESULTS: The group made 10 major suggestions: 1. Therapeutic continuity in all disease phases, from pre-dialysis to transplantation; 2. Possibility to choose the reference physician; 3. Strict integration with the nursing activities; 4. Organizational flexibility, to adapt to the needs of daily life; 5. To be "fully" taken care of, with organizational support for blood tests, imaging and consultations; 6. Need for time with the reference physician in critical phases of the disease; 7. Identification of a network of consultants, in keeping with the need for continuity of care; 8. Educational sessions; 9. Meetings for critical discussion of organizational performances; 10. As a setting: a home for the disease and not a disease to take home. CONCLUSION: Continuity of care and flexibility of organization, allowing time for education and discussion, are the quality requirements of our CKD patients.