Life without quality. Reflections of a female focus group on life, health and kidney disease.

Focus groups are increasingly employed in clinical practice as their flexible structure permits the range and depth of experiences of health service users and chronically ill individuals to be explored and recorded. A focus group workshop on quality of life was held in March 2007 involving a group of patients either awaiting transplantation, following transplantation, or with a family member who had already undergone renal replacement therapy (RRT). After intensive discussion the group produced the following consensus points. Before talking about quality of life, physicians should call us by our names, instead of by the names of our diseases. The true disease is the ignorance of diversity. The life of a person with a chronic disease is entangled with the disease and with the fear of the disease. It is impossible to consider one's disease separately from one's life, loves, failures, families, and dreams. To evaluate the quality of our life means knowing us, as people. We do not need other numbers. Physicians often see us as boxes, with a disease inside. That's not what we are. We need time. Discussions about the quality of life should include the people around us. The disease steals a lot from you, but it also gives you something in return. We do not feel sick. The main result was to highlight the close relationship between quality of life and quality of care. Underlining the importance of a global approach to health, and the role of the physician as a leader in all aspects of care.