[House calls to patients with an immunodeficiency disorder]

Eighty-seven patients with a primary immunodeficiency (PID) and their family doctors were interviewed on their opinions and experiences with the illness and the treatment. The aim of this inquiry was to gain insight in the problems that arise at home. Primary immunodeficiencies are rare and therefore unknown not only to the broad public, but also to many doctors. Patients experience much uncertainty about the character of their ailment, the risk of infections, the treatment possibilities and the prognosis. Information is greatly needed, but hardly available. Patients receive no written information on the subject from their specialists. The contact between PID patients and their family doctor is, generally speaking, poor. Treatment is done mainly on a (poli)clinical basis, leaving the family doctor out of the picture. Most patients say they would prefer home treatment; most family doctors say they would like to be more involved. The patient, however, is very often rushed to the hospital with the first symptoms of an infection. In this article it is argued why it is advisable to improve the contact between these patients and their family practitioners, even when the disease requires treatment by (super)specialists. In view of these facts and arguments it can be considered a challenge for the doctors at home and in the hospital to integrate both kinds of medical care, in order to prevent psychosocial disorders as a sequel of a somatic disease. The second part of the article deals with the setting up of an organisation of PID patients. Benefits of such an organisation, and also the possible risks involved, are discussed.