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Pediatric pulmonology

The general practitioner’s role in management of patients with cystic fibrosis

Iustina Violeta Stan, Valentina Comănici, Dumitru Matei, Mihai Craiu
Institutul de Ocrotire a Mamei și Copilului „Alfred Rusescu“ –București


Cystic fibrosis or mucoviscidosis (CF) is the most frequent monogenic genetic disease with autosomal dominant transmision in caucasians. Currently, the typical approach is referring the CF patient to specialized centers with multidisciplinary teams. The inherent questions appear: which is then the role of the general practitioner (GP)? Should the GP be confined to the pasive role of exchanging medical letters with the specialist, or should he take active part in monitoring the disease? Is it ethically and professionally correct for the GP to simply copy the treatment of a patient that he didn't actually see for years, or to assume the palliative care in final stages of a patient who was actually taken care of only by the specialist? What are the families' expectations and what is the level of competence they expect from the GP? These are some of the questions we will try to answer, considering the expertise we accumulated in the regional center in "Alfred Rusescu" Institute for Protection of Mother and Child, where 16.22% (60 out of 370) of CF patients in Romania are monitored, and based on a questionnaire addressed to the CF patient's families.

Keywords: general practitioner, cystic fibrosis, child, questionnaire