title: Guidance of children and adolescents with cystic fibrosis.
abstract: Cystic fibrosis is the most common serious genetic disorder in people of European descent. Treatment of these patients is ongoing throughout life and until now has been aimed at the consequences and is still not curative. Over the past 10-20 years, there has been a dramatic improvement of mortality rates for cystic fibrosis, due in large part to advances in medical care. The average age of survival for young people with cystic fibrosis is pushing well into the 20s with one third living into their 30s. Consequently, education plays a major role in management of patients with cystic fibrosis, and starts directly after being sure of the diagnosis. Growing up, these patients experience a lot of problems, and these are especially marked in the adolescent. A special problem, for many cystic fibrosis patients is becoming an adult. Continuity in care for these patients from the pediatric to the adult department is not always guaranteed. It is concluded that patients with cystic fibrosis should be treated in specialized centers, and such treatment cannot be carried out sufficiently by one person, but has to be embedded in a team of caregivers.
authors.affiliation: University Hospital, Groningen, The Netherlands.
authors.forename: J
authors.initials: J
authors.lastname: Gerritsen
authors.forename: H
authors.initials: H
authors.lastname: van der Laag
authors.forename: G
authors.initials: G
authors.lastname: Sinnema
authors.forename: K
authors.initials: K
authors.lastname: Knol
mesh_terms: D000293:Adolescent; D002648:Child; D003131:Combined Modality Therapy; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000534:rehabilitation*; D006801:Humans; D010353:Patient Education as Topic / Q000379:methods*; D011788:Quality of Life; D012803:Sick Role