Transferring to adult health care: Experiences of adolescents with cystic fibrosis

This study investigated the experience of transferring to adult health care from the perspective of adolescents with CF and their parents, seeing the adult hospital as the most appropriate place to provide care for adolescents or young adults with CF.

Abstract

YSTIC FIBROSIS (CF) is a genetic disorder resulting in the dysfunction of exocrine glands; it is mainly restricted to, and is the most common autosomal genetic disorder in the Caucasian race (Harris & Super, 1991; Jackson, 1989). The incidence of CF is 1:2,500 (Harris & Super, 1991) to 1:3,500 (Fitzsimmons, 1993) live births in 1990. The severity of symptoms results in a range of differing problems for the child and family. Almost all children with CF have respiratory problems, often culminating in secondary pulmonary infection that requires hospitalization for treatment of the infection. Gastrointestinal problems are also experienced by many of these children. The focus of management is strategies to improve and maintain pulmonary function and to prevent secondary infection. Data from the United States cite the median survival age as 10 years in the 1960s, and 28 years in 1990 (Fitzsimmons, 1993). The increase in life expectancy for individuals with CF is a result of advances in treatment and management of the disease (Fitzsimmons, 1993). This study investigated the experience of transferring to adult health care from the perspective of adolescents with CF and their parents. The adult hospital is seen as the most appropriate place to provide care for adolescents or young adults with CF because adolescent independence and self-sufficiency can be