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Health Status and Sociodemographic Characteristics of Adults Receiving a Cystic Fibrosis Diagnosis After Age 18 Years
Journal article   Peer reviewed

Health Status and Sociodemographic Characteristics of Adults Receiving a Cystic Fibrosis Diagnosis After Age 18 Years

Eileen Widerman, Lois Millner, William Sexauer and Stanley Fiel
Chest, v 118(2), pp 427-433
Aug 2000
DOI: https://doi.org/10.1378/chest.118.2.427
PMID: 10936136
Featured in Collection :   UN Sustainable Development Goals @ Drexel

Abstract

cystic fibrosis cystic fibrosis adult cystic fibrosis diagnosis cystic fibrosis late diagnosis
An increasing percentage of cystic fibrosis (CF) diagnoses are occurring in adulthood. The purpose of this study was to explore how age at diagnosis may be associated with selected disease and sociodemographic characteristics. The 1996 Cystic Fibrosis Foundation (CFF) Patient Registry data were analyzed to test for associations between age at diagnosis and selected variables. All cases involved individuals ≥ 18 years who were represented in the CFF Patient Registry for 1996. Patients were assigned to one of two groups: those diagnosed with CF after age 18 years (n = 786) and those diagnosed before 18 years (n = 6,641). In 1996, the incidence of late diagnosis was 7.8%, and the prevalence was 10.9%. The mean age of late diagnosis was 27 years. Respiratory symptoms most frequently led to late diagnosis. Patients receiving a late CF diagnosis were less likely to have alleles for Delta F508. There was no correlation between age at diagnosis and percent predicted FEV1, although patients in the late-diagnosis group were an average of 10 years older than those in the early-diagnosis group. Late diagnosis was associated with fewer complications, fewer hospitalizations, less oxygen use, fewer courses of home IV treatment, and less enzyme use. Women were most often diagnosed late. Men displayed more diversity in conditions leading to diagnosis. Psychosocially, those patients receiving late diagnoses were more likely to be college graduates, married, and employed full time. For those adults who died in 1996, there was a positive association between their age at diagnosis and age at death. Those patients diagnosed with CF as adults differ, both medically and psychosocially, from those diagnosed at a younger age; these differences have implications for diagnosis, treatment, and education.

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UN Sustainable Development Goals (SDGs)

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#3 Good Health and Well-Being

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Collaboration types
Domestic collaboration
Web of Science research areas
Critical Care Medicine
Respiratory System
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