PURPOSE: We sought to examine the employment experiences in a population of adolescents and young adults with cystic fibrosis (CF). METHODS: We administered a cross-sectional survey to 68 individuals with CF, ages 16-25 years, assessing current employment experiences and perceptions of the impact of CF on these experiences. RESULTS: Forty-six percent of respondents reported working < 20 h per week. Sixty-seven percent reported disclosing their diagnosis to their employer. Only one respondent reported receiving formal job guidance in CF clinic, and only 16% reported that a clinician had discussed job-related issues with them. Only 21% reported that they completed CF therapies at work. Older respondents (ages 22-25 years) and those with a lower lung function were more likely to agree that 'balancing employment and CF care is stressful.' CONCLUSIONS: The majority of adolescents and young adults with CF report disclosing their diagnosis at work. Most do not feel that working interferes with routine CF therapies. Very few have received any formal career guidance. Age and lung disease severity are associated with increased concerns about balancing CF care and employment.
PURPOSE: We sought to examine the employment experiences in a population of adolescents and young adults with cystic fibrosis (CF). METHODS: We administered a cross-sectional survey to 68 individuals with CF, ages 16-25 years, assessing current employment experiences and perceptions of the impact of CF on these experiences. RESULTS: Forty-six percent of respondents reported working < 20 h per week. Sixty-seven percent reported disclosing their diagnosis to their employer. Only one respondent reported receiving formal job guidance in CF clinic, and only 16% reported that a clinician had discussed job-related issues with them. Only 21% reported that they completed CF therapies at work. Older respondents (ages 22-25 years) and those with a lower lung function were more likely to agree that 'balancing employment and CF care is stressful.' CONCLUSIONS: The majority of adolescents and young adults with CF report disclosing their diagnosis at work. Most do not feel that working interferes with routine CF therapies. Very few have received any formal career guidance. Age and lung disease severity are associated with increased concerns about balancing CF care and employment.