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Difficult conversations: Discussing prognosis with children with cystic fibrosis
Author(s) -
Farber Julia Gray,
Prieur Mary G.,
Roach Christine,
Shay Rosemary,
Walter Michelle,
Borowitz Drucy,
Dellon Elisabeth P.
Publication year - 2018
Publication title -
pediatric pulmonology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.866
H-Index - 106
eISSN - 1099-0496
pISSN - 8755-6863
DOI - 10.1002/ppul.23975
Subject(s) - medicine , feeling , life expectancy , sadness , cystic fibrosis , recall , pediatrics , young adult , disease , family medicine , psychiatry , gerontology , population , psychology , social psychology , environmental health , anger , cognitive psychology
Background Despite the chronic, progressive, and life‐threatening nature of cystic fibrosis (CF), there are no guidelines for when and how to communicate prognosis to children with CF. Methods Semi‐structured interviews with young adults with CF, parents of young adults with CF, and multidisciplinary CF health care providers assessed recall of and practices for communicating about prognosis. Recommendations for improvements were also solicited. Results Young adults with CF recalled learning that life expectancy is limited by CF between the ages of 8 and 16 years, and that CF is a progressive disease between the ages of 7 and 19 years. They reported that the information often came from CF physicians or from online resources. Patients and parents reported earlier knowledge of prognosis than providers assumed. While learning about prognosis caused sadness and stress for some patients and families, others denied negative feelings. Interestingly, most patients reported that disclosure of prognosis had minimal impact on their adherence and treatment goals. Patients and parents reported wanting physicians to be involved in conversations about prognosis. However, providers noted several barriers to discussing prognosis, including their own reluctance, time limitations, and uncertainty about appropriate timing and content of communication. Conclusions Communication about prognosis is important but also difficult for providers, patients, and families. Appropriately timed conversations, using tools to facilitate communication, could ensure patients receive timely, accurate information.