Difficult Conversations: Discussing Prognosis With Children With Cystic Fibrosis.

Difficult Conversations: Discussing Prognosis With Children With Cystic Fibrosis.

Saunders J; Prieur M; Walter M; Borowitz D; Dellon E

DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.250

Journal Of Pain And Symptom Management

2016

Objectives
Describe how and when individuals with cystic
fibrosis learn about prognosis with a life-limiting
disease, specifically its progressive nature and
the median life expectancy.
Describe the emotional impact of initial communication
about prognosis with cystic fibrosis, a
life-limiting genetic disease.
Acquire new language for initiating conversation
about prognosis with individuals with a lifelimiting
disease as well as a general age-based
timeline for when to initiate prognosis
conversations.
Original Research Background. No published
studies address how patients with cystic fibrosis (CF)
receive and perceive education about disease prognosis.
Related research suggests a need for more
information and strategies for coping with this
burdensome disease and its limited life expectancy.
Research Objectives. To describe patient, parent,
and provider experiences with communication about
prognosis and the emotional impact of initial communication
and to elicit recommendations for improving
communication.
Methods. Semi-structured interviews were conducted
with 18-25-year-olds with CF, parents of the 18-25-yearolds,
and CF care providers at two CF centers. Thematic
analysis of responses was conducted by the
research team.
Results. Thirteen patients, eight parents, and seven
CF care providers (five physicians, one nurse, and
one social worker) participated. More than half of patients
(54%) learned about prognosis independently,
not from a parent or provider. Fear and sadness
were common emotional responses. All groups recommended
in-person, individualized communication,
describing this discussion as a ‘‘milestone’’ in disease
self-management. Most patients (77%) and parents
(86%) felt a provider should initiate communication
about prognosis. Providers described uncertainty
about when to address prognosis and how to instill
hope while sharing information. Limited time, lack
of confidence in addressing this topic, waiting for patient
cues, and protecting parents were the top barriers
to communication. While providers expressed
concern about affecting mood and adherence, most
patients reported that learning about prognosis did
not negatively affect their outlook (79%) and that effects
on adherence were often positive.
Conclusion. Patients with CF and their parents and
providers acknowledge challenges communicating
about prognosis. Patients desire earlier, individualized,
in-person communication. Standardized provider
prompts to initiate communication about
prognosis would ensure all patients are appropriately
aware of prognosis. Age-appropriate educational materials
could be used to facilitate conversations between
patients, families, and providers.
Implications for Research, Policy, and
Practice. Though CF-focused, the themes elicited
from this research can be applied to communicating
prognosis in other life-limiting childhood illnesses.

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March 2016 List