Abstract
Background Individuals with cystic fibrosis (CF) often have
psychological difficulties on top of their medically complex care, such
as anxiety, depression, and medical mistrust. These have been shown to
be associated with worse adherence, pulmonary function test results, and
other health outcomes. In this pilot trial, we implemented a journaling
program based on narrative therapy methodology to improve mental and
physical health outcomes for individuals with CF. Methods Eight
adolescents aged 12-17 with a confirmed diagnosis of CF followed in a
single center cystic fibrosis clinic were emailed weekly journaling
prompts that explored topics like: treatment adherence, feeling
different with CF, anxiety, depression, and interpersonal relationships.
Subjects were emailed surveys about their experience with the writing
assignment, and baseline health data was collected from the electronic
medical records. Results The average score for the Pediatric Symptom
Checklist (PSC-17) decreased by 5.5 points, and the post-study average
(mean 23.5, SD 12.2) fell to less than 28, which is the cutoff for
screening positive for behavioral or emotional problems. Participants
reported the study was enjoyable and had improvement in feelings of
anxiety/depression. 100% of participants responded “Strongly Agree”
to the statement “I recommend other people with CF to write about the
topics from this study”. Conclusions The journaling intervention for
individuals with CF was feasible and well received. Initial results show
improvement in PSC-17 and other wellbeing measures. Further studies are
needed to evaluate the impact of journaling on mental health and disease
outcomes.