Patient-reported respiratory symptoms in cystic fibrosis.
BACKGROUND
Cystic fibrosis (CF) specific patient-derived and reported symptom tools are critical steps toward evaluating the outcomes of new therapies for CF.


METHODS
We conducted 25 in-depth qualitative interviews using the Day Reconstruction Method and 9 cognitive interviews at two CF programs, the University of Washington and Seattle Children's Hospital and Regional Medical Center. The interviews were audio-recorded and transcribed, and then coded and analyzed for themes relating to pulmonary symptoms and related psychosocial impacts.


RESULTS
Six pulmonary symptoms were identified as central to CF: cough, sputum production, wheeze, chest tightness, difficulty breathing/shortness of breath, and fever. Emotional impacts included frustration, sadness/depression, irritability, worry, difficulty sleeping; while activity impacts included time spent sitting or lying down, reduction of usual activities, and missing school or work. In all, 8 symptom items, 4 emotional impacts items, and 4 activity impacts were selected for inclusion on a new daily diary. We also assessed triggers for seeking care.


CONCLUSIONS
Using a qualitative inductive methodology, we have obtained patient centered data regarding pulmonary symptoms and burdens and have created a novel patient reported outcome measure for CF. Future studies will assess the validity of the instruments.
Goss
C H
CH
Department of Medicine, University of Washington, Seattle, WA, USA. goss@u.washington.edu
Edwards
T C
TC
Ramsey
B W
BW
Aitken
M L
ML
Patrick
D L
DL
D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003371:Cough / Q000209:etiology / Q000503:physiopathology; D003550:Cystic Fibrosis / Q000150:complications* / Q000503:physiopathology*; D004417:Dyspnea / Q000209:etiology / Q000503:physiopathology; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008499:Medical Records; D036301:Qualitative Research; D012120:Respiration Disorders / Q000209:etiology* / Q000503:physiopathology*; D012135:Respiratory Sounds / Q000209:etiology / Q000503:physiopathology; D012720:Severity of Illness Index