Patient-reported respiratory symptoms in cystic fibrosis

J Cyst Fibros. 2009 Jul;8(4):245-52. doi: 10.1016/j.jcf.2009.04.003. Epub 2009 May 29.


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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Child
  • Child, Preschool
  • Cough / etiology
  • Cough / physiopathology
  • Cystic Fibrosis / complications*
  • Cystic Fibrosis / physiopathology*
  • Dyspnea / etiology
  • Dyspnea / physiopathology
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Medical Records
  • Qualitative Research
  • Respiration Disorders / etiology*
  • Respiration Disorders / physiopathology*
  • Respiratory Sounds / etiology
  • Respiratory Sounds / physiopathology
  • Severity of Illness Index*