CF RESPIRATORY SYMPTOM QUESTIONNAIRE

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This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Cystic Fibrosis (CF) is one of the most common inherited fatal diseases. Over the past thirty years, the median age of survival has improved from 14 years in 1969 to 32.9 years in 2003 in the United States. With this improved survival, this disease has been transformed from a disease with very high infant mortality to a disease that must now be considered chronic and progressive. Improving the survival in these patients has been the primary goal over the last 30 years; however, advances in survival must be coupled with improvement in patient-oriented outcomes such as improved health-related quality of life and relief of symptoms. There are two parts to this study: Part 1 is a qualitative study of CF symptoms, in which each participant will be interviewed once while they are in exacerbation ("ill state"). In this part, a total of approximately 30 participants will be enrolled, stratified by age. Part 2 is a pilot study to test the feasibility and acceptability of the CF-specific symptom diary and questionnaire.