Abstract
BackgroundThere is no disease-specific instrument to assess health-related quality of life (HRQL) in patients with idiopathic pulmonary fibrosis (IPF).MethodsPatients' perspectives were collected to develop domains and items for an IPF-specific HRQL instrument. We used item variance and Rasch analysis to construct the ATAQ-IPF (A Tool to Assess Quality of life in IPF).ResultsThe ATAQ-IPF version 1 is composed of 74 items comprising 13 domains. All items fit the Rasch model. Domains and the total instrument possess acceptable psychometric characteristics for a multidimensional questionnaire. The pattern of correlations between ATAQ-IPF scores and physiologic variables known to be important in IPF, along with significant differences in ATAQ-IPF scores between subjects using versus those not using supplemental oxygen, support its validity.ConclusionsPatient-centered and careful statistical methodologies were used to construct the ATAQ-IPF version 1, an IPF-specific HRQL instrument. Simple summation scoring is used to derive individual domain scores as well as a total score. Results support the validity of the ATAQ-IPF, and future studies will build on that validity.
Highlights
Patient reported outcomes (PRO), such as quality of life (QOL) or health-related QOL (HRQL), are commonly used endpoints in clinical studies and therapeutic trials in patients with pulmonary diseases
Disease-specific health-related quality of life (HRQL) instruments have been developed for a number of pulmonary conditions, including chronic obstructive pulmonary disease [1,2,3] and asthma,[4,5] but not for idiopathic pulmonary fibrosis (IPF)
We report on the development an IPF-specific HRQL instrument called the ATAQ-IPF (A Tool to Assess QOL in IPF) version 1
Summary
Patient reported outcomes (PRO), such as quality of life (QOL) or health-related QOL (HRQL), are commonly used endpoints in clinical studies and therapeutic trials in patients with pulmonary diseases. Instruments that assess PRO focus on the perceptions of patients with the condition of interest; as such, they generate meaningful data on disease effects not captured by other outcome measures. Disease-specific HRQL instruments have been developed for a number of pulmonary conditions, including chronic obstructive pulmonary disease [1,2,3] and asthma,[4,5] but not for idiopathic pulmonary fibrosis (IPF). There is no disease-specific instrument to assess health-related quality of life (HRQL) in patients with idiopathic pulmonary fibrosis (IPF)
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