IPF is severly debilitating and typically fatal. While halting disease progression and improving survival have long been the focus of IPF treatment, improving quality of life (QOL) is extremely important for many patients and currently, perhaps a more realistic goal. Despite the substantial toll of the disease on physical, emotional, and social aspects of patients’ lives, research focused on QOL in IPF has been limited. Currently, there is no disease-specific instrument for assessing HRQL in patients with IPF. The goal of this research is to develop such an instrument (the IPF-SAQ) for use in future studies (e.g., trials of novel therapies) enrolling IPF patients.
We performed hour-long semi-structured individual interviews and 1.5-2 hour-long focus group meetings, in which IPF patients of varying age and disease severity were asked questions to determine how IPF impacts the quality of their lives. All encounters were audio taped and transcribed into hard copy. Transcripts were analyzed to identify domains impacted most by IPF and will be further analyzed to develop individual items for potential inclusion in the IPF-SAQ. Once the items are developed, we will administer the draft version of the IPF-SAQ they compose to a cohort of IPF patients. We will perform psychometric analyses of that response data to select items and finalize the IPF-SAQ’s structure.
Some demographic and clinical characteristics of the 19 participants are presented in Table 1Table 1.
Characteristics of IPF patient interviewees and focus group participantsGender M/F13/6Median age in yrs (IQR)67 (61-74)Median disease duration in yrs (IQR)1.67 (0.83-3.42)Number using supplemental oxygenNone6With exertion4Continuous9. The IPF-SAQ’s provisional domains identified are given in Table 2Table 2.
Aspects of life most commonly identified as being affected by IPF-provisional domains of the IPF-SAQPhysical activityusing/transporting supplemental O2Stamina/energyrelations with/concerns about family membersCoughanticipation of disease progressionEase of breathing/breathlessnessfinancial securityIndependencetravelEmotional healthend-of-life.
Our interviews and focus groups identified multiple domains of life impacted by IPF. Some of them are not captured by existing measures of HRQL. In terms of the IPF-SAQ, these are provisional domains, but many are likely to be included in its finalized version.
This research will generate an IPF-specific HRQL instrument. Because of its particular relevance to IPF patients, the IPF-SAQ is expected to have greater reliability, validity for assessing HRQL longitudinally in IPF patients, and sensitivity to change than existing generic or non-IPF respiratory-specific HRQL instruments.
J.J. Swigris, None.