A journey without a map: Qualitative insights into the diagnosis of idiopathic pulmonary fibrosis

Background: Idiopathic pulmonary fibrosis (IPF) is an interstitial lung disease marked by progressive lung scarring of unknown cause. Diagnosis is complex, with an average delay of 2.1 years. While reasons for this delay are documented, less is known about the patient's lived experience during the diagnostic process. Objective: This qualitative descriptive study aimed to explore how individuals with IPF describe their diagnostic journey. Methods: Individual interviews were conducted with people living with IPF. Transcripts were analyzed using qualitative content analysis, identifying meaning units, condensing them, and developing codes. Codes were defined in a codebook and organized into subcategories, which were then grouped into categories to develop a unifying theme. Results: The sample included 11 individuals with IPF. Analysis generated 119 codes, organized into four categories: 1) Symptom recognition; 2) Explanation of diagnosis from providers; 3) Recognizing and reacting to ignorance about diagnosis; and 4) Deciding to disclose or not. These categories supported a central theme: being diagnosed with IPF is a nuanced, extended, and multifaceted experience. The process begins with symptom recognition and continues through obtaining diagnostic clarity, often requiring self-advocacy and persistence. This journey marks the transition into life with IPF. Diagnosis should thus be understood not as a discrete event, but as a dynamic, ongoing process. Conclusion: Findings suggest that receiving an IPF diagnosis is not a singular event, but a dynamic and evolving journey, highlighting the need for greater awareness of the patient experience during diagnosis.