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Background: In the past two decades, many advances have been made to our understanding of interstitial lung disease (ILD) and the way we approach its treatment. Despite this, many questions remain unanswered, particularly those related to how the disease and its therapies impact outcomes that are most important to patients. There is currently a lack of guidance on how to best define and incorporate these patient-centered outcomes in ILD research. Objectives: To summarize the current state of patient-centered outcomes research in ILD, identify gaps in knowledge and research, and highlight opportunities and methods for future patient-centered research agendas in ILD. Methods: An international interdisciplinary group of experts was assembled. The group identified top patient-centered outcomes in ILD, reviewed available literature for each outcome, highlighted important discoveries and knowledge gaps, and formulated research recommendations. Results: The committee identified seven themes around patient-centered outcomes as the focus of the statement. After a review of the literature and expert committee discussion, we developed 28 research recommendations. Conclusions: Patient-centered outcomes are key to ascertaining whether and how ILD and interventions used to treat it affect the way patients feel and function in their daily lives. Ample opportunities exist to conduct additional work dedicated to elevating and incorporating patient-centered outcomes in ILD research.

RationaleChronic hypersensitivity pneumonitis (CHP) is a distinct form of interstitial lung disease caused by an inhaled environmental antigen. Some patients with CHP develop progressive pulmonary fibrosis and varying degrees of symptom severity, with heterogeneous impact on functioning and overall well-being. There are no universally accepted diagnostic criteria, few FDA-approved (Food and Drug Administration) therapies and no standardised approach to identifying an antigen. The impact that living with CHP has on patients’ quality of life is understudied, preventing the identification of patient-centred research questions and endpoints for future CHP clinical trials.ObjectivesWe explored patients’ experiences, perceptions and expectations of living with CHP.MethodsWe conducted semistructured interviews with patients with CHP. Patients were recruited using a purposive heterogeneous sampling strategy. Interviews were audio recorded and transcribed verbatim. Data were analysed using the grounded theory method.ResultsEighteen patients were interviewed. Six major themes emerged from the interviews: (1) suffering due to lack of knowledge and uncertainty, (2) hypervigilance, (3) psychosocial, (4) physical impacts, (5) interpersonal and (6) self-perception and identity. The need to identify and avoid an antigen played a prominent role across the themes and subthemes.ConclusionsWe identified several key influences on quality of life in patients with CHP that have not been adequately explored. The prevalence of these influences should be quantified, and they should be included in quality of life assessment and should guide the development of targeted interventions to improve quality of life in this patient population.