Edmonton Dyspnea Inventory- Validation Study

Dyspnea or breathlessness is a disabling and distressing symptom that affects every aspect of a patient and caregiver's life. It is prevalent in progressive pulmonary fibrosis (PPF) as well as many other fibrotic ILD (F-ILD). Idiopathic pulmonary fibrosis (IPF), the most common and well-studied F-ILD with a life expectancy of only 3-4 years, has a dyspnea prevalence of 90% at diagnosis. Despite the high dyspnea burden in IPF and PPF and its' impact on both health-related quality of life (HRQOL) and mortality, healthcare professionals often do not adequately assess or treat dyspnea in practice. Many reasons have been proposed for this care gap.

Dyspnea is a subjective and complex symptom where experience is shaped by a variety of factors, including physiological, psychological, and environmental influences. Degree of lung function impairment does not consistently predict level of breathlessness and cannot be used as a surrogate for direct dyspnea measures. Unfortunately, dyspnea is not frequently assessed in care. Many scales exist including uni- and multidimensional scales. MRC, a unidimensional scale, is the most commonly used dyspnea scale. The MRC scale assesses dyspnea by asking which activities, ranging from vigorous exercise to minimal activities of daily living, are limited by dyspnea. The MRC scale has shown good utility in many studies. A major drawback of the MRC scale in some populations is the lack of a scale point for patients who experience dyspnea at rest, but it is easy to extend the scale to ask about dyspnea at rest. However, scales such as the MRC are indirect; they do not actually ask the patient how much dyspnea they experience. Experts have therefore recommended that patients not only be routinely asked about dyspnea but should also be asked to rate its severity. In a recent study of over 67000 patients, dyspnea severity reported by patients during a rapid nursing assessment on admission was associated with two-fold odds of death in 2 years. The authors noted that patients who reported any dyspnea were at an increased risk of death during that hospital stay, the greater the dyspnea severity, the greater the risk of death. Even after adjustment for patient comorbidities, demographics, and severity of illness, increasing dyspnea severity remained associated with inpatient mortality. They suggest that routine assessment of dyspnea severity may allow for better monitoring and optimal interventions that could potentially reduce mortality and morbidity. A 2015 survey of US-based hospitalists also suggests that dyspnea severity may help guide management. Unfortunately, routine dyspnea severity assessment is also uncommon in practice.

Secondly there are no dyspnea treatment algorithms for clinicians to implement in practice. The American Thoracic Society (ATS) statements and guidelines emphasize the urgent need to assess and manage dyspnea in respiratory disease, including IPF but do not provide a treatment algorithm. They do recommend evidence-based therapies such as pulmonary rehabilitation, anxiolytics and opioids and the treatment of associated psychosocial factors. And finally, physician perspectives regarding dyspnea and reluctance to use opiates, inadequate education and lack of training are all important barriers to effective dyspnea management.

To address this care gap in assessment, investigator developed an easy-to-use scale, Edmonton Dyspnea Inventory (EDI) in the Multidisciplinary Collaborative ILD Clinic, Edmonton, Canada. EDI is a pilot tool to assess dyspnea severity at rest, during activities of daily living and self-reported exercise. In addition, the tool also documents crisis dyspnea episodes and their triggers to guide management. Investigator's preliminary work showed that EDI has good internal consistency, strong correlation with MRC and weak correlation with lung function data. Group based trajectory modelling showed 3 different groups of dyspnea intensity with implications for survival. Investigator also showed feasibility of outpatient clinical use over 10 years. In addition, EDI use led to early institution of dyspnea therapies (van Den Bosch AJHPC 2023). This tool facilitated early and personalized dyspnea management that differs both between and within individual MRC grades (Kalluri. AJHPC 2024). Investigator has also shown this approach to dyspnea assessment and management facilitates patient self-management and mastery, allowing reduction in acute care utilization and healthcare costs in IPF. This is the only tool to that facilitates both assessment and management of dyspnea. Systematic assessment and appropriate dyspnea management is an urgent unmet need in patient care. Physicians and clinicians require an easy-to-use tool to assess dyspnea and create a personalized management plan for their patients. Investigator believes EDI can serve both purposes as per our early studies. Investigator proposes to examine EDI's cross-sectional and longitudinal validity and reliability for use in IPF and F-ILD including PPF. Investigator will also explore patient and care provider perceptions on the use of EDI and its potential/actual impact on clinical care using focus group methodology. Investigator will recruit participants from all three sites for qualitative analysis.