Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary

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Background: Interstitial lung diseases (ILD) are a heterogenous group of diseases that involve inflammation and/or fibrosis of the lung parenchyma. ILD can exert significant stress on a person’s extrapulmonary systems, eroding organ and physical function. Thus, ILD can accelerate age-related vulnerabilities that lead to early onset frailty, which makes frailty prevalent in ILD at any age. Frailty confers a three-fold increase of, and predicts, mortality in ILD. Objective: To present a feasible approach to understanding and addressing holistic health in ILD to fortify physical and psychological capacity markedly enhances a person’s tolerance of ILD and aging. Methods: From our previous published work that consisted of serial Medline and PubMed scoping reviews (with search terms such as frailty, interstitial lung disease, ILD, idiopathic pulmonary fibrosis, IPF, systemic sclerosis, sarcoidosis, well-being), patient focus groups, ILD outcome measures deconstruction and linking to the World Health Organization’s International Classification of Disability, and nominal group processes, we iteratively isolated factors that seem to accelerate and, importantly, protect against and reverse frailty. These factors were presented at The Eastern Pulmonary Conference in September 2024 and summarized herein. Results: The result is a collective statement that (a) summarizes health-care system responsibilities in providing sustainable, humane environments for patients and clinicians; (b) advocates for early intervention and shared decision-making from the time of diagnosis to fortify well-being when living with ILD; and (c) offers guidance to fortify physical, mental, and social well-being as well as health literacy and strength of patient voice. Conclusion: Proactive measures to protect against frailty begins at the time of diagnosis. Interventions that are incremental and based on patient priorities and preferences introduce a feasible approach to holistic well-being.

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